So much for hoping.

Well, things didn't go exactly as I had hoped for. I went to the neurologist on Tuesday. I feel so relaxed and calm there since I know that I will be treated right and not like I'm faking anything or have everything downplayed. We got back to the exam room. I was feeling tired, so I rested my head on my hand and closed my eyes. The next thing I remembered was waking up with people in the room and hooked up to an EEG. Not exactly how I expected the day to go.

When I came to completely, he talked to me about what he wanted to happen. He said he wanted me on a "drug vacation" to keep me in as little pain as possible for a little while in hopes that it would reset my body. He believes that all my pain, plus my nervous system being so out of whack from everything, is what is causing me to pass out and have the seizures. He did say that the shunt wouldn't hurt but it wasn't necessary right now. He went out and attempted to call my doctors. The neurosurgeons and my family doctor were on vacation. He managed to get ahold of my pain doctor that I was already scheduled to see the next morning. We could hear him talking to him on the phone, explaining what was going on with me, and what he wanted to do to get my body under control. Everything seemed like it was going to go smoothly.

Wednesday was a busy day for us. I had my pain management appointment. We left early so we could get in early since we had to get back to my husband's work so he could reenlist. We got in really quick and the new PA seemed awesome. She started talking like she was going to follow through with the neurologist's plan. She left the room to go talk to the doctor. The next thing I know, she comes back in saying that the doctor would not follow through with the plan and that they wanted me to get a psychological evaluation. WTH!!! That is the point where I had to hold back as much as I could from flipping out. I kept my cool and talked to the doctor while he proceeded to talk like he was just treating me for headaches. ARE YOU KIDDING ME??? I told him, I don't just have headaches. I am also not here to just get pills because I'm some kind of junkie. I asked him if he thought that was my case. He told me that he didn't think that and started blaming everything on the neurologist. "All he did was talk and wouldn't give me a change to respond. I don't believe what he wants done is the right thing. I wouldn't be able to go home and lay my head down and feel like I did the right thing." He talked to me and talked to me and talked to me. He finally said he could release me and the neurologist could do what he wanted. I finally had to tell him that that is what I wanted to do and we needed to leave so my husband could get back to work.

The whole time this was going on, I was on hold with the neurologist's assistant. They had told me the day before that if I had any problems to call them. Luckily, we had time to spare because they wanted me to come straight over. We left and went straight there. The offices are only a few minutes away from each other. I went and signed in and explained what was going on. The receptionist called back to see where they wanted me to be. I was squeezed in with the assistant. They printed out my current meds like they always due. This time, it listed the new medicine instead of the old one. I felt so much relief after all the stress we had been through. They want to see me back on Wednesday to see how I am doing. So far the meds don't seem to be making much of a difference, not to mention the fact that the patch is irritating the hell out of my skin.

We finally got the appointments out of the way and head back to the base to reenlist. NOPE! The guy that was supposed to do it's wife had their baby that day. He didn't print out the paperwork so the new woman could do it. She told us, "Let me get your number and we will let you know when we can do it." It was just a bad day to say the least. My wonderful hubby then dropped me off at home, and went to get my prescription filled. At first, I could feel a little bit starting to kick in and then it just made me tired. Ever since, not much of a change. I am still in so much pain. I'm still having issues with my hands/legs, my hands are swelling so badly and are more numb than ever, the pressure is killing me, the headaches are getting worse and more frequent, my body is just on a downward spiral. Hopefully the neurologist will get this under control. I don't know how many more days like this I can handle. Wondering if I'm going to be able to move, wondering if I'm going to pass out or have a seizure, wondering if I am going to be able to even do the smallest things for my family. I want to give up on all of it so bad some times, but I know that I have to keep fighting for not only myself, but for my son and husband.

Hoping for a good week

The weekend wasn't the most eventful that I had, but definitely not one of the best. I had to use my walker when we went out, thinking that Lowe's wouldn't have any power carts. It was pouring the rain so I didn't want to take my wheelchair since we have a truck and can't put it inside. Luckily, when we got there, they had some. That saved my legs and hips a ton of pain. Everything seems to be getting back to how it was in December before I was admitted to the hospital. I am having a ton of pain and severe numbness in them. It's not the easiest for me to be on my feet or walk, but I try my hardest to not let anyone know. When we got that done, I rested while my husband did the work that needed to be done on the house.

On Sunday, I had to go pick out my glasses. I don't really like wearing them, but I need them. I found a couple pair that I actually liked and felt looked good. I just hate knowing that I am 29 and am already starting with bifocals. I ordered the no line lenses so no one will be able to tell. After we got done, just walking around the store for less than an hour, my legs were so bad. I didn't anyone though. I did a couple little things with my husband, (watched him put up curtain rods and handed him the screws). After that, I remember baking some brownies and putting some things away in a box. According to what I was told, I did more than that. I lost at least a half hour. I guess after that, I told my mother-in-law that I wasn't feeling well. I laid down on the couch to relax. I then started having slurred, mumbly speech, and kept saying, "Pain, Pain...". After a little while of that, I finally went out and had some twitching. I must have been gagging, because when I came to, I was on my side and had a towel under my mouth. I still couldn't really talk when I woke up. I really saying that I was stuck and couldn't move. My arms and neck felt locked. My amazing husband worked them around and I started getting back to normal. All but the last part, I don't have any clue of it happening. I never remember what happens when I pass out or have a seizure, but I have never had memory loss before.

Today, I woke up in a lot of pain and have a very bad pressure headache in the back of my head. I hear whooshing noise in my ears at all times, just like I did before they drained the fluid. I finally see my neurologist tomorrow. I'm hoping that he will consult with my surgeon and agree with me, after me explaining all that is going on, that the shunt is the best thing for me right now. Who knows how it will turn out, but I usually have a pretty good experience with him. Him and his assistant always take me seriously and listen to what's going on. I also have to make sure to have him submit the referral to the Mayo Clinic so I can get my hotel and everything booked. Between now and my appointment tomorrow, I have decided to also look up conditions that are associated with Chiari to see if any of them can explain some of the things that are going on with me. I will post an update tomorrow and let everyone know how it goes. Fingers crossed and I hope everyone out there, has a good, pain free, day! :)

Some days, I wish I had my old life back.

Today is one of those days, that I am sick of fighting all of these issues. I am strong, and will continue to fight, but some days are harder than others. There is nothing like the days when you are awaken extra early due to one of your problems. Getting up, just knowing how the day is going to be. After waking up, and starting to move around, you realize that it feels like you went back in time a couple months. I haven't used my walker in a while. It's just been sitting there in the corner collecting dust. Once I got moving around, I just thought to myself, "Oh boy, here we go again.".

I got it out, unfolded it, and away I went. I was trying to be as quiet as possible since everyone was still asleep. Of course, they give you the cheapest one possible, that makes the most noise. My hips and legs hurt and I'm feeling just a little off balance today. I hate that walker! I try to avoid it at all costs. All of this just goes along with everything else that seems to be getting worse. I wonder in my mind if there will ever be a day again where I just feel like ME again. I used the walker for a little while, and now I have moved on to just holding things as I walk by. I don't want to become dependent on all this medical equipment. We go to the store and I either have to take my wheelchair, use one of the power carts they have available, or push the buggy. I just get too worn out. When you have "invisible" issues like me, of course you get the stares like, "There is nothing wrong with you.". I hate people that judge. Do you really think that I would be going through all of this if I didn't have to?

My biggest fear is that I will get to the point where I have to use the walker and wheelchair all the time. From the time I wake up, until the time I go to bed. I get tired of telling everyone my speech about how I will do all the things I can until I can't, and that I know what my body can handle. I'm fighting as hard as I can, but I just don't understand why something can't just give. Let me get the surgery. Let me help any of the symptoms that I can. I don't see why this is so hard to get done. I keep being told, "That it is my decision.". I have made my decision. I have made it very clear what I want. Why can't that stupid surgeon just listen???

 I found out yesterday that my neurologist didn't even submit a referral to my insurance for the Mayo Clinic, even though they went through all that they did to get me accepted and pretty much handle getting my appointments scheduled. Luckily, I still have a little over a month until my appointments and I see the neurologist on Tuesday. Tricare told me to make sure he put as much detail into it as he could, including why he wanted me to go to that specific place. Fingers crossed that it gets approved. Right now, I feel that is the only hope I have left to get into doctors that have any clue about what is going on. They deal with Chiari and all of my other conditions every day. Maybe, just maybe, they will pinpoint something, even if it is multiple things, about why all of this is happening. Not only that, I am very interested in seeing the Pain Psychologist. I have had depression and anxiety issues for years, that has just become amplified by all of the past couple years' events. Just get me to the point where I can enjoy life, have fun with my family, and do the things I need to be able to. Other than the pain level being lower, THAT IS ALL I AM ASKING FOR.

Just another day.

If I don't already have enough issues, today I wake up sick. I don't feel like it's the flu. I vomited 16 times. Now I have been having abdominal pain. I don't know if it is the Chiari, the hydrocephalus, or one of the many other things. I truly am just hoping this is some sort of fluke.

I am so sick and tired of being sick and tired. I am so sick of if it's not one thing it's another. When will it all stop? When will life become semi normal again? I am hopeful that seeing my neurologist next week, who is pretty much the only doctor I have that fights for me, will get the shunt situation solved.

If it wasn't for the support I have from my family and few friends, and we can't forget my fellow Chiarians, I don't know where I would be. I'm fighting to the death. I want my life back. I want to have fun and enjoy life instead of hating it most of the time. I want to enjoy my family. One day, if it's the last thing I do, I will be ME again!

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.