What A Ride It Has Been!

On January 31, 2013, the neurologist did a spinal tap and blood work to test for MS. While he was there, he decided to take some extra and test my pressure and everything. After almost 2 weeks, I found out that I didn't have MS, but my spinal fluid pressure was high. The neurologist called my neurosurgeon, and I got an appointment with him quick. After talking, he told me that I had Obstructive Hydrocephalus and that he and the neurologist thought the best route to take would be to do a temporary drain to see if it helped improve my symptoms. If it did, they were going to insert a shunt from the end of my spinal cord around to my abdomen.

On February 21, 2013, I went in for the procedure. It was quick and pretty much pain free. They had me lay flat and did a lumbar puncture and drained a small amount of fluid. Afterwards, I had to lay flat for so long and then they raised my bed, so many degrees, every so often. I was then able to go home with only the restriction of resting and not doing any vigorous activity for two days. The day after the drain, I started feeling relief. It continued to get better with pretty much complete relief of the pressure issues, headache, dizziness, double vision, etc. I was so happy!!! The symptoms remained gone for 9 days. Something had occurred and my body took over. My head and everything was under so much pressure. Almost immediately, all of the symptoms had returned. I was crushed, but at the same time felt hopeful that the shunt would be put in and I would at least be relieved of some of my many issues. I got a call from the surgeon's nurse telling me that I needed a follow-up and to get an eye exam with test to check the pressure in a certain part of my eye. I got the eye exam done and it came back normal.

On February 13, 2013, I had my appointment with the neurosurgeon. Let me tell you, that was waste of time. I went in very hopeful and walked out livid. It started ok. I told him how everything had gotten better until the issue I had and then everything came back worse. He explained to me that when he did the drain, my pressure was within normal range and that he only drained a small amount. I don't care what he said or thought, the test worked! I wasn't faking or imagining that it worked, IT WORKED! He told me that it was ultimately my decision on whether to do the shunt or not. I told him that I wanted it because I wanted to get rid or ease any symptoms I could. I wanted to be able to do more and live, even slightly, in less pain. He explained that I would have to go in every couple years to maintain the shunt and would have scars on my stomach. I explained to him that it didn't matter to me and that I already had scars and stretch marks from pregnancy. That is the least of my worries. He told us, "Let me go call your neurologist.". He wanted to consult with him. That was totally understandable to me. He made it seem like he would be right back. WRONG! Not even 2 minutes later, the receptionist came in and said, "You can go. We will call if we need to see you again." That was the wrong thing to say at that moment. My husband grabbed his stuff and told our son to come on. I walked out of the office saying how horrible the place was and that the surgeon was an ass.

The situation really hit an emotional spot in me. I went back in and told a woman behind the desk what happened. She told me to hold on and came back and said the surgeon would be out in a minute. He didn't come out. The receptionist that told us we could leave came out to talk to me. I told her how I thought that what happened wasn't right. I explained the previous problems I had with the nurse practitioner and how she had called me a junkie, among other things. I told her that I knew it wasn't her fault, but I had been treated badly too many times. Luckily, I have an appointment scheduled with my neurologist in about 10 days. I will be talking to him about all of this. If I don't hear anything before then, I will also be consulting him about a new neurosurgeon. I have been jerked around too long. I have had problems with the neurosurgeon's office since August 27th, 4 days after my decompression surgery and it is still continuing to this day.

Life is getting harder by the day. Doing even the smallest things are getting harder by the day. Functioning, being able to take care of my family, enjoying time with my family other than sitting around, everything is getting worse. The issues keep piling up. I'm having more and more pass outs and seizures. My legs don't want to function most of the time. My arms and especially my hands have become a huge issue since all of the symptoms returned. I am swelling, can't write or even color with my son for more than 5 minutes without being in excruciating pain. I am heading back to the walker and wheelchair, that I have tried so hard to stay away from. My pain management doctor is just as big of a pain as the surgeon is and the pain is out of control. I am up and down every night. The list just goes on and on. I have went from a person in their later 20's to someone who feels like they are at least in their 80's. I have had enough. I will go to however many doctors I have to until I get someone to finally do something. I cannot and will not continue this way.

My busy, hectic life keeping me from posting.

I haven't been able to be on for a long time. Life has been super hectic. Between our move and my health, I haven't had much time. There is a lot going on right now, that when I get some down time, I will fill everyone in. Needless to say, things feel as though they are getting worse. They have found a new issue and I'm sure that there might be more. They changed my pain meds and of course they don't last long, so the pain doctor thought it would be best to just add another dose. UGH!

As soon as things calm down, hopefully soon, I will post about my what all has been going on, as well as the new condition and possible treatment. Thank you to everyone that has read this. When I started it, I never imagined so many people would see it. Like I said before, it was just for me to vent and if I can help just one person, my job is done. I hope that everyone is doing as well as possible and has a great weekend.

So Busy!

I have had so much going on the last few weeks and haven't been able to post. I have been having a lot of issues and don't know what is going on. We bought a new house and just got moved this weekend. I saw my neurologist on Thursday. He did a spinal tap and blood work to check for MS. I don't know if that is what else I have going on but they keep telling me that certain things aren't due to the Chiari or any other issues. I have a gut feeling though that something isn't right. He told me that right now his goal is to improve my quality of life, seeing as I don't have much of one right now.

I finally got my appointments scheduled for the Mayo Clinic. They aren't until April but I can wait. I have to see a pain doctor, a neurologist, and a pain psychologist down there. It's a start. I know that all of the issues I have been facing, I have been experiencing depression again. Other than that, I just go to pain management this week. I hope they understand and listen when I tell them that what they are doing isn't working. I have 75 pages of reports to go over from the 2 hospital visits to see what some things are. Fun Fun! I guess now it's just a waiting game. Luckily, my husband has the next couple weeks off of work. We can try to get this house together and finish cleaning up the rest of our old house. Then, family time and enjoying our first home. :)

Another Hospital Stay

I went to the ER again last Wednesday. My pain was excruciating and definitely uncontrollable. I figured they would run some tests, give me some medicine and send me home. After just being admitted less than 3 weeks earlier for the same thing, I did not expect to be admitted again. They didn't see any surgical need for me to be there the first time and the same thing happened this time. I know it was for the good of me to do some imaging and observe me to see if I was declining. They could've done that with a regularly scheduled doctor's appointment.

I was admitted late on 1/9. I had not received any medicine until I got to a holding unit and didn't have any of mine with me. It was horrible. After a couple hours, I was finally put into a regular room. I stayed there for a day and other than nurses the only person I saw was a neurologist. He told me that there was nothing for him to handle and if anything needed to be done, it would be for the neurosurgeon. I was thinking they might actually do SOMETHING to help but no. They moved me to a different room on the 10th. I spent a whole day waiting for the neurosurgeon to come so I could be discharged. Nothing. Finally on the morning of the 11th, he finally came and saw me. He said that he didn't see anything that needed surgical intervention but that didn't mean it couldn't change a couple weeks or months from now. He said he would take another look at my images next week and give me a call. I was finally free and able to go home.

We had an issue getting the prescriptions filled that is a whole other story, that isn't worth talking about, so we just didn't get them filled since I had my regular meds at home. My pain management doctor said that I could come on Monday morning and they would give me my monthly prescriptions. I will just wait! I am so sore from all the shots and IV's, and stiff from being in the bed for so long. The only different outcome from the first hospital stay is that I will now be having a physical/occupational therapist coming to my house 2-3 times a week. I really don't want to do that so much but if it has the potential to help me and help regain some strength, I will do it. I just want to do whatever I have to to get better for myself and family. I will do whatever I can to avoid having to use a walker and wheelchair for the rest of my life. Just like the doctor said, I AM TOO YOUNG.

The problems just keep mounting. I have Chiari, Syringomyelia, Degenerative Disc Disease, at least 8 bulging or protruding discs, non-epileptic seizures, Migraines, vision problems, weakness, numbness, pressure in my head/ears/spine, Chronic Pain, balance issues, etc. The list just goes on and on. All but 1 has been found in the past year. All I'm looking for is a break already. To all of you who have any medical issues, do not give up until you get answers. Keep pushing and going to whatever doctors you have to until you get what you need.

Oh the pain!

The new problems that I have been having this past month seem to be just getting worse. For the past three days, I feel like I am going down hill at a steady pace. I woke up this morning feeling even worse. Migraine, as soon as I stepped out of bed I encountered the extremely intense spine problems, numbness, increasing weakness, double vision, a grinding feeling every time I move my back, etc. This is getting old. I seems like the last month has been the worse month ever.

Going to the doctor or ER isn't an easy decision. Sure I know that I probably should go but I can't just consider myself. We have no babysitter, I am still unable to drive so my husband, who has so much to do at work and is in charge, would have to leave and take me, they usually don't let children under 12 in the back so I would most definitely be facing it alone, and the fear of being admitted again. If I am, the only person we have to care for my son is my husband. Being in the Army, you can't just call of sick. Explaining the situation, sure they can let him take a couple days off but they could also give him a hard time about it. I am trying so hard to work through it and make it to my pain appointment tomorrow but who knows if that will happen. I hate how MY illness and issues affects every person around me.

I don't understand why I was chosen to have all of these issues. Why wasn't one enough? They seem to just keep piling up on top of me and it weighs me down so much that it feels like I'm being crushed. It's hard to separate whether it's the Chiari, Syringomyelia, Degenerative Disc Disease, my discs problems, or something completely new. I try to be the strong person that hides her pain, puts on a fake smile, and fools everyone into thinking I'm okay. I don't want people to have to worry about me constantly.

All I want is for the worst to be over. For someone to really realize that something is not right. For someone to take me really seriously. I am 28 years old and truly feeling like I'm 82 instead. I hate that my son isn't old enough to really understand what is going on. He knows that mommy is "sick" but doesn't get the extent of it. I hate it affecting him and hearing him tell me that he doesn't want me to go back to the doctor.

Bent in half :(

So, I was experiencing my normal pain yesterday, like always. It was one of those days where I hurt a little more than others but other than being exhausted, nothing out of the ordinary. As we were getting ready to go to bed, all I was doing was walking and a sudden pain, like no other, hit me. I was doubled in half and couldn't stand up straight. My spine had a constant, sharp, stabbing, tingling pain. My hips clear to my toes hurt so bad and were more numb than most days. My head felt like I had a sharp pain that went straight down the center from my chin to the base of my skull. I also had the pain and feeling I get when I have a pinched nerve that affects my left arm.

I managed, hunched over on my walker, to get back to bed. I had to sit there standing with my upper body on the bed for a while before I was even able to consider trying to get into it. I finally got the nerve and doing so made it even worse. Trying to move an inch made it feel worse. I dealt with this all night long. Of course, like any other time I am feeling completely miserable, the cat and my son were not cooperating. The cat was being crazy and waking up my son. I finally just told him that he could come sleep with us so that I wouldn't have to keep getting up. I got all the pillows I could find and got myself propped up into a semi-comfortable position and was able to go to sleep.

When I woke up this morning, I was able to stand more upright being just a little hunched over. The pain isn't quite as intense but still very much there. My arm and legs are still numb but I am used to that. The pain under my shoulder blade is a bit worse but not much I can do about it. So I guess the next couple days will entail not doing much of anything and hoping that pain management will be able to help. I don't know which one of my medical issues is causing this one. I hate facing all of this all the time. I am pretty sure that is has to do with my disc issues but who knows. Considering that I have issues in parts of my entire spine, that's the only thing I can think of. I am just hoping that it doesn't get any worse so another ER trip isn't in my near future, although an ER trip could be a good thing since I got a call from the new neurosurgeon that didn't sound the best. His assistant said that he wanted new MRIs of my cervical and thoracic spine to see if anything has changed to be causing all these new problems. He would look at the ones he has and compare the new ones, when I get them, and "decide whether he even wants to see me". I don't get it. They made it sound so promising in the hospital and now it brings back the feeling that I had before like they don't believe me.

I am in so much pain. Since my Chiari Decompression surgery, I have only gotten worse. Nothing has gotten better. I have new issues all the time. Something is wrong, really wrong I feel. I need someone that is going to take it very seriously. I have insurance, they will get paid, so I don't see what it would hurt to have me come in and talk to me so that I can explain all of my issues, discuss the MRIs and figure out something from there.

My Life Lately

The past week and a half has been a lot of ups and downs. We have a lot going on. I'm hoping that 2013 will be our year. Since I left the hospital, not a whole lot has changed. The pain is at least the same, if not worse. The only difference is, my legs are working better most of the time. Some days are better than others, and it seems like every day brings a new challenge. I am having some new issues, not huge ones, but I have been keeping track of everything for all of the doctors. I am unable to really use the wheelchair in the house we are currently in so I pretty much having to rely on the walker. Although I know I need it and that I am supposed to be using it all the time, I don't always do it. I am stubborn and it is even difficult in some areas of the house. The wheelchair seems to help more and the walker seems to add to the back pain a little. I always take something with me when we go out, it just depends on where we are going and what we will be doing what I will take. I don't know what is going to be in my future with my health but I am willing to do whatever they think is best. The only appointment I have scheduled as of now is just my regular monthly pain management appointment. I have to discuss with them that the steroid shots didn't help and that the medicine I am on is barely touching the pain. I really like the PA that my appointment is with and she said there are a lot of treatments they can try so it makes me hopeful that they will work on my pain.

I have gotten some good news but am still waiting on appointments and news in other areas. The good news is that yesterday morning I got a call from my neurologist's assistant. She told me that they had sent my file down and I would be getting a call from the Mayo Clinic within the next few days about whether they were going to take on my case. It's a start and I will take it. I also got a call yesterday afternoon about scheduling my appointment with the new neurosurgeon but was unable to do so at the time for some reason so they are supposed to figure it out and call me back today. I hope they get it straightened out because I really liked this surgeon. The bad news, which isn't really bad, is that I am still waiting for my PCM to request more authorizations for my specialists.

More has changed as well. Our lease in our current home is up next month and we found a house to buy. It is open enough for me to be able to move around in and doesn't have any stairs to get in or out. Our current home has steps to get in from every entrance. It is one floor and bigger so hopefully I will be able to use my wheelchair and walker the way I am supposed to be. We have already signed a contract on the house itself and last night we took the paperwork to the finance officer that he needed and signed some paperwork with him as well. He said that his underwriter, of course, cannot give him a 100% yes until they get everything done, but she is pretty sure that it is going to work out. I hope it does. My family really needs some good instead of bad all the time. Hopefully by next week we will know if the loan is approved and we can move forward and get closed by our projected 1-31-13 date.

I am just ready for a change. I am so sick of bad constantly popping up every where we look. I need my health to be taken seriously and get it handled before too much permanent damage is done. I do not want the wheelchair and walker to be a permanent thing.