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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.