Chiari Connection International

Personal Stories

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Candice Dixon Contact Me

Pretty much all my life I suffered with the classic pressure headaches, although I didn't realize they were unusual. Anytime I bent over, laughed, coughed, or otherwise exerted myself, I would get that feeling like my heart was beating in my head. It was excruciating, but only for a few moments, and then it would subside. The funny thing is, I thought that everyone felt like that! It never occurred to me to mention it to anyone.

When I was 19 years old, I started having drop attacks, although I didn't realize that's what they were. I was working at a retail store, and one minute I was standing at the customer service desk, and the next minute I was on the floor. I don't remember passing out or being unconscious, just looking up and not realizing what had happened or how I got there. It was pretty scary. I was also having vertigo-like episodes around the same time period, but I didn't put these two things together as being related. I went to a neurologist and he didn't see them as related, either. He did some cursory tests, which I passed, and to this day I have no idea how. He didn't order any scans. I never mentioned the headaches, because I still didn't think they were unusual. I don't know if that would have made a difference in his treatment of me. So I went home feeling very depressed and somewhat suicidal, since if there was nothing wrong with me how could I ever get better? I had several of these drop attacks over a three month (or so) period, and never had another one again.

About five years after all of this, my headaches had progressed to the point that even a little bit of laughter would be absolutely agonizing, and I was starting to realize that maybe this wasn't so normal after all. I mentioned this to my primary care physician, who said it was nothing to worry about and laughed it off. I left feeling like a big crybaby and that I just needed to toughen up. I suffered for many more years as my symptoms progressed, convinced that everyone felt just like I did but for some reason I just couldn't handle it.

Until one day (fast forward 7 years) I woke up and couldn't walk down the hall. I was so dizzy I felt like the room was spinning out of control, a hundred miles an hour. This was vertigo on speed. I managed to make it to the living room sofa, although I don't know how. I had my son bring me a bucket, because by this point the nausea hit full force. I thought maybe I had some sort of virus, but no one else in the house was sick and I didn't have a fever or any other flu-like symptoms. I stayed on the sofa for three days, sipping ginger ale. My father, who suffers from frequent inner ear issues and vertigo, suggested I try Meclizine for the dizziness, which I did, and it helped. The dizziness finally subsided enough to the point that I was able to get around the house, and I made an appointment with my doctor. (I was no longer seeing the same doctor I had seen before.) She ran a battery of tests - thyroid, blood sugar (originally she suspected I was hypo or hyper glycemic), I can't remember all the tests she ran. She then said she suspected that I had vasel-vagel response (sp?), which is when this nerve that runs from your stomach to your brain isn't working correctly. I don't remember all the details of this diagnosis, I just remember telling her that it sounded right maybe, I was always nauseous on some level, always had been and never really realized it. I don't remember ever feeling hungry, I would just feel nauseous and then know that it was time to eat. But as my symptoms progressed and I felt nauseous more often, I was eating more often, and I've gained weight because of it. She wanted to send me to a cardiologist, I still don't remember why, but before doing that she asked me if I'd ever had an MRI done of my brain. This alarmed me - I said no, why? She said, oh, the cardiologist is going to want it, so let's go ahead and get it out of the way. Bingo - ACM, 25 mm herniation.

I got the news over the phone while I was shopping at Target. She (my doctor) tells me, no big deal, it's not like you'll have to have brain surgery or anything! Ok, so I'm freaking a little bit, especially when she gives me a referral to a neurosurgeon. (why do I need a neurosurgeon if I'm not having brain surgery???) But I see the doctor and for ONCE I am validated!!! He knows my symptoms before I say them! It's like he's inside my head!!! I was beside myself. He actually knew things that were wrong with me that I hadn't even realized were "wrong" yet. For example- he told me my fingers were numb. I said, my fingers aren't numb! I looked at him like he had three heads. He gets the little roley pointy thing out and starts rolling it up and down my fingers, and I'm shocked because I can't feel any of it. At any rate, my confidence in this doctor is through the roof. He tells me what I need, he tells me he can do it, and I say, knock your socks off. He's going to do a C1-C2 laminectomy, using Duragen, blah blah blah. I have no idea what he's talking about. I didn't care. He said he could fix me. He could have told me he was going to go to Home Depot and get some #5 screws and some Duct tape and I would've said, OK, sounds good. I knew nothing about ACM, decompression, Duragen, laminectomy, any of it, nor did I want to. I just wanted to have my surgery and go home, get back to my life and my kids and be done with it. What a joke.

So I have my decompression, November 2004. The recovery was hellacious. The hospital was awful. I couldn't wait to get home. BUT... the headaches were gone!!! Praise the Lord!!! I didn't know how to act! Six months later I really didn't know how to act when the headaches started coming back. Even worse, now I had some NEW symptoms. Not the least of which, I was starting to have visual disturbances. My depth perception had always been a little off, but now it was to the point that I was afraid to drive. The nsg said to give it more time... the more time passed, the worse I got. At the one year mark I went into his office with a new MRI scan to be told - the scan looks good. I guess that was supposed to be the end of the discussion. So I tell him, that's great, but I feel worse now than I did before you cut me open! He tells me my problems are because of my carpal tunnel (!!!) but he refers me to a specialist at Johns Hopkins in Baltimore, where I live. So off I go to neurosurgeon #2.

When I see #2, he tells me that my decompression was fine, but not big enough considering the size of my herniation, which is rather significant. His plan is to cut a larger hole in my skull to allow more room, and then use a bovine pericardium patch and titanium plate for support. Makes sense to me. That's what it feels like in my head, like I need more room. Besides, he's a specialist at Hopkins for crying out loud, surely he knows what he's doing. Right?

So I have decompression #2, July 2006. Hospital was awesome, recovery time much better. Less than a month after my surgery, I feel this pocket of fluid develop in the back of my head. Feels puffy. I call the doctor, I want him to see it. He sees it, says it's just a part of the normal recovery process, nothing to worry about. I worry about it. Something just doesn't seem right about it. I can't stop thinking about it. It doesn't go away. My husband and I name it The Lump. Weeks and weeks go by, and The Lump is still there. Sometimes it's bigger, sometimes smaller, but always there. One morning in October I wake up in such pain I can't get out of bed - I call my husband at work and tell him The Lump is angry. So he comes home and gets me, somehow, to Hopkins where they scan my head and find out that I have a pseudomeningocele. Nsg #2 tells him that he can't see on the scan where this fluid is coming from, he's going to have to go back in. Awesome!

November 2006 surgery #3. Come to find out, I had developed a leak. The bovine patch had never healed and sealed itself, so CSF fluid had been building up in there this whole time. That was the puffy lump I had been feeling. So he went in, had to reattach the bovine patch to my neck muscles, glue it, stitch it, etc. He said he had a really hard time getting it to "stay". Well, it didn't "stay" because three weeks later we're right back where we started again. Only this time, he doesn't want to go back in. Now he wants to give me a lumbar shunt. He tells me, if we can keep the area dry, it will heal. Scar tissue will build up, no CSF will be able to build up back there, and it will have no choice but to heal. I don't know why, but this doesn't sound right to me. No surgery for me this time.

It's around about this time that I realize I had better start studying to be a neurosurgeon, because these guys don't know as much as they say they know. Which really sucks, because I'm also realizing that I should've started studying to be a neurosurgeon before I let the first one cut me open the first time, and maybe I wouldn't be in the pickle I'm in. But I am where I am, there's no point crying about it now, so I make the crucial decision to NOT wallow in self-pity (which was not as hard as I thought it would be) and just get myself where I need to be, which in my opinion is NY - The Chiari Institute.

My visit to TCI was in February of 2007. I was told that I did indeed have a pseudomeningocele, the patch hadn't completely healed and probably wouldn't. The duragen that the first nsg had used had been taken off the market due to tissue rejection issues. The bovine pericardium that the second nsg had used was now no longer recommended because of the high incidence of leakage. Those two things together is what was causing the problems I was having. That, and a possible diagnosis of Ehlers-Danlos syndrome. Their recommendation was to have all of my old stuff removed, and replaced with my old tissue. I remember saying to nsg #2 that I thought my body was rejecting this stuff, and he had just laughed it off. I wish I had had the courage to believe in myself at the time, but what did I know? He was the one with the degree. So, I asked the TCI doctor, what about nsg #2's lumbar shunt recommendation? He told me that that would be a huge mistake, they don't like to do lumbar shunts in situations like mine. There was nowhere for the fluid to move, so it would be pointless. Worse than that, it would act like a vacuum, actually moving the brainstem farther down the spinal canal. Not exactly what we're looking for. So at this point I decided I was done with nsg #2. TCI was the place for me. Little did I know, my insurance company had other ideas. At the time of this writing, I'm still without an actual doctor, as my insurance company won't allow me to go back. Appeal process will be underway soon, I'm sure.

The neurologist at TCI also gives me a diagnosis of nystagmus and tethered cord. I'm not at all surprised at this, since I've been reading a bunch of posts about it on the CCI site and they all fit me to a T. But I'm not thrilled about it either. Just means another surgery for me, and I don't trust doctors anymore. At least not anyone but TCI, and the insurance company won't let me go there! I'd rather end up a lump in a wheelchair before I let anyone else hack at me. I realize I'm being a bit extreme, but my situation is a bit extreme. As of this writing, I am sitting here with this pocket of fluid literally floating in my head. It hasn't changed size, which was confirmed by a recent MRI report, but since I don't have a doctor to actually look at the films, I have no idea where the fluid is. My vision has gotten worse, so I'm assuming it's settled on an optic nerve.

In spite of all of this, my spirits are good and my hopes are high. My faith is firmly planted on the Rock of Christ, and He is my strength. I know that most of the things that I am going through are out of my control, so it helps me to know that He IS in control, and that is how I get through most days. I refuse to let this condition define or control me, no matter what kind of grip it has on me. Some days are better than others, to be sure, and that's when this group jumps in to help me out. I've found such a source of strength and companionship among the people here, it's been unbelievable! It always helps me to know, that no matter how hard my day has been, there is someone out there who knows where I am and can walk that road with me.

My Chiari Story - Christine from WI
Christine Schultz Contact Me

About 4 years ago I started having terrible headaches whenever I would lie down at night. I would wake up at 3:00 or 4:00 in the morning from the pain and toss and turn trying to find a comfortable way to sleep. The pain felt like pressure in my face behind my eyes. I was treated for several possible sinus infections, which I now know I probably didn't have.

I had been seeing a neurologist for several years because I have a history of migraine headaches. The first time I complained of the nighttime headaches he did not think they were important. When I saw him 6 months later and was still complaining, he ordered an MRI. It showed that I had herniated tonsils (8.7mm) and told me about Arnold-Chiari Malformation. He said, "Don't worry, we won't do surgery right away. We can try different medications to deal with the pain." So, over the next two years he tried 4 different drugs that caused me to gain weight, fall asleep in the middle of the day and generally feel lousy, but did nothing to help the pain. In fact, it was getting worse and I was getting little or no sleep at night.

I saw a different neurologist for a second opinion. He wanted to try one more medication before discussing surgery. He prescribed Topamax starting with 25 mg a day and slowly working it up to 200 mg a day. It did nothing for the Chiari headaches, but dramatically reduced my migraines. However, I had terrible cognitive side effects. For example, I could not figure out how to read a clock with hands on it, how to read the gas gage in my car (and ran out of gas twice) or how to dial a long-distance telephone number. However, my doctor weaned my dosage back down to 25 mg and I no longer have the side effects and still have some relief from the migraines.

Since none of the drugs helped my Chiari headaches, my neurologist finally referred me to a neurosurgeon. During our consultation, the NS seemed very confident that he could help me. He said if the Chiari was causing my pain, the surgery would certainly take it away. I asked how many surgeries he had done and he replied 50 or 60. I asked if he ever had complications with the surgery and he said he had a spinal fluid leak once, but fixed it during the surgery. Having no idea what that meant, or not realizing that 50 or 60 surgeries over a 30 year career works out to only 2 or 3 surgeries a year, I went ahead and scheduled my surgery for May 25, 2006.

I remember waking up from my surgery and being in intense pain. I had a button to press for a dose of morphine so I would wake up, press the button and pass back out again. When I was awake, I was extremely nauseous and vomited constantly. I was also having hallucinations, nothing real scary, just seeing flies all over the walls, and graffiti on my husband's clothing and piles of red wool blankets on shelves that were not there. The nurses said they were probably caused from all the morphine I had in me.

Several days after my surgery a nurse noticed I was leaking spinal fluid from my incision so I was given a lumbar drain for 3 days. I had to lie on my side and not sit or stand up during that time. My incision was still leaking fluid so I had a second surgery on June 10th to try and fix a hole in my dura patch. (It is a bovine patch).

At some point I contracted spinal meningitis and was given a picc line and vancomyicin antibiotics for 10 days. At the end of 10 days no one tested me to make sure the meningitis was gone, they just assumed I was ok and sent me home. I returned to the emergency room 3 days later in the worst pain of my life. I was given an IV with a pump so I could just press a button when I needed another shot of pain killer (This time it was dilauded). I remember laying in the fetal position and after hitting my button 5 or 6 times I finally started feeling some relief. The pain was still there, but it was almost like it was a separate thing from me. It's hard to explain, but I finally felt like I had some control over the pain and I wasn't so terrified. Suddenly I realized a nurse was shaking me and telling me to wake up because I was only breathing 4 times a minute. They set my dilauded pump dosage too high and I had overdosed. The nurse said she had to do something to reverse the effects of the diluaded and to be prepared for the pain to come back. I cried and begged her not to do this and in the end she didn't but stayed with me until I was breathing normally again.

Of course they soon discovered my meningitis was not gone. I was given another picc line and 6 more weeks of vancomyicin plus rifampin. I was continuously nauseous and could not keep any food down for almost 10 weeks and lost about 40 lbs. I was in the hospital from May 25th through the end of August.

The second surgery to fix my dura leak did not work as I still had spinal fluid building up in a cyst under my skin at the back of my head. My NS tried aspirating the fluid out 5 times with a large needle and syringe, but then decided to stop since it just kept coming back - plus I think he was afraid of re-infecting me.

When I first learned about the cyst, my NS had mentioned putting in a shunt to drain the built up fluid. When I asked him about it later, he just kept saying it was no longer an option. He said there was nothing more he could do for me and the leak should heal on its own.

I sought a second opinion at the University of Madison-Wisconsin hospital, but they seemed reluctant to get involved in my case. The surgeon actually said, "I do not want to 'muck around' in your head right now." I stayed at their hospital for 4 days of observation and was sent home. They also told me my dura leak should just heal on its own.

It has been almost one year since my original surgery. I still have spinal fluid building up at the back of my head in a large cyst. If I lie down to sleep, the back of my head swells up so I try to sleep sitting up in a chair. I have more Chiari symptoms now than I did before the surgery including pain at the back of my head when I cough, sneeze, bend over or stand up too fast. My pain increases with any kind of activity. My arms and legs fall asleep all the time and get terrible pins and needle pains. I have not been able to work since my original surgery.

I did not research Chiari Malformation on the internet until after my surgeries. I certainly wish I would have done so before my surgery! I have an appointment at The Chiari Institute at the end of May. I do not know if they will be able to help me but am very anxious to hear what they have to say.