When I was at my neurologist appointment on 12-21/12, he ordered a wheelchair due to my problems walking. On 12/26/12. I got a phone call from his assistant today saying that I would be getting a call from the medical supply company about when we could pick it up. I was upset about the fact that at 28 years old, I had a walker already and would be getting a wheelchair too. I thought to myself, at least this gives me the time to accept it and maybe it won't be so bad.
A couple hours later, the door bell rang. I thought it was the mail or some other delivery. NOPE! The people didn't call and just delivered the wheelchair. Yes, it saved us a trip, but it surprised me. I managed to hold it together while the man was showing me how to work everything and sign the paperwork. As soon as we closed the door, I lost it. I don't know why it was so horrible but I hated it. My husband grabbed me and held me and all I could do was bawl.
All I want is someone to "fix me". I know that I will never be completely cured but make me the best that they can.
Thursday, December 27, 2012
Wednesday, December 26, 2012
The Weekend Before Christmas
On 12-21-12, I had a scheduled appointment with my neurologist. I had been to the ER 10 days prior for severe spine pain and barely being able to walk. We discussed this at the appointment and he ordered me a wheelchair and submitted a request to have me seen at the Mayo Clinic in Florida. Since the ER trip, things had only gotten worse so I asked if he thought it would be a good idea to go back to the hospital. He didn't think that it was a bad idea. I explained to my neuro that the ER I usually go to seemed to keep just giving me meds and pushing me through. I asked if he thought it would be better to try one of the other local hospitals. He didn't really have an opinion but after discussing it with my husband, we decided to go somewhere new. We found a babysitter so I didn't have to do it alone, dropped our son off, and off we went.
We arrived at the new ER. They have a parking garage and it was far from the entrance. My ability to walk was so bad that my husband had to hold onto me and bear most of my weight to get me to the door. The walk took forever and then a complete stranger came up and offered to help. We got close enough and a nurse saw and asked if I needed a wheelchair. After finally getting one, getting inside and getting signed in, I was almost immediately sent back to triage. Amongst the pain and inability to walk, I had a couple other "issues", that the triage nurse called someone and they took me straight back to a bed. It only took 27 minutes from signing in until a doctor came and talked to me. After explaining my problems, there were a few things he needed to check. After that was done, I was given the option to get an MRI. He told me that if I did, I was definitely being admitted and would be having surgery and in the hospital for the holiday. Not only did that scare me to death, my son instantly popped into my head. I had actually considered not doing anything just to be able to be home with him for the holiday. After a few minutes of trying to figure out what I wanted to do, I was told that I was having the MRI and being admitted. I was crushed. I thought the worst. The MRI results had come back and said that I had bulging discs in my lumbar spine as well as degenerative disc disease. This meant that my entire spine had these issues, not to my Chiari, Syringomyelia, and all the other issues.
I was taken to my room and settled in. It was late so my husband left to go get our son and get him home. They just kept giving me my regular meds and an extra pain med, although it didn't touch the pain, that's all they kept continuing to do. The next morning, my family showed up. The neurosurgeon, not my neurosurgeon but one from his office, came to see me. I remember him talking to me and even considering having my husband go home and get my pre-op and post-op MRIs. I don't know what he was thinking but he changed his mind and just stated that he wanted me to see him in 4-6 weeks and that a neurologist would have to come look at me before I could be discharged. That wasn't until the next day. By the time he got there, checked me out, they ordered a walker for me, and my discharge was processed, it was about 6 pm on 12-23-12. Needless to say, I was in so much pain, exhausted from pretty much no sleep, but I was free. I just had to pick up the walker and home we went. I was so happy to be home in time to get everything ready and be with my son for Christmas. Even though I was still in extreme pain, I did what I had to, with the help from my husband, to make sure "Santa" came and everything was perfect.
The only thing left to do is get the referral I need and get my appointment scheduled with the new neurosurgeon. I am happy to see a new one. He has great references, treated me well, and I truly got the feeling from him that he wants to help me. That is not the case with the surgeon who did my Chiari surgery. I haven't seen him since the day after my surgery. I had only seen his NP, who treated me like dirt and a junkie.
We arrived at the new ER. They have a parking garage and it was far from the entrance. My ability to walk was so bad that my husband had to hold onto me and bear most of my weight to get me to the door. The walk took forever and then a complete stranger came up and offered to help. We got close enough and a nurse saw and asked if I needed a wheelchair. After finally getting one, getting inside and getting signed in, I was almost immediately sent back to triage. Amongst the pain and inability to walk, I had a couple other "issues", that the triage nurse called someone and they took me straight back to a bed. It only took 27 minutes from signing in until a doctor came and talked to me. After explaining my problems, there were a few things he needed to check. After that was done, I was given the option to get an MRI. He told me that if I did, I was definitely being admitted and would be having surgery and in the hospital for the holiday. Not only did that scare me to death, my son instantly popped into my head. I had actually considered not doing anything just to be able to be home with him for the holiday. After a few minutes of trying to figure out what I wanted to do, I was told that I was having the MRI and being admitted. I was crushed. I thought the worst. The MRI results had come back and said that I had bulging discs in my lumbar spine as well as degenerative disc disease. This meant that my entire spine had these issues, not to my Chiari, Syringomyelia, and all the other issues.
I was taken to my room and settled in. It was late so my husband left to go get our son and get him home. They just kept giving me my regular meds and an extra pain med, although it didn't touch the pain, that's all they kept continuing to do. The next morning, my family showed up. The neurosurgeon, not my neurosurgeon but one from his office, came to see me. I remember him talking to me and even considering having my husband go home and get my pre-op and post-op MRIs. I don't know what he was thinking but he changed his mind and just stated that he wanted me to see him in 4-6 weeks and that a neurologist would have to come look at me before I could be discharged. That wasn't until the next day. By the time he got there, checked me out, they ordered a walker for me, and my discharge was processed, it was about 6 pm on 12-23-12. Needless to say, I was in so much pain, exhausted from pretty much no sleep, but I was free. I just had to pick up the walker and home we went. I was so happy to be home in time to get everything ready and be with my son for Christmas. Even though I was still in extreme pain, I did what I had to, with the help from my husband, to make sure "Santa" came and everything was perfect.
The only thing left to do is get the referral I need and get my appointment scheduled with the new neurosurgeon. I am happy to see a new one. He has great references, treated me well, and I truly got the feeling from him that he wants to help me. That is not the case with the surgeon who did my Chiari surgery. I haven't seen him since the day after my surgery. I had only seen his NP, who treated me like dirt and a junkie.
Tuesday, December 18, 2012
I GIVE UP!!!
I truly thought that I had the strength to face these conditions, but I don't think I do anymore. I am so sick of fighting and fighting for everything and not getting any results. I am sick of going to doctors or emergency rooms and be told to give it time or try this or try that. NOTHING IS WORKING! I have no life anymore. I can't do barely anything without being in pain that most people will never know.
I HATE CHIARI! I HATE SYRINGOMYELIA! I HATE DEGENERATIVE DISC DISEASE! I HATE SEIZURES! I HATE ALL OF IT! Even though I have been seizure free for over a month now, I still can't get in my car and just go somewhere to be alone. I can't drive for a year after the last episode. I am so sick of feeling alone in all of this. While I have people who care and support me, no one that I actually know in real life knows what I am going through. I have a few internet friends that do but that is all. It is so unfair.
I just want to feel better. I want to be able to do things and have fun. I want to be happy and let me tell you that I am far from it. I don't know how much more of it I can take before I snap. I mean how much is one person supposed to go through before they just give up trying to get answers or feel better. I have accepted that I have these conditions. I know there is no cure. I know it could be worse and I could have something that would leave me with little time to live. I just hate that I feel like I am not living because of all that I am going through.
You try to explain the pain, but it is unexplainable. There is no way for me to get those around me to truly understand how I feel and that kills me. I hold a lot inside because of it. If having these conditions were not enough, I constantly have new issues that pop up that scare me, hurt me, and piss me off. I really just want to be me again. I feel as though I will never be me again. When someone gets to the point where they would try any medicine, undergo any procedure, or do absolutely anything to have even just some relief, I think that at their whits end. I am at that place. I guess I just have to accept the fact that this is my life until the end. I will always be in pain, be numb, have so many body issues, and have to face the sadness and depression that goes along with it.
I know that some people out there won't agree with giving up fighting. I can't help that that is the way I feel. No this is not a statement meaning that I give up on my life. I am not giving up on my family. I just give up on my health. Whatever is going to happen is going to happen and from my experience, there is nothing I can do about that.
I HATE CHIARI! I HATE SYRINGOMYELIA! I HATE DEGENERATIVE DISC DISEASE! I HATE SEIZURES! I HATE ALL OF IT! Even though I have been seizure free for over a month now, I still can't get in my car and just go somewhere to be alone. I can't drive for a year after the last episode. I am so sick of feeling alone in all of this. While I have people who care and support me, no one that I actually know in real life knows what I am going through. I have a few internet friends that do but that is all. It is so unfair.
I just want to feel better. I want to be able to do things and have fun. I want to be happy and let me tell you that I am far from it. I don't know how much more of it I can take before I snap. I mean how much is one person supposed to go through before they just give up trying to get answers or feel better. I have accepted that I have these conditions. I know there is no cure. I know it could be worse and I could have something that would leave me with little time to live. I just hate that I feel like I am not living because of all that I am going through.
You try to explain the pain, but it is unexplainable. There is no way for me to get those around me to truly understand how I feel and that kills me. I hold a lot inside because of it. If having these conditions were not enough, I constantly have new issues that pop up that scare me, hurt me, and piss me off. I really just want to be me again. I feel as though I will never be me again. When someone gets to the point where they would try any medicine, undergo any procedure, or do absolutely anything to have even just some relief, I think that at their whits end. I am at that place. I guess I just have to accept the fact that this is my life until the end. I will always be in pain, be numb, have so many body issues, and have to face the sadness and depression that goes along with it.
I know that some people out there won't agree with giving up fighting. I can't help that that is the way I feel. No this is not a statement meaning that I give up on my life. I am not giving up on my family. I just give up on my health. Whatever is going to happen is going to happen and from my experience, there is nothing I can do about that.
Monday, December 17, 2012
Just Can't Seem To Get Better
I swear, it seems like nothing I do provides any relief. I was back in the ER on 12/11. I woke up that morning with SEVERE pain all the way down my spine, clear to my tail bone. My legs were killing me, and it was excruciating to walk or even move. I called my neurologist and they said that he was full but if I was in that much pain to go to the ER. My husband came and got me and took me right away.
It was a different pain and in more area of my spine that it has ever been. I got back in with the doctor and since my son was with us, since we have no one to watch him, my husband had to take him out and I had to stay in there alone. The doctor checked me out, ordered no tests, and just ordered pain meds and steroids. About an hour later, the doctor came back and asked if I had any relief yet. I told him that no one had been to see me since he was there, even though I was in a bed, in the hallway, right in front of the nurses station. He said he would take care of it. A couple minutes later, the nurse came, put in the IV, and gave me the medicine. A little while later, the doctor came back to check on me. I told him that I didn't feel a difference. Still no tests or imaging, he just ordered more medicine. The nurse came and gave me more and then was discharged shortly after.
I finally got out of the hospital and looked at the paperwork they gave me. The diagnosis...NECK PAIN. I just don't get it. Yes it started in my neck but this was not neck pain. I know neck pain, I have been dealing with it since 1996. It is now almost a week later and with my regular meds, the steroids, and lots of resting, I still have no relief. I know from my last images that I have 2 posterior fossa fluid collections, a syrinx that looks like it got a little bigger, a protruding disc, and degenerative disc disease. I know that I am not a doctor, but the post-op images still look like there was not enough room created during my decompression surgery.
I received steroid injections on 12/3, in my neck, to see if that was the area that was causing the problems. Well, NO RELIEF so I am assuming that they were unsuccessful. I go back to my neurologist on Friday. It is time for me to really force the issue and take this into my own hands. I cannot and will not sit back and get worse and feel this way every day. I am going to make sure that he either does some new tests, gives me a referral to a new neurosurgeon, or something. I refuse to go back to the one that did my surgery after the way I was treated.
I am to the point where I want to go in and have the complete Chiari surgery done, a shunt put in the syrinx, and have the fluid drained. I would let them do absolutely anything at this point. I would let them fuse my entire spine, replace discs, whatever it takes. This just isn't about me, I have a 4 year old son and a husband that are losing out on having a normal mother and wife because of all of this. I know that I will never be "normal" and I have to deal with this, but I don't have a single day that I feel even remotely good. I have to force myself to do pretty much anything. It isn't fair to me, my son, my husband, or anyone. All I want is some relief. Is that too much to ask for??? I see all of these success stories and it kills me to know that I am not one of them. I don't need to be completely healed, but I do need relief. I am unsure what Pain Management will do when I go back to them in a few weeks but we will see. I would even let them put a neurostimulator in if they thought it would work.
To all of you out there that are facing Chiari, Syringomyelia, or any of the issues related to them, I truly, from the bottom of my heart, hope that you feel better than I do. My goal of this blog is just to vent, help someone, or just let someone out there know that they are not alone in what they are feeling. I am unsure who is reading, I just hope that my goal is being accomplished.
It was a different pain and in more area of my spine that it has ever been. I got back in with the doctor and since my son was with us, since we have no one to watch him, my husband had to take him out and I had to stay in there alone. The doctor checked me out, ordered no tests, and just ordered pain meds and steroids. About an hour later, the doctor came back and asked if I had any relief yet. I told him that no one had been to see me since he was there, even though I was in a bed, in the hallway, right in front of the nurses station. He said he would take care of it. A couple minutes later, the nurse came, put in the IV, and gave me the medicine. A little while later, the doctor came back to check on me. I told him that I didn't feel a difference. Still no tests or imaging, he just ordered more medicine. The nurse came and gave me more and then was discharged shortly after.
I finally got out of the hospital and looked at the paperwork they gave me. The diagnosis...NECK PAIN. I just don't get it. Yes it started in my neck but this was not neck pain. I know neck pain, I have been dealing with it since 1996. It is now almost a week later and with my regular meds, the steroids, and lots of resting, I still have no relief. I know from my last images that I have 2 posterior fossa fluid collections, a syrinx that looks like it got a little bigger, a protruding disc, and degenerative disc disease. I know that I am not a doctor, but the post-op images still look like there was not enough room created during my decompression surgery.
I received steroid injections on 12/3, in my neck, to see if that was the area that was causing the problems. Well, NO RELIEF so I am assuming that they were unsuccessful. I go back to my neurologist on Friday. It is time for me to really force the issue and take this into my own hands. I cannot and will not sit back and get worse and feel this way every day. I am going to make sure that he either does some new tests, gives me a referral to a new neurosurgeon, or something. I refuse to go back to the one that did my surgery after the way I was treated.
I am to the point where I want to go in and have the complete Chiari surgery done, a shunt put in the syrinx, and have the fluid drained. I would let them do absolutely anything at this point. I would let them fuse my entire spine, replace discs, whatever it takes. This just isn't about me, I have a 4 year old son and a husband that are losing out on having a normal mother and wife because of all of this. I know that I will never be "normal" and I have to deal with this, but I don't have a single day that I feel even remotely good. I have to force myself to do pretty much anything. It isn't fair to me, my son, my husband, or anyone. All I want is some relief. Is that too much to ask for??? I see all of these success stories and it kills me to know that I am not one of them. I don't need to be completely healed, but I do need relief. I am unsure what Pain Management will do when I go back to them in a few weeks but we will see. I would even let them put a neurostimulator in if they thought it would work.
To all of you out there that are facing Chiari, Syringomyelia, or any of the issues related to them, I truly, from the bottom of my heart, hope that you feel better than I do. My goal of this blog is just to vent, help someone, or just let someone out there know that they are not alone in what they are feeling. I am unsure who is reading, I just hope that my goal is being accomplished.
Friday, December 7, 2012
It's been a while.
Well, I know that it's been a while since I have been on here. Of course I have no idea who reads this or if it even makes a difference, but it helps me. I've been pretty much the same since the last post with the same issues. The only thing that has changed is that today is 4 weeks since my last seizure and my legs no longer ache on the inside, like the restless leg feeling.
The doctor has started me on the Butrans 20 mcg/hr patch a few weeks ago and the only change I have noticed from it is the leg thing. I still get the pain, numbness/tingling, etc. The worst part of starting the patch was two days later, I was couch bound for two days. I had a severe migraine to where I almost couldn't move and was vomiting, even with the nausea medicine. I don't know for sure that it was the patch or I got my first extremely severe Chiari headache. I am still going to give it more time to see if I get more relief.
I have been more active with Pain Management. They agreed with the medicines that I am on for now and on Monday, December 3rd, I received my first facet joint injections in my neck. It wasn't anything like I had expected. I expected tons of pain and to be completely out of it from the sedation that I opted for. The worst part of the whole procedure was the numbing shots. They weren't even that bad. The only issues I had with the sedation was for the first few minutes I was a little wobbly. The numbness for a few hours was nice, but once it wore off, I was barely in a little more pain than normal, so I used some ice, took my medicine, and went to bed. I haven't noticed anything yet but just like the pain patch, I am going to wait and give it time. It says that it can take up to two weeks to take full effect. I hope that this is something that works for me. I am so tired of nothing making much of a difference. I don't understand why nothing is bringing me below a 7. I am still, most days, at a 7 or 8 on the pain scale. I go back in a month, due to the holidays, for a follow-up. I guess they will decide from there, if there isn't a change by then, what to do next. The PA that I see there is awesome and told me not to worry because there are plenty of treatments they can try. I will keep my fingers crossed.
I have probably already said this in the past, but this is all so exhausting. I am tired all the time. The new issue is that I sleep for an hour, maybe two, and then have to get up and move around a little because I hurt and am so uncomfortable. I go back to bed and it happens again a couple hours later. Some days I decide to just stay up. For about the past month, I have only slept one night, all the way though. Then between, trying to keep up with my son, husband, the house, and life, it wears me out even more.
The last month or two has been really difficult for me. I really think that the whole lifelong illness thing has finally hit me. Anymore it's not so much. "Why me?", but more, "How can we get me as comfortable as possible.". I try to wait until my good days to take care of the house but sometimes I can't stand it that I work on my bad days too. Nothing too big but I am so OCD that even though my house is already clean, I feel as if it is a disaster area. My house for me is the only thing I feel I have control over. I can't control my Chiari, Syringomyelia, symptoms of Fibromyalgia, pinched nerves, etc. I have also had a hard time with personal stuff lately and it's not helping one bit. Between the health issues and life in general, it has gotten me to the point, at this time, that I don't even really want to leave the house. It has all left me with some depression issues, which I have had for years but got under control without meds for almost 6 years now. I have few people I can talk to about a lot of it because they either just don't understand or I don't want everyone knowing my personal business. It makes you feel so alone.
Now that I have vented and have been depressing, I will say good bye until next time. I go back to Neuro next week, and we will just have to wait and see what he has to say. I feel like with all these doctors, they just don't have a clue what to do with me anymore. At least to the doctors I am seeing now, I am no longer a junkie. In case I'm not on again for a while, I hope whoever is reading this has a very Merry Christmas and a Happy, pain free, New Year!
The doctor has started me on the Butrans 20 mcg/hr patch a few weeks ago and the only change I have noticed from it is the leg thing. I still get the pain, numbness/tingling, etc. The worst part of starting the patch was two days later, I was couch bound for two days. I had a severe migraine to where I almost couldn't move and was vomiting, even with the nausea medicine. I don't know for sure that it was the patch or I got my first extremely severe Chiari headache. I am still going to give it more time to see if I get more relief.
I have been more active with Pain Management. They agreed with the medicines that I am on for now and on Monday, December 3rd, I received my first facet joint injections in my neck. It wasn't anything like I had expected. I expected tons of pain and to be completely out of it from the sedation that I opted for. The worst part of the whole procedure was the numbing shots. They weren't even that bad. The only issues I had with the sedation was for the first few minutes I was a little wobbly. The numbness for a few hours was nice, but once it wore off, I was barely in a little more pain than normal, so I used some ice, took my medicine, and went to bed. I haven't noticed anything yet but just like the pain patch, I am going to wait and give it time. It says that it can take up to two weeks to take full effect. I hope that this is something that works for me. I am so tired of nothing making much of a difference. I don't understand why nothing is bringing me below a 7. I am still, most days, at a 7 or 8 on the pain scale. I go back in a month, due to the holidays, for a follow-up. I guess they will decide from there, if there isn't a change by then, what to do next. The PA that I see there is awesome and told me not to worry because there are plenty of treatments they can try. I will keep my fingers crossed.
I have probably already said this in the past, but this is all so exhausting. I am tired all the time. The new issue is that I sleep for an hour, maybe two, and then have to get up and move around a little because I hurt and am so uncomfortable. I go back to bed and it happens again a couple hours later. Some days I decide to just stay up. For about the past month, I have only slept one night, all the way though. Then between, trying to keep up with my son, husband, the house, and life, it wears me out even more.
The last month or two has been really difficult for me. I really think that the whole lifelong illness thing has finally hit me. Anymore it's not so much. "Why me?", but more, "How can we get me as comfortable as possible.". I try to wait until my good days to take care of the house but sometimes I can't stand it that I work on my bad days too. Nothing too big but I am so OCD that even though my house is already clean, I feel as if it is a disaster area. My house for me is the only thing I feel I have control over. I can't control my Chiari, Syringomyelia, symptoms of Fibromyalgia, pinched nerves, etc. I have also had a hard time with personal stuff lately and it's not helping one bit. Between the health issues and life in general, it has gotten me to the point, at this time, that I don't even really want to leave the house. It has all left me with some depression issues, which I have had for years but got under control without meds for almost 6 years now. I have few people I can talk to about a lot of it because they either just don't understand or I don't want everyone knowing my personal business. It makes you feel so alone.
Now that I have vented and have been depressing, I will say good bye until next time. I go back to Neuro next week, and we will just have to wait and see what he has to say. I feel like with all these doctors, they just don't have a clue what to do with me anymore. At least to the doctors I am seeing now, I am no longer a junkie. In case I'm not on again for a while, I hope whoever is reading this has a very Merry Christmas and a Happy, pain free, New Year!
Sunday, November 18, 2012
Another one of those days
Today has not been such a great day. Heck, since Friday has been tough. I have had migraines and been sick all weekend. I felt fine and it hit out of the blue. I spent Friday and Saturday glued to the couch, feeling terrible. This morning when I woke up, I felt a little better but could still feel it lingering. I knew that I had to go to the store to get food and all that we need for Thanksgiving dinner so I got myself together and managed to get through it. Of course, I then came home and pretty much went straight back to the couch with my husband and son as soon as everything was put away.
I think all of the problems I have been facing the past few days is adjusting to my new medication schedule. It has drained me to the point where I don't want to do anything other than lay on the couch and sleep. It has also gotten me to the point that I hate that I am living all this. I try to be as strong as I can, but you can't be strong all the time. Everyone with an illness is going to face times where they hate having to live life the way they do and can't just be "normal". Most days, I can accept it. Today is just not one of those days. Today is one of the days where I just want to scream, throw things, and wonder if this is ever going to get better or just continue to get worse. I know this sounds weak, but I feel that everyone is entitled to have weak moments.
I know that there are people out there that have it way worse than I do. I truly feel for those people. I know the pain and difficulties that I face and I don't think I could even begin to know what to do if I had something worse. If it weren't for my husband, son, family, friends, and all of those in my support system, I would be having a lot rougher time with all of this. I am truly trying to make my problems eye openers for people who have no clue about my conditions. People need to open their eyes to not only the things I am facing, but all the diseases out there that many people have no clue about.
While I know that I will get past this, just like I always do, I know that I need to work on ways to snap myself out of these moods I get into sometimes faster. I will get there. I will not stop until I am able to turn my conditions into something good. It may take some time, for not only me, but for those around me who mean the most to me, I have to make the best of what I have.
I think all of the problems I have been facing the past few days is adjusting to my new medication schedule. It has drained me to the point where I don't want to do anything other than lay on the couch and sleep. It has also gotten me to the point that I hate that I am living all this. I try to be as strong as I can, but you can't be strong all the time. Everyone with an illness is going to face times where they hate having to live life the way they do and can't just be "normal". Most days, I can accept it. Today is just not one of those days. Today is one of the days where I just want to scream, throw things, and wonder if this is ever going to get better or just continue to get worse. I know this sounds weak, but I feel that everyone is entitled to have weak moments.
I know that there are people out there that have it way worse than I do. I truly feel for those people. I know the pain and difficulties that I face and I don't think I could even begin to know what to do if I had something worse. If it weren't for my husband, son, family, friends, and all of those in my support system, I would be having a lot rougher time with all of this. I am truly trying to make my problems eye openers for people who have no clue about my conditions. People need to open their eyes to not only the things I am facing, but all the diseases out there that many people have no clue about.
While I know that I will get past this, just like I always do, I know that I need to work on ways to snap myself out of these moods I get into sometimes faster. I will get there. I will not stop until I am able to turn my conditions into something good. It may take some time, for not only me, but for those around me who mean the most to me, I have to make the best of what I have.
Thursday, November 15, 2012
Pain Management...AND IT WENT GREAT!!!
This morning, I finally went to my pain management appointment. I was skeptical going in since I have had completely different reactions from different doctors. Some who believed me and tried to help the best they could, and some who would just blow me off like I was some kind of junkie. We arrived early and were able to get in straight away. As soon as we were taken back by the nurse to get some information, a calm feeling came over me. She was amazing. She believed what I was telling her and even made the comment to me, "How have you even been making it day to day?". I was in awe! I hadn't expected this type of attitude from them. Once she recorded all my information and took all my reports to scan, she put me in the room to wait for the doctor.
We got into the room and I was thinking that we were going to be waiting forever. Yet again, something amazing happened...WE DIDN'T HAVE TO! We waited about 5 minutes and the P.A. knocked on the door. As soon as she walked into the room, the look on her face and the vibe she was putting off, I felt that calm feeling again. She immediately started asking questions and looking at all of my reports. We discussed my medicines and she agreed that she thought it was a good start. She also reassured me that the new medicine I had put on just the night before, was perfectly fine to take with all of the ones I had been on for a while. I felt so much better. Once we got over the question part, I broke down crying. I told her about all the troubles I have had with some doctors and my neurosurgeons office and that it just felt so good to have someone else on my side.
After the small meltdown, she started discussing treatment options. She asked about massage therapy but I explained to her that when I had done them in the past, it felt good while I was getting the massage but within about 30 minutes, all my muscles would completely lock up and migraines would hit. She agreed that we would just stay away from that. Her next option was Facet Joint Injections. I told her that I would try whatever she thought would be my best route. At this point, I have already had brain surgery, what's a few shots in the neck. I still have to wait a few weeks to get them but I am kind of excited but anxious at the same time. They offer sedation to where I won't be completely out but it will at least help my nerves. I don't mind needles, however, there is just something about getting 6 shots in an area of my body that is already in so much pain that makes me a little nervous.
Since we had decided on my first course of treatment, she gave me the refills I needed, scheduled my appointment for the injections, and I was out of there. I was in total shock that two appointments in one week had went so well. After years of bad appointments, I was so happy!
We got into the room and I was thinking that we were going to be waiting forever. Yet again, something amazing happened...WE DIDN'T HAVE TO! We waited about 5 minutes and the P.A. knocked on the door. As soon as she walked into the room, the look on her face and the vibe she was putting off, I felt that calm feeling again. She immediately started asking questions and looking at all of my reports. We discussed my medicines and she agreed that she thought it was a good start. She also reassured me that the new medicine I had put on just the night before, was perfectly fine to take with all of the ones I had been on for a while. I felt so much better. Once we got over the question part, I broke down crying. I told her about all the troubles I have had with some doctors and my neurosurgeons office and that it just felt so good to have someone else on my side.
After the small meltdown, she started discussing treatment options. She asked about massage therapy but I explained to her that when I had done them in the past, it felt good while I was getting the massage but within about 30 minutes, all my muscles would completely lock up and migraines would hit. She agreed that we would just stay away from that. Her next option was Facet Joint Injections. I told her that I would try whatever she thought would be my best route. At this point, I have already had brain surgery, what's a few shots in the neck. I still have to wait a few weeks to get them but I am kind of excited but anxious at the same time. They offer sedation to where I won't be completely out but it will at least help my nerves. I don't mind needles, however, there is just something about getting 6 shots in an area of my body that is already in so much pain that makes me a little nervous.
Since we had decided on my first course of treatment, she gave me the refills I needed, scheduled my appointment for the injections, and I was out of there. I was in total shock that two appointments in one week had went so well. After years of bad appointments, I was so happy!
Wednesday, November 14, 2012
Starting my new medication
Well, this evening, I started the new medicine that the neurologist prescribed me. It is a pain patch, and let me tell you I was freaking out. It took me a while of reading the pamphlets and everything that came with them. I had about a 20 minute meltdown before I was finally able to get up the courage to put it on. The whole time, my husband was there, yet again, to support me. He just kept telling me that it would be okay and to just do it. The time came. We read the instructions thoroughly, and my husband helped me put it on. I had yet another meltdown.
I was so worried that something bad was going to happen that I even had to call my mom and dad. Yes, a 28 year old calling mommy and daddy. LOL! Being an Army wife and being so far away from most of your support system can make even the littlest things so hard. After talking to them, I felt a little better, but I was still worried so I didn't take my normal meds in fears of something bad happening. I don't know why, but it just got stuck in my head that the medicine would kick in really fast and being stronger than anything I had ever taken.
I was so worried that something bad was going to happen that I even had to call my mom and dad. Yes, a 28 year old calling mommy and daddy. LOL! Being an Army wife and being so far away from most of your support system can make even the littlest things so hard. After talking to them, I felt a little better, but I was still worried so I didn't take my normal meds in fears of something bad happening. I don't know why, but it just got stuck in my head that the medicine would kick in really fast and being stronger than anything I had ever taken.
Update with the Neurologist!
So I got some good news. What a change! Normally, every time I see a doctor, it's something new that needs to be dealt with. It was a great feeling walking out of that office with a few answers and new plan to try to get me feeling better.
I went to the neurologist yesterday. The results from my 48 hour EEG came back good. While I am still having seizures, they are NON-EPILEPTIC! Yes I still have to deal with wondering when the next one will hit and not being able to drive, but at least I know there isn't anything going on in my brain. The doctor seems to think that they are due to my pain and central nervous system being messed up plus the fact that I am still recovering from my decompression surgery. He seemed hopeful that once everything starts settling down, they will stop. I hope that he is right. That means that I no longer have to take the epilepsy medicine and got to get rid of two other medicines as well.
The other thing that got dealt with was a new plan for my pain. He said that the most important thing he wants to work on is my "pain and suffering". When that came out of his mouth, I was so thankful. Finally, someone trying to help and not just think I am some junkie. He adjusted the medicines I am already on a little and added a new one as well. I sure hope this works. He called them right in and said he wanted to see me in 4 weeks just to see how things were going. He also sent his notes over to my pain management doctor and asked me to have him do the same thing. Another happy moment. A doctor wanting to work with one of my other doctors to get me back to as close to normal as possible. I will be seeing the pain doctor tomorrow morning but I am not quite sure on how I feel that appointment will go.
When we left my appointment, we went straight to the pharmacy to get the new medicines. They told me that they were still working on the and check back in about 15 minutes. After wandering the store for a while, we went back to be told that the new medicine was declined by my insurance because it needed pre-approval. UGH! When I got home, I called and left a message with the nurse, who got back to me pretty quickly. She called and got Tricare to approve the medicine and called the pharmacy to let them know. My husband went back to the pharmacy on his way home from work. When he got there, they told him that they were out of stock but they would have them this afternoon. Another irritating moment. Now we were just in there a few hours before so why couldn't they tell us that then. I was a little frustrated for a while but once I remembered the fact that the appointment went well and that this was the biggest problem, I got over it.
The new ordeal is going to be adjusting to the new treatment plan and getting used to new medicine. I can deal with that. At least it is something. I just hope that the side effects don't end up being more than the benefits. If I can get to a place where I am not at an 8-10 daily on the pain scale, I will be on happy zipperhead!!!
I went to the neurologist yesterday. The results from my 48 hour EEG came back good. While I am still having seizures, they are NON-EPILEPTIC! Yes I still have to deal with wondering when the next one will hit and not being able to drive, but at least I know there isn't anything going on in my brain. The doctor seems to think that they are due to my pain and central nervous system being messed up plus the fact that I am still recovering from my decompression surgery. He seemed hopeful that once everything starts settling down, they will stop. I hope that he is right. That means that I no longer have to take the epilepsy medicine and got to get rid of two other medicines as well.
The other thing that got dealt with was a new plan for my pain. He said that the most important thing he wants to work on is my "pain and suffering". When that came out of his mouth, I was so thankful. Finally, someone trying to help and not just think I am some junkie. He adjusted the medicines I am already on a little and added a new one as well. I sure hope this works. He called them right in and said he wanted to see me in 4 weeks just to see how things were going. He also sent his notes over to my pain management doctor and asked me to have him do the same thing. Another happy moment. A doctor wanting to work with one of my other doctors to get me back to as close to normal as possible. I will be seeing the pain doctor tomorrow morning but I am not quite sure on how I feel that appointment will go.
When we left my appointment, we went straight to the pharmacy to get the new medicines. They told me that they were still working on the and check back in about 15 minutes. After wandering the store for a while, we went back to be told that the new medicine was declined by my insurance because it needed pre-approval. UGH! When I got home, I called and left a message with the nurse, who got back to me pretty quickly. She called and got Tricare to approve the medicine and called the pharmacy to let them know. My husband went back to the pharmacy on his way home from work. When he got there, they told him that they were out of stock but they would have them this afternoon. Another irritating moment. Now we were just in there a few hours before so why couldn't they tell us that then. I was a little frustrated for a while but once I remembered the fact that the appointment went well and that this was the biggest problem, I got over it.
The new ordeal is going to be adjusting to the new treatment plan and getting used to new medicine. I can deal with that. At least it is something. I just hope that the side effects don't end up being more than the benefits. If I can get to a place where I am not at an 8-10 daily on the pain scale, I will be on happy zipperhead!!!
Wednesday, November 7, 2012
Neurologist or Not?
Yesterday, I was supposed to go to the neurologist. My husband got off work, we got our son ready, and we drove all the way across town just to find out that SOMEHOW my appointment got cancelled and they didn't notify me. Had I not shown up, they would've charged me for taking up their time. Luckily, I kind of like this doctor and this is only strike one. They were able to reschedule me for Tuesday. I sat around all day, excited and anxious, hoping that I would get some answers. Even if there were just about the seizures, any answer would've been nice.
Ever since the diagnoses started rolling in, I feel like it has been a constant battle. A battle to either get people to believe me or to actually be proactive in trying to treat me. It's like they think that just because they did the decompression surgery, I should be fixed. Well in my opinion, maybe the fluid collections are causing some issues, maybe the needed to do the duraplasty, maybe there is scar tissue that is pressing on something, or maybe they should deal with the syrinx. I am getting to the end of my rope. I don't know how many more appointments I can take. I don't know how many more days walking around feeling the way I do I can take. I don't know how I am supposed to live my life like this.
I feel as if the doctor's just want to keep pushing meds on me. I spend hours on the internet in hopes that I can find something on my own that will explain why I feel the way I do. While I know that I am not a medical professional, if the doctors aren't going to take the time to figure it out, then I guess I have to. I find people with the same issues or symptoms and here they are getting treatments, or requiring further surgeries, or whatever. I am on the verge of a major breakdown. I guess it is time to start taking finding new doctors more seriously. The past couple few months have been absolute hell. I am only 28 years old and I just cannot sit back and accept that there is nothing they can do to help or that I have to spend decades more feeling like this. I am sick of feeling like a medical mystery. I am sick of hearing, "Well, let's try this and see if it helps.". Something has got to give.
Ever since the diagnoses started rolling in, I feel like it has been a constant battle. A battle to either get people to believe me or to actually be proactive in trying to treat me. It's like they think that just because they did the decompression surgery, I should be fixed. Well in my opinion, maybe the fluid collections are causing some issues, maybe the needed to do the duraplasty, maybe there is scar tissue that is pressing on something, or maybe they should deal with the syrinx. I am getting to the end of my rope. I don't know how many more appointments I can take. I don't know how many more days walking around feeling the way I do I can take. I don't know how I am supposed to live my life like this.
I feel as if the doctor's just want to keep pushing meds on me. I spend hours on the internet in hopes that I can find something on my own that will explain why I feel the way I do. While I know that I am not a medical professional, if the doctors aren't going to take the time to figure it out, then I guess I have to. I find people with the same issues or symptoms and here they are getting treatments, or requiring further surgeries, or whatever. I am on the verge of a major breakdown. I guess it is time to start taking finding new doctors more seriously. The past couple few months have been absolute hell. I am only 28 years old and I just cannot sit back and accept that there is nothing they can do to help or that I have to spend decades more feeling like this. I am sick of feeling like a medical mystery. I am sick of hearing, "Well, let's try this and see if it helps.". Something has got to give.
Monday, November 5, 2012
Plans for my day have changed
Well, I was supposed to go see my Pain Management doctor today but that isn't going to happen. I am going to have to reschedule and since I am unable to give 24 hour notice, I am going to have to pay $35. I woke up this morning with a terrible headache and feeling really sick. Neither one of my nausea medicines are helping. I really can't wait until I wake up one morning and feel good. Heck, I can't wait to stop having new problems pop up all the time. As soon as I begin to accept one thing, another gets added to my plate. It feels like a never ending ordeal.
I am kinda glad that I won't be able to go. When I saw him the first time, he knew what Chiari Malformation was but I had to explain a lot about it to him. I have just been having that gut feeling that he wouldn't do anything anyways. I just have the feeling that he was going to tell me to either keep taking the medicine I am already on or keep working with my other doctors to see what they want to do. I hate having to see multiple doctors. I just wish that I could only have to see one doctor. When all of this started, I thought that they would all be talking to each other to try to come up with a plan for me but that doesn't seem to be the case.
As far as the Chiari and Syringomyelia is going, there doesn't seem to be any improvement. The only thing that has changed is that my incision no longer hurts but inside near the surgical area is still causing me severe pain. My others symptoms seem to either be staying the same with some getting worse. I knew going into the surgery that there was a big chance that it wouldn't change anything. The bad part is, I had my hopes up that I was going to be one of the lucky ones. I had the idea in my head that either all my symptoms were going to disappear or I was only going to have a few lingering ones,
Tomorrow I have yet another neurologist appointment. I am actually kind of excited about that. I am anxious to see if him and my surgeon have discussed anything and have tried to come up with a plan. The last I head, the surgeon wanted to neurologists notes. For 2 months, the surgeon's office acted like they really didn't want to give me the time of day and now all of a sudden, they want to act like they care. Today has been one week since my last seizure. I am very happy about that. We still don't know why I am having them. No one seems to know if they are regular seizures or a side effect from my brain surgery.
Walking around like this every day is becoming so exhausting and depressing. I don't even want to leave my house anymore and when I do, 90% of the time it is to go to the doctor. The doctors that want to take you seriously can't really do anything since they aren't specialists and the ones who are, a lot of them seem to have the God complex. All I am asking for is to be in less pain, and to get some answers. I just want to be able to live as normal of a life as I possibly can.
I am kinda glad that I won't be able to go. When I saw him the first time, he knew what Chiari Malformation was but I had to explain a lot about it to him. I have just been having that gut feeling that he wouldn't do anything anyways. I just have the feeling that he was going to tell me to either keep taking the medicine I am already on or keep working with my other doctors to see what they want to do. I hate having to see multiple doctors. I just wish that I could only have to see one doctor. When all of this started, I thought that they would all be talking to each other to try to come up with a plan for me but that doesn't seem to be the case.
As far as the Chiari and Syringomyelia is going, there doesn't seem to be any improvement. The only thing that has changed is that my incision no longer hurts but inside near the surgical area is still causing me severe pain. My others symptoms seem to either be staying the same with some getting worse. I knew going into the surgery that there was a big chance that it wouldn't change anything. The bad part is, I had my hopes up that I was going to be one of the lucky ones. I had the idea in my head that either all my symptoms were going to disappear or I was only going to have a few lingering ones,
Tomorrow I have yet another neurologist appointment. I am actually kind of excited about that. I am anxious to see if him and my surgeon have discussed anything and have tried to come up with a plan. The last I head, the surgeon wanted to neurologists notes. For 2 months, the surgeon's office acted like they really didn't want to give me the time of day and now all of a sudden, they want to act like they care. Today has been one week since my last seizure. I am very happy about that. We still don't know why I am having them. No one seems to know if they are regular seizures or a side effect from my brain surgery.
Walking around like this every day is becoming so exhausting and depressing. I don't even want to leave my house anymore and when I do, 90% of the time it is to go to the doctor. The doctors that want to take you seriously can't really do anything since they aren't specialists and the ones who are, a lot of them seem to have the God complex. All I am asking for is to be in less pain, and to get some answers. I just want to be able to live as normal of a life as I possibly can.
Friday, November 2, 2012
Just a little update.
This week has been one of the worst I have had. Some one the symptoms that were calming down a little are now back with a vengeance. My numbness and tingling, throughout my whole body, is back to being extremely difficult to deal with. The arms/hands and legs/feet, seem to be the worse. I also feel like my sciatic nerve is acting up. I am completely numb from the middle of my abdomen to the middle of my thighs. It's getting so bad again that I am also having a lot of facial numbness as well.
Over the past week, my vision seems to be getting worse. My left eye, which is usually the one that gives me the least amount of trouble is getting blurrier. My right eye is getting worse and all feels like it is foggy and doesn't seem like it's going to be going away anytime soon. I have been having to wear my glasses, which I haven't done in years. They don't even seem to be making a huge difference, so I guess a new eye exam is going to be in my future.
Luckily, the seizures haven't been to bad this week. Today is day 4 without any. I have a few on Monday that has caused my legs to still be very sore. The medicine they have me on hasn't completely stopped them yet, but it has calmed them down. I am thankful for that. I usually have somewhat of an indication when they are going to hit but I am terrified that one is going to hit and I won't have any notice. I am worried that I'm going to end up falling and getting hurt. The only person home all day with me is my 4 year old. The only thing he would really be able to do is get my phone so I can call my husband.
My whole body has been feeling a little wobbly. When I stand up, I get a head rush or dizzy feeling every time. Once I get that settled down, I end up walking around like I'm drunk. Stumbling, walking into things, and feeling like I am going to fall over. I have been dropping things a lot again and sometimes having trouble grasping things.I am just hoping that something serious doesn't happen. My whole body feels so weak. I have headaches/migraines every day. I have managed to get the nausea under control except when the headaches are bad. If I am up for too long, my left leg gets to the point where it feels like I can't pick it up off the ground. It more or less just scoots as I am walking.
Sleeping is getting worse again. I was doing okay for a while but now it just doesn't want to happen. I am just so uncomfortable and in so much pain that no matter what I try, I am unable to get even semi comfortable. It is taking me forever to fall asleep. When I wake up in the mornings, it feels as though haven't slept at all. I am just so tired all the time. I feel like I can't do my part around here and it is getting to be very frustrating. I know that I need to take it easy, which I have been, but with my obsessive personality, looking around at things that I could be doing is driving me insane!
To say the least, I am very angry about all of this. I am angry that every day is a new or worsened problem. Sometimes, I feel broken and then sometimes I believe that I can make it though. I know that this makes me sound weak, even though I am actually a very strong woman, but there are times when I feel like I can't handle anymore. I haven't even had the chance to deal with all of my issues because my doctors want to get the bigger things under control first.
Over the past week, my vision seems to be getting worse. My left eye, which is usually the one that gives me the least amount of trouble is getting blurrier. My right eye is getting worse and all feels like it is foggy and doesn't seem like it's going to be going away anytime soon. I have been having to wear my glasses, which I haven't done in years. They don't even seem to be making a huge difference, so I guess a new eye exam is going to be in my future.
Luckily, the seizures haven't been to bad this week. Today is day 4 without any. I have a few on Monday that has caused my legs to still be very sore. The medicine they have me on hasn't completely stopped them yet, but it has calmed them down. I am thankful for that. I usually have somewhat of an indication when they are going to hit but I am terrified that one is going to hit and I won't have any notice. I am worried that I'm going to end up falling and getting hurt. The only person home all day with me is my 4 year old. The only thing he would really be able to do is get my phone so I can call my husband.
My whole body has been feeling a little wobbly. When I stand up, I get a head rush or dizzy feeling every time. Once I get that settled down, I end up walking around like I'm drunk. Stumbling, walking into things, and feeling like I am going to fall over. I have been dropping things a lot again and sometimes having trouble grasping things.I am just hoping that something serious doesn't happen. My whole body feels so weak. I have headaches/migraines every day. I have managed to get the nausea under control except when the headaches are bad. If I am up for too long, my left leg gets to the point where it feels like I can't pick it up off the ground. It more or less just scoots as I am walking.
Sleeping is getting worse again. I was doing okay for a while but now it just doesn't want to happen. I am just so uncomfortable and in so much pain that no matter what I try, I am unable to get even semi comfortable. It is taking me forever to fall asleep. When I wake up in the mornings, it feels as though haven't slept at all. I am just so tired all the time. I feel like I can't do my part around here and it is getting to be very frustrating. I know that I need to take it easy, which I have been, but with my obsessive personality, looking around at things that I could be doing is driving me insane!
To say the least, I am very angry about all of this. I am angry that every day is a new or worsened problem. Sometimes, I feel broken and then sometimes I believe that I can make it though. I know that this makes me sound weak, even though I am actually a very strong woman, but there are times when I feel like I can't handle anymore. I haven't even had the chance to deal with all of my issues because my doctors want to get the bigger things under control first.
What is Chiari Malformation and Syringomyelia?
I don't know who all has been reading this so I thought I would put a little info on here for those who don't know.
There are many symptoms associated with this condition that many are unaware of.
A lot of these symptoms make it hard for people with Chiari to live a normal life. Sometimes, even the simplest tasks are very difficult. Some of us are worse than others. Sometimes, Chiari Malformation is found by accident when looking for another issue. Some people have no symptoms while others have multiple or all of them. We are constantly faced with some issue when it comes to doing things. Chiarians are either unable to do it period or know that if they do, they will be paying for it later. It is potentially a very disabling thing.
There are too many people, especially doctors, out there who know nothing about it or haven't even heard of it. Awareness is so important. If more people were knowledgeable, maybe we would be treated correctly or not be told that there is nothing wrong with us.
Those of us who face Syringomyelia as well, can have even more symptoms to deal with on a daily basis. This condition and Chiari Malformation, a lot of times, go hand in hand.
Neither one of these conditions have cures. All we can do is try to treat the symptoms, which doesn't always work. Sometimes, by the time they are discovered, the damage has already been done. If left untreated, paralysis and rarely, death may occur. Some people end up in wheel chairs while others are able to go about their normal lives. This is why we need to create more awareness so that maybe one day, someone can find a cure. Doctors need to be more aware of these conditions, as well as the many others associated with them, can be treated correctly.
There are many symptoms associated with this condition that many are unaware of.
A lot of these symptoms make it hard for people with Chiari to live a normal life. Sometimes, even the simplest tasks are very difficult. Some of us are worse than others. Sometimes, Chiari Malformation is found by accident when looking for another issue. Some people have no symptoms while others have multiple or all of them. We are constantly faced with some issue when it comes to doing things. Chiarians are either unable to do it period or know that if they do, they will be paying for it later. It is potentially a very disabling thing.
There are too many people, especially doctors, out there who know nothing about it or haven't even heard of it. Awareness is so important. If more people were knowledgeable, maybe we would be treated correctly or not be told that there is nothing wrong with us.
Those of us who face Syringomyelia as well, can have even more symptoms to deal with on a daily basis. This condition and Chiari Malformation, a lot of times, go hand in hand.
Wednesday, October 31, 2012
Questioning this life and why so much has to happen
I know this blog says it is about Chiari and Syringomyelia. I started it to get my thoughts out and maybe help someone, even if it is just one person. I have learned that it is actually helping me a lot by giving me an outlet for my feelings, anger, frustration, etc. While every post may not be only about these issues, all of this has to do with the things I face on a daily basis because of them.
I know that some people say that you aren't supposed to question some things because everything happens for a reason. I don't know what I believe that anymore. I want to question, and I want answers. These things that are supposed to happen for a reason to teach us, I call bullshit! I don't see why anyone, especially children should have to live their lives in constant pain. I don't see why we have to go to doctor after doctor and be told there is nothing wrong with us when we know that there is. I don't see why we have to give up doing things that we love, not being able to do all the things we want or need to do because of how we will feel afterwards. I have heard it and said it many times myself that life isn't fair but all of these conditions, illnesses, and diseases are definitely not fair.
So many people take their good health for granted while the people who are sick consider doing whatever it takes to just try to be able to live a normal life. I went from take a couple medications for pain to 8 medications a day, totaling 17 or more pills a day. I had my brain surgery thinking that it would help and boy was I wrong. I will never regret my decision to have it because if I wouldn't have, I would've always wondered if it would've helped. I have gotten to the point where I would probably let them try absolutely anything on me to try to make my situation better.
I know that I am not a bad wife or mother, but that is how I feel anymore. My husband works all day long and has to take care of things around the house and do most of the work with our son. My son is getting the short end of the stick because there are so many things that he wants to do and that I would love to do with him, but I am just unable to most of the time. I hate that I have to spend so much time relaxing to try to avoid things getting worse. My house, to most people, is fine, but to me, IT'S A DISASTER AREA! I wanted to get up and do some work but when your calves hurt so bad from having seizures that you can barely walk, it's kind of hard to do that. Being that it is Halloween and I will do whatever it takes to make my son's life the greatest, I figure I should take it easy so we can go out and enjoy watching him go trick or treating.
All of this has been so difficult. Way more so than I expected. It seems like every time I go to the doctor, something new is added to my plate. The past few months have been such a blur. Things are getting worse and worse by the day. I can handle it taking it's toll on my but it isn't right that it takes it's toll on my family and friends. I hate that my son isn't old enough to fully understand what is wrong with mommy. He gets so heartbroken when we wants me to do something with him and I can't. I try my hardest to not let him see my melt downs or seizures. I try so hard to not scare him. I try so hard to keep his life and routine normal. I try to not to complain to my family or friends because I don't want them to worry too much. There are times I even question telling them when anything happens because they are so far away and I don't want them to feel bad that they can't be here to help. What are you supposed to do though? 24/7 pain, I don't sleep much because I am in so much pain, I feel that my eye sight is getting worse. My right eye feels foggy. I feel like a major melt down is going to happen at any moment. I have to fight and hold back my tears at all times so people don't see me being weak. All I manage to get from the doctors is being told I'm okay or here's another medicine. There has to be a point when things start getting better instead of worse, but I don't foresee that being anytime soon.
I know that some people say that you aren't supposed to question some things because everything happens for a reason. I don't know what I believe that anymore. I want to question, and I want answers. These things that are supposed to happen for a reason to teach us, I call bullshit! I don't see why anyone, especially children should have to live their lives in constant pain. I don't see why we have to go to doctor after doctor and be told there is nothing wrong with us when we know that there is. I don't see why we have to give up doing things that we love, not being able to do all the things we want or need to do because of how we will feel afterwards. I have heard it and said it many times myself that life isn't fair but all of these conditions, illnesses, and diseases are definitely not fair.
So many people take their good health for granted while the people who are sick consider doing whatever it takes to just try to be able to live a normal life. I went from take a couple medications for pain to 8 medications a day, totaling 17 or more pills a day. I had my brain surgery thinking that it would help and boy was I wrong. I will never regret my decision to have it because if I wouldn't have, I would've always wondered if it would've helped. I have gotten to the point where I would probably let them try absolutely anything on me to try to make my situation better.
I know that I am not a bad wife or mother, but that is how I feel anymore. My husband works all day long and has to take care of things around the house and do most of the work with our son. My son is getting the short end of the stick because there are so many things that he wants to do and that I would love to do with him, but I am just unable to most of the time. I hate that I have to spend so much time relaxing to try to avoid things getting worse. My house, to most people, is fine, but to me, IT'S A DISASTER AREA! I wanted to get up and do some work but when your calves hurt so bad from having seizures that you can barely walk, it's kind of hard to do that. Being that it is Halloween and I will do whatever it takes to make my son's life the greatest, I figure I should take it easy so we can go out and enjoy watching him go trick or treating.
All of this has been so difficult. Way more so than I expected. It seems like every time I go to the doctor, something new is added to my plate. The past few months have been such a blur. Things are getting worse and worse by the day. I can handle it taking it's toll on my but it isn't right that it takes it's toll on my family and friends. I hate that my son isn't old enough to fully understand what is wrong with mommy. He gets so heartbroken when we wants me to do something with him and I can't. I try my hardest to not let him see my melt downs or seizures. I try so hard to not scare him. I try so hard to keep his life and routine normal. I try to not to complain to my family or friends because I don't want them to worry too much. There are times I even question telling them when anything happens because they are so far away and I don't want them to feel bad that they can't be here to help. What are you supposed to do though? 24/7 pain, I don't sleep much because I am in so much pain, I feel that my eye sight is getting worse. My right eye feels foggy. I feel like a major melt down is going to happen at any moment. I have to fight and hold back my tears at all times so people don't see me being weak. All I manage to get from the doctors is being told I'm okay or here's another medicine. There has to be a point when things start getting better instead of worse, but I don't foresee that being anytime soon.
Tuesday, October 30, 2012
Raising Awareness
While trying to keep my mind off of all my health issues, I have been contemplating doing something to raise awareness and money to help with research. I think I would also like to find a way to raise money for those who need to surgery but can't afford it. If more and more people are getting diagnosed with this condition, why is no one doing anything to educate our doctors and others. It seems like every time I see a doctor, I have to not only explain the Chiari and Syringomyelia, but also what my surgery entailed. I am the patient, so yes I should know my issues but these doctors went to school for years and have no clue. It's like as soon as they graduated medical school, they don't want to learn anything else. It drives me insane.
I haven't figured out what I want to do yet. I am still working on it. But I need something to do to keep my mind off of all the bad and focus on something good. Not only our conditions are being affected, a lot of others are too. If we can't feel comfortable going to a doctor when you have a problem, it makes you feel like your back is against the wall. I'm getting to the point of giving up on doctor's for answers.
My husband has been spending a lot of time looking about specialists and information. We are seriously considering this route. I am very lucky in the sense that he is in the Army and I have great insurance that has covered everything. I am also lucky that I have a husband who is by my side every step of the way. All of the problems, a lot of men would've already ran. Every time something new happens or I am having my same issues but they are intensified, I dread having to go to any doctor. I seriously have to think about it for a long time because I know that they are just going to have the same tests done, given some medicine, and sent home.
I haven't figured out what I want to do yet. I am still working on it. But I need something to do to keep my mind off of all the bad and focus on something good. Not only our conditions are being affected, a lot of others are too. If we can't feel comfortable going to a doctor when you have a problem, it makes you feel like your back is against the wall. I'm getting to the point of giving up on doctor's for answers.
My husband has been spending a lot of time looking about specialists and information. We are seriously considering this route. I am very lucky in the sense that he is in the Army and I have great insurance that has covered everything. I am also lucky that I have a husband who is by my side every step of the way. All of the problems, a lot of men would've already ran. Every time something new happens or I am having my same issues but they are intensified, I dread having to go to any doctor. I seriously have to think about it for a long time because I know that they are just going to have the same tests done, given some medicine, and sent home.
Monday, October 29, 2012
Just one of those days :(
I hate these days when life is horrible as soon as I wake up. With my conditions, I wish I could know what to expect every morning when I wake up. Everything changes from one day to the next. All though they have all been had anymore, I would at least like to take the minimum. I wake up every morning and take 7 pills, the I take 3 pills two more times throughout the day and 7 again before bed. I also have a patch that I have to change every 72 hours. I'm 28 years old. Come on now. I shouldn't have to be dealing with all of this yet. I am also still waiting on another medicine for my high cholesterol by the doctor wants to hold off on it until they figure everything else out.
This morning I woke up in EXTREME pain. The numbness and tingling are worse than they have been in a while. I had gotten used to the normal amount that I have, but when the really bad days hit, I just want to cry. There are even parts of my body that I can't feel at all. I have managed to drop just about everything I have picked up today. Luckily, I was able to keep ahold of my hot cup of coffee. I have walked into about 10 different things and it's only been an hour and a half. I text my husband to say good morning and he asked me if I remember stretching my arms out and putting them on his chest at 4:30 am. I don't remember anything. He told me that he thought I may have been having another seizure but after watching, I seemed fine. Now this stuff wants to start happening in my sleep too. I have a feeling after talking to him about it that it was a seizure. When I finally decided to get out of bed, I was in a lot of pain, just like after all my other episodes. My arms, shoulders, and neck were killing me.
We are still waiting for the neurologist to call back about the results of the EEG I took last week and hopefully get some incite into the problem and what the neurosurgeon is thinking. I am not the type of person who likes to sit back and wait. I want to know every possibility to look it up and have time to digest it. I think my husband wants answers even more than I do. I know that all of this scares him and that he wants to take away all the pain. It's difficult to say the least. Like I have said before, I feel horrible that everyone around me has to deal with this as well.
My vision seems to be getting worse. Everything is really blurry. I used to be able to focus when I really needed to but that isn't the case anymore. I know that I need to get and eye exam, but since I am already unable to drive, I figure I can put it off a little longer until we have extra money to get new glasses. I am having some problems swallowing. Food doesn't seem to be much of an issue, but liquids are. I have to try and try to get them down.
When I saw my PCM the other day, I wanted to ask her about something for the depression and anxiety. Of course, I had to have a seizure while waiting for her so my whole appointment with her was kind of a blur and confusing. I don't really want to add any more medicines, but I am slowly slipping farther into the depression. I hate all of this because I want to be happy for myself and my family. Having all of this on my plate 24/7 is breaking me. I have my times when I am okay and accept it but then there are the days when I am still so angry and upset. I have anxiety attacks on almost a daily basis. I don't get why things have to keep piling up. Why can't people have one problem to deal with instead of adding to them all the time.
This morning I woke up in EXTREME pain. The numbness and tingling are worse than they have been in a while. I had gotten used to the normal amount that I have, but when the really bad days hit, I just want to cry. There are even parts of my body that I can't feel at all. I have managed to drop just about everything I have picked up today. Luckily, I was able to keep ahold of my hot cup of coffee. I have walked into about 10 different things and it's only been an hour and a half. I text my husband to say good morning and he asked me if I remember stretching my arms out and putting them on his chest at 4:30 am. I don't remember anything. He told me that he thought I may have been having another seizure but after watching, I seemed fine. Now this stuff wants to start happening in my sleep too. I have a feeling after talking to him about it that it was a seizure. When I finally decided to get out of bed, I was in a lot of pain, just like after all my other episodes. My arms, shoulders, and neck were killing me.
We are still waiting for the neurologist to call back about the results of the EEG I took last week and hopefully get some incite into the problem and what the neurosurgeon is thinking. I am not the type of person who likes to sit back and wait. I want to know every possibility to look it up and have time to digest it. I think my husband wants answers even more than I do. I know that all of this scares him and that he wants to take away all the pain. It's difficult to say the least. Like I have said before, I feel horrible that everyone around me has to deal with this as well.
My vision seems to be getting worse. Everything is really blurry. I used to be able to focus when I really needed to but that isn't the case anymore. I know that I need to get and eye exam, but since I am already unable to drive, I figure I can put it off a little longer until we have extra money to get new glasses. I am having some problems swallowing. Food doesn't seem to be much of an issue, but liquids are. I have to try and try to get them down.
When I saw my PCM the other day, I wanted to ask her about something for the depression and anxiety. Of course, I had to have a seizure while waiting for her so my whole appointment with her was kind of a blur and confusing. I don't really want to add any more medicines, but I am slowly slipping farther into the depression. I hate all of this because I want to be happy for myself and my family. Having all of this on my plate 24/7 is breaking me. I have my times when I am okay and accept it but then there are the days when I am still so angry and upset. I have anxiety attacks on almost a daily basis. I don't get why things have to keep piling up. Why can't people have one problem to deal with instead of adding to them all the time.
Saturday, October 27, 2012
At a Stand Still
This whole journey has been a struggle. For years and years, all I wanted was an answer to why I was in pain. I went to doctor after doctor looking for that answer. Now that I have it, I almost wish I would've never known. Nothing they are trying is working. I wake up feeling bad, I spend the whole day feeling bad, and I go to bed feeling bad. It sucks! I go to this doctor and that doctor. One tells me one thing while another tells me something different. Why can't they all just get together and do something. No person should have to go through every day of their life feeling this bad.No one should have to make every decision based on how it's going to make them feel. I should be able to play with my son, have fun with my family and friends. Do things that aren't going to make me hurt or things that may make me hurt but not be judged because I need a break too.
They change my medicines or try me on new ones. Still no relief. There comes a point in time where you just want to give up. I am at the point in all of this where I would try absolutely anything to have a break. I want to be able to enjoy my life. I want to be able to take care of my family. If it weren't for my support system, I would probably have already given up and checked myself in somewhere. I don't know what else to do. I don't know how to explain how I feel or how to get them to understand the magnitude of pain that I feel.
The seizure medicine is calming them but not stopping them. I have had 6 this week alone. They are so frustrating. I am sore and have scratches. The Chiari symptoms have become worse since my decompression surgery. I have the constant feeling of pressure in my spine, neck, ears and head. 2 months after surgery, the back of my head still kills me. Pain pill, muscle relaxers, fibromyalgia medicine, sea sick patches, what's the use. Every time I stand up, I feel like I am going to fall over. I'm sure people are going to start thinking I'm crazy when I stand up and just straight away have to sit down in some random place. I even feel dizzy sitting down. Something has got to give! The headaches/migraines are present constantly. Again, WHAT DO YOU DO?
The doctors finally want to talk to each other, but no one wants to talk to me. I am the patient. I am the one going through all of this. How about you let me in on what you are thinking. Don't wait until the last minute and say this is what we are going to do. I am sick of my health impacting everyone else. I can handle it for me, but it is unfair that everyone else should have to worry or plan around me. I question in my head all the time, Am I ever going to feel normal again? Am I ever going to be able to do things like a normal person? I spend just about all of my waking time thinking about this. I even dream about it. Of course, that is when I am actually sleeping! When I can actually get semi comfortable.
I just don't know anymore. All I know is that I have to find the energy somewhere to keep fighting for answers. Fighting for my life. Fighting for the lives of others. Try to make a difference. Try to get doctors to understand that just because someone looks okay on the outside, doesn't mean they are okay.
They change my medicines or try me on new ones. Still no relief. There comes a point in time where you just want to give up. I am at the point in all of this where I would try absolutely anything to have a break. I want to be able to enjoy my life. I want to be able to take care of my family. If it weren't for my support system, I would probably have already given up and checked myself in somewhere. I don't know what else to do. I don't know how to explain how I feel or how to get them to understand the magnitude of pain that I feel.
The seizure medicine is calming them but not stopping them. I have had 6 this week alone. They are so frustrating. I am sore and have scratches. The Chiari symptoms have become worse since my decompression surgery. I have the constant feeling of pressure in my spine, neck, ears and head. 2 months after surgery, the back of my head still kills me. Pain pill, muscle relaxers, fibromyalgia medicine, sea sick patches, what's the use. Every time I stand up, I feel like I am going to fall over. I'm sure people are going to start thinking I'm crazy when I stand up and just straight away have to sit down in some random place. I even feel dizzy sitting down. Something has got to give! The headaches/migraines are present constantly. Again, WHAT DO YOU DO?
The doctors finally want to talk to each other, but no one wants to talk to me. I am the patient. I am the one going through all of this. How about you let me in on what you are thinking. Don't wait until the last minute and say this is what we are going to do. I am sick of my health impacting everyone else. I can handle it for me, but it is unfair that everyone else should have to worry or plan around me. I question in my head all the time, Am I ever going to feel normal again? Am I ever going to be able to do things like a normal person? I spend just about all of my waking time thinking about this. I even dream about it. Of course, that is when I am actually sleeping! When I can actually get semi comfortable.
I just don't know anymore. All I know is that I have to find the energy somewhere to keep fighting for answers. Fighting for my life. Fighting for the lives of others. Try to make a difference. Try to get doctors to understand that just because someone looks okay on the outside, doesn't mean they are okay.
Friday, October 26, 2012
A Big Thank You To My Support System
Anyone with an illness knows that you will have those who believe you and those who don't. That is the case with me. I am so lucky to have a great support system. Even though most of my family and friends are hundreds of miles away, they have been there for me the best they could. They have listened to me cry, complain, and be angry. They have offered to come if I ever needed them here with me and are checking on me constantly. I will always love them for that. Even people I don't know or who I haven't talked to in years have shown their support. It truly is amazing. I have gotten closer to some friends through all of this and been shown who truly cares. I have even found friends in some that I have never even met before. I appreciate every single one of you.
My biggest supporter has been my husband. He has been to every appointment, picked up my medicine, drove me around since I am unable to do so. He has been going to work all day and then coming home and taking care of me, our son, and the house. He will stop at the store before coming home for whatever little thing it is we need without a single complaint. He will bring me flowers on my bad days or take care of our son to allow me to rest. I couldn't ask for anyone better. Even though I know he is tired, he won't admit it and just keeps going. He makes sure that I have everything I need before thinking about himself. He is in the Army, and for those of you who know that life, know how stressful it is and then to add all my health issues to it. I am so lucky that I found such a great man, so early in my life, that stands beside me. He is so determined to get the answers we need. Go to specialists, do this, or do that. When I feel I have given up hope, he is there to keep me going. He keeps track of everything that I can't sometimes remember. He talks to doctors when I am unable to do so. I appreciate every last thing he is doing and I will forever love him for all of this. I have no clue how I will ever repay him for everything he does. I know that I will be with this man until my last day on earth.
To the ones who choose not to believe the pain and struggles I am dealing with, forget them. I got angry for a while but what good is that going to do. If they don't want to believe me or say I am just out for drugs or whatever, let them live a day in my shoes. I can no longer go around worrying what they think. From now on, I am only going to let them push me to get all the diagnoses I need and rub it in their faces. All that matters now is that the ones who truly matter have my side and those who don't, I don't need them in my life.
My biggest supporter has been my husband. He has been to every appointment, picked up my medicine, drove me around since I am unable to do so. He has been going to work all day and then coming home and taking care of me, our son, and the house. He will stop at the store before coming home for whatever little thing it is we need without a single complaint. He will bring me flowers on my bad days or take care of our son to allow me to rest. I couldn't ask for anyone better. Even though I know he is tired, he won't admit it and just keeps going. He makes sure that I have everything I need before thinking about himself. He is in the Army, and for those of you who know that life, know how stressful it is and then to add all my health issues to it. I am so lucky that I found such a great man, so early in my life, that stands beside me. He is so determined to get the answers we need. Go to specialists, do this, or do that. When I feel I have given up hope, he is there to keep me going. He keeps track of everything that I can't sometimes remember. He talks to doctors when I am unable to do so. I appreciate every last thing he is doing and I will forever love him for all of this. I have no clue how I will ever repay him for everything he does. I know that I will be with this man until my last day on earth.
To the ones who choose not to believe the pain and struggles I am dealing with, forget them. I got angry for a while but what good is that going to do. If they don't want to believe me or say I am just out for drugs or whatever, let them live a day in my shoes. I can no longer go around worrying what they think. From now on, I am only going to let them push me to get all the diagnoses I need and rub it in their faces. All that matters now is that the ones who truly matter have my side and those who don't, I don't need them in my life.
Thursday, October 25, 2012
A Visit to My Primary Care Manager
So, today was the day that I was supposed to go deal with my high cholesterol. That didn't happen. I hadn't felt good all day. I tried everything, including an early nap to try to relieve some of my issues. Since I woke up this morning, I had the normal headache, pain, nausea, pressure, vision disturbances, and the dizzy/head rush feeling every time I stood up. My husband came home and I managed to get ready and get out the door. I warned him before we left that I had been feeling dizzy so to stay close. We got to the clinic a little early so we decided to stop and get a snack thinking that it would help me feel a little better.
When we got to the doctor's office, I checked in and we took our son over to the play area. He had a blast. I just kept thinking to myself, at least he is finally having fun. I have been feeling so horrible and it upsets me that I haven't been able to do as many things with him as I wish I could. While sitting there waiting to be called, a mild seizure hit. I felt it coming on so I pulled my hubby closer to me and laid my head on his should. Next thing I knew, I was coming out of it and he said I had been out for about 7 minutes. Everything was so sore so I knew I must have tensed up. Luckily, it was really violent and there weren't any kids around to see it.
We finally got back into a room and while I was waiting for the doctor to come in, it hit again. This time was only about 2 minutes. The doctor came in not too long after so I was still kind of out of it. She started asking me questions and I just remember my husband starting to tell her what had changed and had been going on. After he explained the seizures and other issues to her, she started going over all of my test results. She wanted to run another round of labs on some things that had been high. She also started that she wanted to wait until my other issues were under control until she started me on any medicine for my cholesterol. Once that was addressed, she started in with the MRI results. She always takes more time to go over everything than the specialists do. In her opinion, she thought it would be best to let my team of specialists work together to figure out what needed to be done. I didn't have an issue with that since she is a great doctor and always does anything she can to help. She prescribed even more medicine. The dizziness and nausea have been so bad that she gave me some sea sick patches to wear that she said are given to people before they go on cruises to see if they would help. She also said that there was some fluid in my ears and prescribed some medicine for that and said that it could be either causing some of the dizziness or at least aggravating it. One of the things she said that upset me the most was that I wouldn't be able to drive until the seizures were under control for an entire year! BOOOOO!!!
Even though this wasn't my best appointment with her, it is nice to know that she is at least on my team. When we were done, we headed to the lab to get the blood draw. It took 2 people and 4 sticks before they finally got enough blood to run the tests. They kept getting right into the veins, but for some reason the blood would just not come out. They said I may be a little dehydrated, but after using a pediatric needle and a syringe, they got what they needed. It was finally over. I had had enough being there so I just asked my husband to pick my prescriptions up tomorrow instead of sitting there even long.
We came home and rested and my night decided to get more eventful. I felt bad that my son wanted to play so I decided to tolerate the pain and race him down the hallway. Right as I turned into my bedroom, I split 2 of my toes on the door and heard a crack. I swear, if something bad is going to happen, it will happen to me! My loving husband came and checked on me and finished getting things ready for bed. He carried everything to the room and made me an ice pack. I swear I don't know what I would do without that man. He has been there beside me through everything.
When we got to the doctor's office, I checked in and we took our son over to the play area. He had a blast. I just kept thinking to myself, at least he is finally having fun. I have been feeling so horrible and it upsets me that I haven't been able to do as many things with him as I wish I could. While sitting there waiting to be called, a mild seizure hit. I felt it coming on so I pulled my hubby closer to me and laid my head on his should. Next thing I knew, I was coming out of it and he said I had been out for about 7 minutes. Everything was so sore so I knew I must have tensed up. Luckily, it was really violent and there weren't any kids around to see it.
We finally got back into a room and while I was waiting for the doctor to come in, it hit again. This time was only about 2 minutes. The doctor came in not too long after so I was still kind of out of it. She started asking me questions and I just remember my husband starting to tell her what had changed and had been going on. After he explained the seizures and other issues to her, she started going over all of my test results. She wanted to run another round of labs on some things that had been high. She also started that she wanted to wait until my other issues were under control until she started me on any medicine for my cholesterol. Once that was addressed, she started in with the MRI results. She always takes more time to go over everything than the specialists do. In her opinion, she thought it would be best to let my team of specialists work together to figure out what needed to be done. I didn't have an issue with that since she is a great doctor and always does anything she can to help. She prescribed even more medicine. The dizziness and nausea have been so bad that she gave me some sea sick patches to wear that she said are given to people before they go on cruises to see if they would help. She also said that there was some fluid in my ears and prescribed some medicine for that and said that it could be either causing some of the dizziness or at least aggravating it. One of the things she said that upset me the most was that I wouldn't be able to drive until the seizures were under control for an entire year! BOOOOO!!!
Even though this wasn't my best appointment with her, it is nice to know that she is at least on my team. When we were done, we headed to the lab to get the blood draw. It took 2 people and 4 sticks before they finally got enough blood to run the tests. They kept getting right into the veins, but for some reason the blood would just not come out. They said I may be a little dehydrated, but after using a pediatric needle and a syringe, they got what they needed. It was finally over. I had had enough being there so I just asked my husband to pick my prescriptions up tomorrow instead of sitting there even long.
We came home and rested and my night decided to get more eventful. I felt bad that my son wanted to play so I decided to tolerate the pain and race him down the hallway. Right as I turned into my bedroom, I split 2 of my toes on the door and heard a crack. I swear, if something bad is going to happen, it will happen to me! My loving husband came and checked on me and finished getting things ready for bed. He carried everything to the room and made me an ice pack. I swear I don't know what I would do without that man. He has been there beside me through everything.
Wednesday, October 24, 2012
More tests and hoping for some answers
It's already been a long week and it's only Wednesday. I have felt terrible. I have a constant headache, pressure in my ears and head, sporadic seizures, and feel drained all the time. Monday morning I had to go into my neurologist and get hooked up for a 48 hour EEG with video monitoring. Let me tell you, that was fun. The same afternoon, I had to go to my dreaded neurosurgeon's office. I don't know if it was my head being wrapped up and full of wires, all the new symptoms, or the recent MRIs, but now they seem to care. The past 8 weeks, they haven't cared whatsoever, but now they want to call my neurologist to see what he is thinking. The nurse practitioner, who is definitely not on the top of my all time favorite people list, left the room to show the surgeon the MRIs. When she came back, she seemed as though there was something that needed to be said but wasn't. All she cared about was "When do you go have the EEG taken off?". I told her Wednesday and she informed me that they would be calling over to the neurologists office. I had a slight seizure during the visit so some of it is kind of blurry but I do recall her saying something about maybe the neurologist would want the surgeon to go back in and look around. They are still saying that he is happy with the decompression and the fluid will reabsorb on it's own. I just don't get it. I don't get why they just can't take the fluid out and see if it is causing any of these problems. It gave me a sick feeling in my gut. That same sick feeling when I know that something is up but haven't figured out what it is yet.
Tuesday went off without a hitch. No seizures but I felt like crap all day. I did manage to get some rest when my 4 year old would allow it. I wish there was some way to magically be better. I hate knowing that I have so many limitations. I want to be the best mom to him I can be, but right now I don't feel like that is happening. I try any way I know how to have some fun with him but it just feels like it's not enough. If this had to happen to me, why couldn't it happen when my son was old enough to truly understand what was going on. I know that it isn't my fault and there is nothing I can do about it, but I feel bad. It's just the type of person I am.
This morning, after being uncomfortable from the wires, carrying around the bag with the machine, having my head wrapped and burning up from it, and the 48 hour stalker, AKA the video camera, I was set free. We went in first thing this morning and got rid of it all. Luckily, yes it sounds weird, but luckily I had 2 seizures while I had the machine on, one on camera and one off. Hopefully it will show something and they will get some kind of answer as to what is going on. The assistant told me that she would get everything into the computer today and let me know as soon as the neurologist read it and what he wants to do.
It really has been a struggle the past few months. When I was originally diagnosed with Syringomyelia, I was okay. I told myself that we would deal with it and move on. Since August 1, things have truly changed forever for me. With everything else that has been thrown on my plate, it has gotten harder and harder almost by the day. The Syringomyelia, Chiari Malformation Type 1, degenerative disc disease in my cervical and thoracic spine,a protruding disc in my neck, episodes with pinched nerves, all the symptoms of the above, and high cholesterol. The list goes on and on. I have wanted answers for so long but I didn't expect all of this. Going into it, I really thought it would end up being something that could be cured and that I might have occasional pain from. WRONG!
Tuesday went off without a hitch. No seizures but I felt like crap all day. I did manage to get some rest when my 4 year old would allow it. I wish there was some way to magically be better. I hate knowing that I have so many limitations. I want to be the best mom to him I can be, but right now I don't feel like that is happening. I try any way I know how to have some fun with him but it just feels like it's not enough. If this had to happen to me, why couldn't it happen when my son was old enough to truly understand what was going on. I know that it isn't my fault and there is nothing I can do about it, but I feel bad. It's just the type of person I am.
This morning, after being uncomfortable from the wires, carrying around the bag with the machine, having my head wrapped and burning up from it, and the 48 hour stalker, AKA the video camera, I was set free. We went in first thing this morning and got rid of it all. Luckily, yes it sounds weird, but luckily I had 2 seizures while I had the machine on, one on camera and one off. Hopefully it will show something and they will get some kind of answer as to what is going on. The assistant told me that she would get everything into the computer today and let me know as soon as the neurologist read it and what he wants to do.
It really has been a struggle the past few months. When I was originally diagnosed with Syringomyelia, I was okay. I told myself that we would deal with it and move on. Since August 1, things have truly changed forever for me. With everything else that has been thrown on my plate, it has gotten harder and harder almost by the day. The Syringomyelia, Chiari Malformation Type 1, degenerative disc disease in my cervical and thoracic spine,a protruding disc in my neck, episodes with pinched nerves, all the symptoms of the above, and high cholesterol. The list goes on and on. I have wanted answers for so long but I didn't expect all of this. Going into it, I really thought it would end up being something that could be cured and that I might have occasional pain from. WRONG!
Thursday, October 18, 2012
Just a little self pity
I know that everyone goes through this when they are face with a life changing condition and now is mine. I know so many people that have problems that affect their day to day lives and I salute them for making it through. You can't help but wonder though, "Why me?". I know that may sound weak to some people but that is how I feel. Why do I have to go through all of this? Why do my family and friends have to worry and go through it? Why does anyone have to go through these problems? I know that without the bad times the good times aren't as good but sometimes you can't help but question.
I have many family members and friends with different conditions. I have family with very bad diabetes, pain problems, anxiety, and many other things. I have a very good friend who has Cystic Fibrosis and is in and out of the hospital so often that they might as well name a ward after her. They have all been inspirational to me. But, WHY??? Why is it the people who truly have something wrong with them get treated like they are okay? Why are the people in the most pain the ones that get treated like junkies and the people that are fine get handed everything to them when they complain about something so small? Why is it that just because you can't see something physically wrong with us on the outside, you think we are okay? Why is more money not being spent of research and finding ways to help? I may never know the answer to this but there is always going to be a why. I am just not the type of person that can accept things without at least trying to figure out why it is happening.
We are expected to go through our daily lives, acting like nothing is wrong. We should be able to clean house, go to work, take care of our families, or even try to have a little bit of fun. The problem is, when we do, even as we are doing it, we know that we will pay for it later. There are so many people out there that don't appreciate the things they have or the things they can do and feel fine. The rest of us try to be "normal" but sometimes we just can't. Me personally, I feel like because of all of this, I can't be the person I once was. It's harder to be the mother, wife, friend, sister, daughter, that I want to be. I almost feel like I'm not the best I can be and it kills me. It can be so depressing at times. You are faced with the conflict of letting those close to you know everything that is going on or to hold back some to try to not stress or worry them as much. I know that within time, and after hopefully getting some answers, I will get through this and be a stronger person for it.
I have many family members and friends with different conditions. I have family with very bad diabetes, pain problems, anxiety, and many other things. I have a very good friend who has Cystic Fibrosis and is in and out of the hospital so often that they might as well name a ward after her. They have all been inspirational to me. But, WHY??? Why is it the people who truly have something wrong with them get treated like they are okay? Why are the people in the most pain the ones that get treated like junkies and the people that are fine get handed everything to them when they complain about something so small? Why is it that just because you can't see something physically wrong with us on the outside, you think we are okay? Why is more money not being spent of research and finding ways to help? I may never know the answer to this but there is always going to be a why. I am just not the type of person that can accept things without at least trying to figure out why it is happening.
We are expected to go through our daily lives, acting like nothing is wrong. We should be able to clean house, go to work, take care of our families, or even try to have a little bit of fun. The problem is, when we do, even as we are doing it, we know that we will pay for it later. There are so many people out there that don't appreciate the things they have or the things they can do and feel fine. The rest of us try to be "normal" but sometimes we just can't. Me personally, I feel like because of all of this, I can't be the person I once was. It's harder to be the mother, wife, friend, sister, daughter, that I want to be. I almost feel like I'm not the best I can be and it kills me. It can be so depressing at times. You are faced with the conflict of letting those close to you know everything that is going on or to hold back some to try to not stress or worry them as much. I know that within time, and after hopefully getting some answers, I will get through this and be a stronger person for it.
Poked, Scanned, and Sent home.
Well, I got to spend another lovely evening in the ER last night. This time was a little different though. They were actually nice and didn't down play how I was feeling or blow me off. My husband came home from work and I was passed out on the couch. When I came to, I was so confused and he was just there. I never remember anything when this happens. I guess a few minutes later, I did it again and started having a mild seizure. Same thing happened. I don't remember and just woke up confused to him telling me what happened. I was fine for a couple minutes. He got me back on the couch and the third hit. I guess this one was a little worse with the tensing up. When I woke up, my neighbor was also there. I don't remember her even coming over. I asked what happened and he told me and said that she had come over while I was still awake. It was all a blur. She took my son next door to her house and kept him while we decided to go ahead and go get me checked out. The whole thing is just a blur. I just remember telling him that I was exhausted, confused, and had intense pressure and pain in the back of my head.
When we got to the ER, they put me in a nice room and immediately hooked me up to an IV and drew some blood for the doctor to run tests. The nurse was very friendly. The doctor came in and my husband and I explained it all to him. What had happened, the seizures, my having Chiari and Syringomyelia, my decompression surgery, etc. I even remember him just looking at me with this look like Oh my God! He even said that he felt like I was sending him back to medical school with all of it. I just kept thinking that it all seemed to easy and was waiting for whatever bad was going to happen. The ran labs, sent me for a CT Scan, and gave me some meds. The doctor said most likely he would be keeping me at least overnight just to watch things. All the tests came back normal.
The hospitalist finally came in and agreed that I would probably be staying so my husband left to go pick up out son since it was getting late and get him home to bed. I had no problem with this because I heard him on the phone crying that he wanted us. Living the life of a military family and being so far away from your family, you get used to these types of things. After the hospitalist was done talking, she went to consult a neurologist. She came back into the room and said that I would be able to go home. The neurologist didn't believe it would make a difference whether I stayed there or went home. All they wanted me to do was increase my dose of seizure medicine and get in with my neurologist sooner. That was fine with me. I knew that if I stayed and something else happened that it would be the best place for me and that they would be able to witness the episodes and maybe get some clue as to what was going on. On the other hand, I just wanted to be at home with my son and husband. I had never been so uncomfortable and just wanted to be in my own bed with my little family.
I'm not sure if this is related to my Chiari or the fluid collections I have around the posterior fossa but I do know, when the spells happen, I have extreme pain in that area. All I know to try to explain it to them is like I have been hit in the back of the head with a baseball bat.
When we got to the ER, they put me in a nice room and immediately hooked me up to an IV and drew some blood for the doctor to run tests. The nurse was very friendly. The doctor came in and my husband and I explained it all to him. What had happened, the seizures, my having Chiari and Syringomyelia, my decompression surgery, etc. I even remember him just looking at me with this look like Oh my God! He even said that he felt like I was sending him back to medical school with all of it. I just kept thinking that it all seemed to easy and was waiting for whatever bad was going to happen. The ran labs, sent me for a CT Scan, and gave me some meds. The doctor said most likely he would be keeping me at least overnight just to watch things. All the tests came back normal.
The hospitalist finally came in and agreed that I would probably be staying so my husband left to go pick up out son since it was getting late and get him home to bed. I had no problem with this because I heard him on the phone crying that he wanted us. Living the life of a military family and being so far away from your family, you get used to these types of things. After the hospitalist was done talking, she went to consult a neurologist. She came back into the room and said that I would be able to go home. The neurologist didn't believe it would make a difference whether I stayed there or went home. All they wanted me to do was increase my dose of seizure medicine and get in with my neurologist sooner. That was fine with me. I knew that if I stayed and something else happened that it would be the best place for me and that they would be able to witness the episodes and maybe get some clue as to what was going on. On the other hand, I just wanted to be at home with my son and husband. I had never been so uncomfortable and just wanted to be in my own bed with my little family.
I'm not sure if this is related to my Chiari or the fluid collections I have around the posterior fossa but I do know, when the spells happen, I have extreme pain in that area. All I know to try to explain it to them is like I have been hit in the back of the head with a baseball bat.
Sunday, October 7, 2012
Seizures...what else is going to happen!?!
Today was not a good day. My family has been here for a couple days visiting. I woke up this morning not feeling well at all. We had plans to take my parents to do some sight seeing and had already made the comment to my husband asking if we would mind if I stayed home. While waiting for everyone to get up and moving, it hit. I told my husband, "I don't feel good.". The next thing I knew I was waking up on the couch and they said I had a seizure. I seemed to be okay other than being exhausted. I was fine for a little bit and it hit again. Over about a couple hours, I had a few more. Each time I was able to feel them coming on and tell someone and each time they got more violent. I felt okay so I walked to my bedroom and it hit again. I yelled for my husband and laid down on the bed. He told me to try to move up on the bed more so I didn't fall of but I felt as though I couldn't move. My whole body just felt so heavy and limp. I guess I went into another one and just remember waking up with what I thought was vomit in my mouth and being told that an ambulance was one the way. Luckily, my mother-in-law was able to take my 4 year old to the neighbor's house so he didn't have to see mommy that way and being taken away in an ambulance. That is what scared me the most. I didn't want him to have to go through that.
When the EMT's arrived, I was in another fit. I finally woke up and was alert and answered a few of there questions. In my mind, at least medical professionals were there to see it and confirm what was happening. They loaded me on the stretcher and got me to the ambulance. Everything seemed to have calmed down. They took my vitals and got an IV started. They said that we would be to the hospital in 8-10 minutes due to traffic. Even though I was with it, it was all kind of a blur. I remember just telling the EMT, "I am so sorry." The next thing I know, I was waking up with the sirens on and could feel the ambulance weaving in and out of traffic. I was there. My mother told me that I had went into another fit and the EMT told the driver to "go hot". My heart rate had went up to 200 bpm and my blood pressure dropped all at the same time. Thankfully for me, I don't remember anything from when this happens. I am very glad about that. I was fine for a little while. The ER doctor, who I had seen previously, came to talk to me and everything seemed fine. He said that I was having grand mal seizures from what my family and the EMT's described. I remember talking to him and then nothing. It hit again. He himself got to witness them and confirmed that that is what he believed they were. I had a total of 7 or 8 that day in few hour time period. They gave me an IV does of seizure meds and managed to take a little nap. They gave me a prescription to start taking. He told me that he wasn't completely sure but they could be happening from the brain surgery and still being in recovery. Once the medicine was done, they discharged me and I was never so happy to go home in my life. My whole body was so sore from tensing up and I was more exhausted that I have even been in my life.
There was a problem though. This had happened before. About a week before my surgery, I was in the ER for the same thing. They weren't as bad though. They prescribed the same seizure meds. I didn't get them filled because I was to see my neurologist the next day. They went ahead and hooked me up and did a 24 hour EEG with a camera as well to see what happened should I go into another one. He wasn't convinced that they were seizures and actually thought I was just passing out and said that they twitching and tensing up could happen during it. Nothing happened of course. He told me not to take the Keppra and to have my surgery and see what happened. Now I am left wondering, why is this happening? Why is all of this stuff happening all at once?
Since the last incident, I have been taking the meds as prescribed and haven't had anymore since. I am thankful for that. It kills me more that my family has to go through all of this and constantly worry about me. I have to follow up with my neurologist again. They said it could never happen again. They said that it could resolve on it's own and in time I might not have to take the medicine anymore. I can't drive, I have everyone constantly worrying about me being at home alone with my son while my husband is at work.
When the EMT's arrived, I was in another fit. I finally woke up and was alert and answered a few of there questions. In my mind, at least medical professionals were there to see it and confirm what was happening. They loaded me on the stretcher and got me to the ambulance. Everything seemed to have calmed down. They took my vitals and got an IV started. They said that we would be to the hospital in 8-10 minutes due to traffic. Even though I was with it, it was all kind of a blur. I remember just telling the EMT, "I am so sorry." The next thing I know, I was waking up with the sirens on and could feel the ambulance weaving in and out of traffic. I was there. My mother told me that I had went into another fit and the EMT told the driver to "go hot". My heart rate had went up to 200 bpm and my blood pressure dropped all at the same time. Thankfully for me, I don't remember anything from when this happens. I am very glad about that. I was fine for a little while. The ER doctor, who I had seen previously, came to talk to me and everything seemed fine. He said that I was having grand mal seizures from what my family and the EMT's described. I remember talking to him and then nothing. It hit again. He himself got to witness them and confirmed that that is what he believed they were. I had a total of 7 or 8 that day in few hour time period. They gave me an IV does of seizure meds and managed to take a little nap. They gave me a prescription to start taking. He told me that he wasn't completely sure but they could be happening from the brain surgery and still being in recovery. Once the medicine was done, they discharged me and I was never so happy to go home in my life. My whole body was so sore from tensing up and I was more exhausted that I have even been in my life.
There was a problem though. This had happened before. About a week before my surgery, I was in the ER for the same thing. They weren't as bad though. They prescribed the same seizure meds. I didn't get them filled because I was to see my neurologist the next day. They went ahead and hooked me up and did a 24 hour EEG with a camera as well to see what happened should I go into another one. He wasn't convinced that they were seizures and actually thought I was just passing out and said that they twitching and tensing up could happen during it. Nothing happened of course. He told me not to take the Keppra and to have my surgery and see what happened. Now I am left wondering, why is this happening? Why is all of this stuff happening all at once?
Since the last incident, I have been taking the meds as prescribed and haven't had anymore since. I am thankful for that. It kills me more that my family has to go through all of this and constantly worry about me. I have to follow up with my neurologist again. They said it could never happen again. They said that it could resolve on it's own and in time I might not have to take the medicine anymore. I can't drive, I have everyone constantly worrying about me being at home alone with my son while my husband is at work.
Monday, October 1, 2012
Neurologist Visit
After receiving my MRI results on Friday, I called and was able to get into my neurologist today. He is one of the 2 out of 4 doctors I see that seem to listen and take me seriously. I went in to discuss the results and he didn't seem too concerned. He actually told me that I have something that causes my central nervous system to amplify my pain signals. He worked with my meds some and started me on a fibromyalgia medicine to see if it would help. Although I have a feeling that this is not the whole problem, at least it is something. Some sort of explanation of why I am in worse pain now that I was pre-surgery. I know that Chiari creates it's own problems and recovery from the operation can be a long road. I just can't get past this gut feeling that I have that there is more to it.
Friday, September 28, 2012
Post-Op MRI's 9-26-12
Here are the latest MRI's. On Friday, September 28, I received a letter from my primary care manager stating that my MRI's came back abnormal and that I needed to take them to my neurologist and neurosurgeon. I was a wreck. I immediately broke down. I called my husband who came right away to pick my up to go get the images and results. I was so sure that the surgery was a failure. My mind was all over the place and didn't know what to do. The results states that I had 2 nonspecific fluid collections in the subcutaneous soft tissues posterior to the posterior fossa and superior cervical spine. One measures 3.0 x 0.8 cm and the other measures 3.2 x 0.7 cm. These fluid collections are consistent with seromas. The herniation of the cerebellar tonsils to 6mm appear unchanged from prior. A stable focal posterior disc protrusion which effaces the anterior thecal sac but does not contact the spinal cord.
The bright white spots are the fluid collections.
A small central syrinx extends from C6-C7 measuring 1 cm in length.
The syrinx appears to have grown slightly but is luckily not blocking the CSF flow.
The results also state that I have reversal of the normal cervical lordosis. This is the natural curvature of the cervical spine. What gets me about all of this is that it says unchanged from prior. The problem is, other than the syrinx, the previous MRI's were normal. I am so sick of the word normal. I don't feel normal. Being in pain 24 hours a days, 7 days a week, 365 days a year is not normal!
Tuesday, September 18, 2012
Surgery and Post-Op
As soon as I got home from my neurosurgeon's appointment, I went straight to the internet and tried to find anything I could about Chiari Malformation. Let me tell you, there isn't a lot. Anyone who has tried to find info about Chiari and the surgery knows that you pretty much find the description of the condition and the procedure. There wasn't a whole lot about post-op. I was fine with the idea of having surgery. I had gotten to the point in my life where I was willing to try anything to help the pain I was dealing with on a daily basis. I wasn't scared and knew everything would be okay. I honestly thought this was going to do the trick. The problem was, convincing everyone around me as well. I knew everyone would be worried but I honestly felt horrible knowing that everyone was so concerned about me.
August 23, 2012 arrived, and I was ready to go. I got to the hospital and was pretty much taken straight back to be prepped. There were a few hold ups so it took a little longer to get into and OR than I had expected. I believe my surgery started around 5:30 pm. Everything went well according to the hospital staff. I had a craniectomy, laminectomy of the C1, and some ligaments cut and cleaned up over the dura because they were extremely tight. Once I came to in the ICU, I was even getting up and going to the restroom on my own other than help with getting my IV pole. I had a lot of pain throughout the night but was told during one of my medication visits that I would be discharged in the morning. I remember the surgeon coming in and talking to me, even though I don't remember a lot of what he said, and was discharged around 8:30 am. I remember thinking to myself, "I thought I would be spending at least a few days here. I just had brain surgery and they are sending my home." I was still so out of it that I didn't even think to question them. I was just glad to be going home to the comfort of my own home.
The first 3 days home were good other than the pain. I took my meds and thought it will get better soon just as with any other surgery. Then Monday came. All of a sudden, numbness hit. I mean my entire body was numb. I called the surgeon's office and the nurse told me to try ice and rest. I did and it seemed to help a little that day. The next day, nothing helped. I dealt with it for 3 days until I finally broke down and my husband took me to the emergency room. I got treated ok until hours later when they heard back from the neurosurgeon who said it was "NORMAL" and then they started blowing me off. I knew my entire body being numb, not being able to feel hot and cold, burning myself and not feeling it, and everything else I was facing was not normal. It was horrible. I dealt with it as long as I could. I went to my regular doctor's office to see if they could get me in and they said that I immediately needed to go back to the emergency room and scheduled me an appointment for the following morning. In the emergency room, I told them all of the above problems plus the increasing pain. They switched my meds, called the neurosurgeon and yet again, "IT WAS NORMAL". At least this doctor believed the pain I was in and treated me with respect.
It was finally time to see my primary care doctor. She had been the only one who had truly believed me. She talked to me for a while and immediately ordered lab work, x-rays, and a new set of MRI's. I was so happy. Everything got done that day except the MRI's. I am an Army wife, and for those of you who are also, you know how Tricare works. The base we are stationed at doesn't have an MRI machine so I had to wait for an opening and travel about a half an hour to get it done.
The day finally came for my first post-op appointment with the surgeon. September 17. Yes, 25 days after surgery! That was yet another thing that didn't make sense to me. I only found out about when to take all my bandages off when I talked to the nurse about the numbness. They hadn't even told me if I had staples, stitches, or whatever. The best part of it all was, the nurse had the file right in front of her and she said it wasn't listed anywhere!!! I went in hopeful. Big mistake. As soon as the nurse practitioner came into the room, I knew that things weren't going to go good. After explaining all of the issues I had been dealing with, I once again heard, "NORMAL". I was livid. She had the gull to tell me that since I was able to get married and have a child, I must have had a lull in the pain I had experienced for all of these years. I swear that normal people think that just because people are in pain, they don't find a way to live their lives the best that they can. When I asked about my meds, she said she would see about getting a refill. After talking to the surgeon, she came back into the room. She told me, "I will give you one more refill on your pain meds and change your muscle relaxers. Not saying you do this, but taking more than stated or taking them more often than stated won't do anything. You really need to try to get off of these in the next couple weeks." If my husband hadn't been there with me in his military uniform, things would've gotten ugly! That was the point when I decided that as soon as I had my last follow-up to check my incision and stuff, I would be finding a new surgeon.
August 23, 2012 arrived, and I was ready to go. I got to the hospital and was pretty much taken straight back to be prepped. There were a few hold ups so it took a little longer to get into and OR than I had expected. I believe my surgery started around 5:30 pm. Everything went well according to the hospital staff. I had a craniectomy, laminectomy of the C1, and some ligaments cut and cleaned up over the dura because they were extremely tight. Once I came to in the ICU, I was even getting up and going to the restroom on my own other than help with getting my IV pole. I had a lot of pain throughout the night but was told during one of my medication visits that I would be discharged in the morning. I remember the surgeon coming in and talking to me, even though I don't remember a lot of what he said, and was discharged around 8:30 am. I remember thinking to myself, "I thought I would be spending at least a few days here. I just had brain surgery and they are sending my home." I was still so out of it that I didn't even think to question them. I was just glad to be going home to the comfort of my own home.
The first 3 days home were good other than the pain. I took my meds and thought it will get better soon just as with any other surgery. Then Monday came. All of a sudden, numbness hit. I mean my entire body was numb. I called the surgeon's office and the nurse told me to try ice and rest. I did and it seemed to help a little that day. The next day, nothing helped. I dealt with it for 3 days until I finally broke down and my husband took me to the emergency room. I got treated ok until hours later when they heard back from the neurosurgeon who said it was "NORMAL" and then they started blowing me off. I knew my entire body being numb, not being able to feel hot and cold, burning myself and not feeling it, and everything else I was facing was not normal. It was horrible. I dealt with it as long as I could. I went to my regular doctor's office to see if they could get me in and they said that I immediately needed to go back to the emergency room and scheduled me an appointment for the following morning. In the emergency room, I told them all of the above problems plus the increasing pain. They switched my meds, called the neurosurgeon and yet again, "IT WAS NORMAL". At least this doctor believed the pain I was in and treated me with respect.
It was finally time to see my primary care doctor. She had been the only one who had truly believed me. She talked to me for a while and immediately ordered lab work, x-rays, and a new set of MRI's. I was so happy. Everything got done that day except the MRI's. I am an Army wife, and for those of you who are also, you know how Tricare works. The base we are stationed at doesn't have an MRI machine so I had to wait for an opening and travel about a half an hour to get it done.
The day finally came for my first post-op appointment with the surgeon. September 17. Yes, 25 days after surgery! That was yet another thing that didn't make sense to me. I only found out about when to take all my bandages off when I talked to the nurse about the numbness. They hadn't even told me if I had staples, stitches, or whatever. The best part of it all was, the nurse had the file right in front of her and she said it wasn't listed anywhere!!! I went in hopeful. Big mistake. As soon as the nurse practitioner came into the room, I knew that things weren't going to go good. After explaining all of the issues I had been dealing with, I once again heard, "NORMAL". I was livid. She had the gull to tell me that since I was able to get married and have a child, I must have had a lull in the pain I had experienced for all of these years. I swear that normal people think that just because people are in pain, they don't find a way to live their lives the best that they can. When I asked about my meds, she said she would see about getting a refill. After talking to the surgeon, she came back into the room. She told me, "I will give you one more refill on your pain meds and change your muscle relaxers. Not saying you do this, but taking more than stated or taking them more often than stated won't do anything. You really need to try to get off of these in the next couple weeks." If my husband hadn't been there with me in his military uniform, things would've gotten ugly! That was the point when I decided that as soon as I had my last follow-up to check my incision and stuff, I would be finding a new surgeon.
Immediately after waking up in ICU.
Sunday, September 2, 2012
10 day post-op
The wait seems like it has been so long. It has now been 10 days since my surgery and the bandages are finally gone. I have wait so long to see what it looks like. Here are the results. I got lucky and the incision ended just at the edge of my tattoo. I really wasn't happy about how much hair I lost, but what can I do!?!
Tuesday, August 28, 2012
5 days Post-Op
I got to take the big, outer bandage off today. I still don't know what to expect underneath, but it is a start.
Thursday, August 16, 2012
Pre-Op MRI's showing Chiari Malformation and Syringomyelia.
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Wednesday, August 15, 2012
This is my life
Welcome to my story! This road that I have been on has been a long one. I lived a normal life other than a few sprains from gymnastics and just being a kid. Then, when I was 11 years old, I broke my neck in gymnastics. I broke the hook of the C7 vertebrae in my neck completely off. I had to wear a neck brace for a few months and take it easy. As time went on, I starting feeling better. I was finally able to lose the brace and pretty much return to my normal life. I thought it was over. Then, when I was 15, the pain and muscle spasms started. The doctors blamed it on an old injury I had. I didn't think any differently so I went along with it. I then started experiencing migraines, which was also blamed on all the neck pain I had. I was given a couple of prescriptions and I went on with my life. I would have days that were so bad that I didn't want to do anything. That was not an option. As the years went on and the pain got worse, I went to doctor after doctor looking for answers. I kept getting blown or heard, "There is nothing wrong with you.". If they did listen, the answer was Ibuprophen and muscle relaxers. Nothing helped. It had gotten to the point where I felt like giving up. I kept going to doctor after doctor, taking whatever meds they thought would help, going to physical therapy, using heat and ice, and just anything that could possibly help. None of it worked. I dealt with this for 13 years!
About a year ago, I finally found a doctor that after all those years, ordered an MRI. It came back normal other than the old injury. I felt defeated. I felt as though no one would ever believe me and I would be this way forever. A few months later, I moved, which meant a new doctor. That was a total waste of time. She was more into her self than the care of the patients. I explained to her that every other doctor I had seen had always said there was nothing wrong with me. She had the gull to say that I must not have broken my neck then. I was furious! Needless to say, that was the first and only time I saw here. After dealing with finding a new doctor and my insurance company, I found someone who would listen. In the first visit with her, she listened, ordered a whole battery of tests including MRIs, and prescribed some medications to try to get my pain under control. She also immediately submitted referrals to pain management, a neurologist, and a neurosurgeon just in case. A few weeks later I had the MRIs done and got the results back. It showed that I had a syrinx the length of my spinal cord from the C3-C7 levels. Finally an answer. I was diagnosed with Syringomyelia on July 2, 2012.
It was finally time to see the neurologist for the first time. After reading over the reports, he was convinced that the syrinx was the problem and got me in quickly with the neurosurgeon. He made it seem like the syrinx was huge and I would probably be having surgery in the near future. He wanted to do a brain MRI to rule out the Chiari Malformation. Since the radiologists didn't find it, he was convinced that I didn't have that. I got the new MRI and it came back...NORMAL! The day came when I would see the surgeon. He came highly recommended and seemed like a great doctor. On August 1, 2012, within seconds of looking at the MRI images, I was diagnosed. There it was, plain as day but yet the radiologists report said there was nothing wrong. We immediately started talking about the surgery. We both agreed that it would be the best route to try to improve my symptoms. I scheduled my surgery and went home and thought about it all. Here all this time I thought I only had Syringomyelia but now I also have Chiari Malformation type 1. The reality was setting in that I would be having brain surgery.
About a year ago, I finally found a doctor that after all those years, ordered an MRI. It came back normal other than the old injury. I felt defeated. I felt as though no one would ever believe me and I would be this way forever. A few months later, I moved, which meant a new doctor. That was a total waste of time. She was more into her self than the care of the patients. I explained to her that every other doctor I had seen had always said there was nothing wrong with me. She had the gull to say that I must not have broken my neck then. I was furious! Needless to say, that was the first and only time I saw here. After dealing with finding a new doctor and my insurance company, I found someone who would listen. In the first visit with her, she listened, ordered a whole battery of tests including MRIs, and prescribed some medications to try to get my pain under control. She also immediately submitted referrals to pain management, a neurologist, and a neurosurgeon just in case. A few weeks later I had the MRIs done and got the results back. It showed that I had a syrinx the length of my spinal cord from the C3-C7 levels. Finally an answer. I was diagnosed with Syringomyelia on July 2, 2012.
It was finally time to see the neurologist for the first time. After reading over the reports, he was convinced that the syrinx was the problem and got me in quickly with the neurosurgeon. He made it seem like the syrinx was huge and I would probably be having surgery in the near future. He wanted to do a brain MRI to rule out the Chiari Malformation. Since the radiologists didn't find it, he was convinced that I didn't have that. I got the new MRI and it came back...NORMAL! The day came when I would see the surgeon. He came highly recommended and seemed like a great doctor. On August 1, 2012, within seconds of looking at the MRI images, I was diagnosed. There it was, plain as day but yet the radiologists report said there was nothing wrong. We immediately started talking about the surgery. We both agreed that it would be the best route to try to improve my symptoms. I scheduled my surgery and went home and thought about it all. Here all this time I thought I only had Syringomyelia but now I also have Chiari Malformation type 1. The reality was setting in that I would be having brain surgery.
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