Chiari Story

Part I: The Diagnosis, a love story for my doctors.

I’ve never done a cartwheel. Ever. In fact, the thought of doing one makes me sick. I get nauseous just thinking bout it. Who wants to do that, right? Run, throw your head down, and fling your legs in the air, hoping you will land on your feet again? No thanks.

In fact, I prefer not to fling, throw, or jump any part of me. Not because I’m lazy, (I am, but that’s beside the point) but because I already spin, and fling enough. *Note, this is also the reason I never fell into doing drugs even. No need.

Back to my head: I can remember being seven and going to bed before dinner because my head hurt so bad. I’ve always had the headache, some days are just worse than others.

Coordination has never been my thing. The long running joke in my family was that I could not walk and chew gum at the same time. I come from a family of athletes, on both sides, so this was especially frustrating. I have felt like a wuss among other things my entire life because I can not do the same things the rest of my family can. I did not know that it was not normal to always have some form of a headache, and that not everyone is dizzy all the time. Hell I thought coughing and sneezing gave everyone a “flash headache”.

So cut to my mid 20s and I am constantly in my doctor’s office (Dr. Baird in Plano, TX if you want to keep score at home) begging him to test me for mono. Every time I get the same results, “nope, you’re fine.” sometimes I would get tested for depression, and even get a prescription for something. Let me tell you two things about me 1) I try not to take anything. Aside from a few things now and then for allergies or pain, I just don’t. Ever. 99% of the time I don’t even bother to get my prescriptions filled. I joke, but that’s because to know me is to know I don’t take so much as an Advil, I’m quite terrified of forming an addiction to be honest. & 2) I’m not a depressed person. I’m an optimist. I can’t help it, even when I try not to be, I can’t help believing in my heart that things are better than they seem. I’m sarcastic, and a bit snarky, but even on my darkest hours, I’ve never felt the despair that is truly depression. Another thing this doctor wanted me to consider was botox for my wrinkles – in my 20s.

I had gone to an orthopedic surgeon as well for some shoulder issues. When I mentioned that I was not just tired all the time, but achy, and exhausted every minute, he sent me in for some testing. They checked me for MS, Leukemia, and Lupus. The Lupus test came back positive so I was referred to rheumatologist, who determined that the test was wrong but said I had Fibromyalgia. At this point I was just happy to have an answer, so I accepted it. I was given pills: An antidepressant to take once a day, a muscle relaxer to take twice a day and a pain pill to take three times a day. I told the doc, that sounded fun and all, but I had to work, so we compromised. He wrote the prescriptions and I threw them away. I eventually caved and started taking Trazadone. In the mean time things just didn’t add up. The more I read on fibromyalgia, the less I agreed that that is what I had. You see I read a lot on Google and so I considered myself an expert. I often say I got my doctorate from Google U. This will actually be a good thing later.

In the mean time, my sinuses had been killing me. I’ve always had major allergies, and now that The Captain is in my life, so was the Captain’s fiery furball of death, also known as Wampa the cat. I had quit going to my second (or maybe third I forget) rheumatologist, and weened myself off the trazadone. That was one of the worst experiences ever. By the way, don’t do that without knowing where your nearest methadone clinic is. I’m still shocked The Capt. didn’t pack up my things after that fun experience.

One day I went to my regular doctor and came clean. I told him I was losing my balance, and falling over after completing such obstacles as standing upright or walking down the hall. He gave me a prescription for anti-nausea pills and something for motion sickness. I thanked him and left. I think I forgot to grab those helpful prescriptions before I left.

Is it any wonder now, why I don’t trust doctors? Yeah, they go through a lot of school, but they are not always that bright. They have to earn my trust now, and sadly I can spot the crappy doctors a mile away. I don’t mind a doctor unfamiliar with certain ailments, it’s the unwillingness to learn, or accept that they might not know everything.

Most of my doctors saw this: a female in her 20s or 30s, complaining of pain, but there was nothing in any blood work, so there must not be anything there. She’s healthy, she must be looking for attention or a drama queen, maybe a little depressed… Just give her some pills, tell her she has fibromyalgia and move on. With the exception of one. Just ONE, out of countless.

I have the best allergist one can have. I’d say what his name is, but I don’t want anyone else to know how awesome he is, or I’d never get in. You can tell from this point I don’t really have a lot of faith in doctors, so for me to sing the praises of one should tell you something. I decided that my regular diet of Tylenol sinus and Benedryl sinus needed a little change. OK my liver had staged a coup. The truth was, my sinuses were hurting so badly I was missing work, and I don’t normally do that. I’m more of a “suck it up” type, and was embarrassed to call in sick because of a sinus headache. This just reaffirmed my wuss status.

I went to Dr. Awesome and he prescribed something for me, told me not to blow it off and to actually take it. -He knows who he’s dealing with here. Then he said something else that if he were any other doctor, I would have blown him off. He told me to call back and let him know in three weeks if it was working. Now most doctors would want you to come back regardless. Dr. Awesome only wanted me to call and let him know. Had I not trusted this man and respected him as I do, I would have waited the three weeks and called to say all was peachy-keen and I would be fine. I got the script filled, AND took them – as directed! Yes that is pride you are sensing there. Three weeks later…. nadda. My head was still on the verge of exploding and I was holding my left eye in for fear that it would pop out from the sinus pressure built up in there. I did the unthinkable, I went back to Dr. Awesome and let him schedule an MRI to look at my “noodle”. I begged, pleaded and would have gone in for it kicking and screaming had it not been for a magical little pill called xanax. You see, this was my one exception to the rule. I knew I couldn’t do an MRI without this, I’d tried years ago. This time even with my little friends to keep me calm, I still asked the guy to open the machine up, so I could see the working parts. The MRI guy declined, but was nice enough to put my head in the restraint with a mirror so I could see out. After an hour and a half I was done. Thank God. I then call a few days later to see if they had any results only to find out the very nice guy did it wrong and I’d have to go back. Again. …. Into the tube. Awesome. Well, either that, or there was nothing in there.

I went in a second time, got the images done, and they were good. I smiled really big too. It took a few days to get any word back, I do remember the phone conversation with Dr. Awesome’s office saying “he did notice a congenital defect”. I called and got a copy of my images and the report, but in the mean time I went back to Google U and looked up everything I could find on congenital brain defects. I could not believe what I found. It was as thought all the questions I had, and the ones I didn’t know I had, were answered. I called my mom who told me to stop looking for stuff wrong with me and that I cause more harm than good looking on Google for these things. To me it was plain as day. I had a Chiari Malformation. The symptoms read like my life story. I told my mom I would wait to get the report from the MRI before I jumped to any conclusions. I got the report and there it was in black and white: Chiari Malformation. I called my mom and did my “I was right” dance.

For more information on Chiari Malformations click here:
http://www.conquerchiari.org/index.htm

I was referred to a neurologist and took the Captain with me to that appointment. At the time, I knew what it was and was not expecting anything ground breaking in this appointment, but I was not expecting what happened. The man pulled out a book and looked up Chiari. I don’t remember the name of this Dr or else believe me I would tell you, he pulled out a safety pin, scratched me with it a few times, held my x-rays up to the light, and pulled out a book. He told me I did not need surgery and sent me in for another MRI to check for Syringomyelia, or syrinx for the pronunciation impaired (damage to the spinal cord due to the formation of a fluid-filled area within the cord).

I remember leaving the MRI and calling my mom saying I was sure they would find the syrinx because I have felt like there was a chip clip on my back for months. I was accused of “looking for shit” again, but I didn’t care. I knew this was what was going on. I know my body and I know what’s normal and what’s not for me. There were several things that I had noticed but never told a soul. I had been accused of being a hypochondriac when I was young and took that as a cue that I complained too much. I only brought things up if I was scared, and even then, I was very careful what I told my family.

A week went by, then another. I called the Dr and was told he was on a month long vacation in India. (Glad I was a priority) I threw a fit on the phone and they said they would have the other dr in the office look at my films to see if they saw a syrinx – Another week went by. I called again and got “oh she hasn’t called you?” About two hours later I received a phone call from a woman who said “No Syringomyelia, you’re fine. Take the prescription the Dr gave you”

Crap. Now I have to watch my mom do the “I told you so” dance.

I called the place that took the MRI images and got a copy of everything. This was one of the smartest things I did. ALWAYS ALWAYS get a copy. They will put them on a disc and it doesn’t take long. It’s very important to have your own set of your images. This is your right as a patient, do it. Plus the images make great Christmas cards!

This was all in Sept and I did not buy it. I went to another neurologist in Dec and this time I took my mom. The Captain and I were talking about having kids and I didn’t even know if I push a kid out. I
had read so many things saying no. The straining of pushing was bad and the epidural would cause more problems. Anyway, back to the Dr visit, she took a look at the films and sent me to Dr. Ellis, a Neurosurgeon.

Dr. Ellis took one look at my images and said “a doctor saw this and said you didn’t need surgery? Now I’m going to say something that unless you have been in this situation, be it Chiari, or anything else that causes chronic pain, would be terrifying. The man told me I needed brain surgery. I felt a wave of relief over me that nearly made me cry. I was so happy to hear this for a number of reasons. One being, I could finally get some relief, and another meant I was right all along, about everything. -oh and I did have a syrinx.

Part II. Treatment:

I was so happy. I was even aware of what he surgery entailed, but I still can’t describe the relief. Dr. Ellis wanted to have me come in again with the Captian, and my mom so everyone was on the same page.
My mother, who was there when my dad went through treatment and then died of leukemia, remained quieter than I thought she would during this visit. The Captain, however, piped up with a lot of questions. His normally quiet self, was temporarily replace with someone else.

I just realized I should put some pics up here.

Anyway, now that I knew I had to have surgery, I had to tell people. Like my family, and my friends, and my bosses. It was part me telling them in a matter of fact way, part me reassuring them that it was no big deal (it was) and that I would be fine (I was not sure myself). To be honest, I was scared and excited at the same time.

The company I had worked for had amazing insurance . When I say amazing, I mean crazy good. The former owner is a very smart man who believed if you took care of your employees, they would take care of you. And it was true, by the way and you’ll see here in a minute. But I still had to tell them, and I didn’t want to. The first boss I told was our Sr. VP. Start small right? I knew my boss would go and run to him the second I left her office, and I wanted to be the one to tell him. I respect this guy, and was proud to work for him. That being said, he regularly made me feel like a blubbering idiot, because he’s the quiet type, and I can’t ever shut up when it’s quiet. So I went in his office, and told him what I had to do, what the surgery entailed, how long I’d be out, and what I would need to do when I came back as far as recovery. At some point I broke down and cried. I’m not sure why, other than I can’t look like anything more than a dope around this guy, and maybe because he was genuinely concerned for me. Not as a boss would be, but as a person would be. I can’t tell you how much I appreciated that. And still do.

Then on to my next boss. She seemed concerned for me, but in a “gosh I hope you’re going to be ok, oooh, crap, if you’re not, I’ll have to find someone else to track and bill the hedging”. I told her that the doc said I’d be laid up for 6-8 weeks, but I had a timeline in mind I wanted to keep to.

About that timeline. At the time, I still truly loved my job, and I still love the company, and love and respect my VP. I was determined to be back to close out the month…. In three weeks. That was my goal.

The day of my surgery finally came and I was terrified. I’d never really had surgery before, and my first one was BRAIN SURGERY? I was taking my go big or go home attitude a little too far.
So here is basically what they do:
Drill a hole in the back of your head at the base,
Then, depending on how far the herniation is, they remove part of a vertebrae or two, or whatever
After that, they take out the cerebral tonsils (the part that’s hanging down) and try to replace the vertebrae if they can,
Then they take a dura patch, either, self donated, bovine, or synthetic and patch you up.

Apparently, with me as soon as they drilled the hole and removed the part if my skull, my dangly brain snapped back up into my skull close to where it was supposed to be. He still took them out though, and wouldn’t let me keep them. Butthead. He also found that my vertebrae up there were not closed. And when he put them back together, he left the gap in there too. This is a form of Spina Bifida and that’s not uncommon with Chiari. In fact, they are all related and tied in to one another, In fact, I could be wrong, but I think Chiari Tyle IV is the more common Spina Bifida. Either way, this has saved me in my opinion. I know chiarians who are way worse off than I am. They are severely disabled, some can barely get out if bed, and yes, some die. I believe that this opening gave me a little extra wiggle room, for my brain. I also believe that Dr Ellis played a huge roll in how active I am now. I have only one restriction, and that’s not to pop my neck. Which is HAAAARRRRRD! When you quit drinking or smoking, you can not buy them, or remove yourself from temptation. You can’t do that when its your neck. Anyway, I am not restricted from boating, jet skiing, or really anything. He told me that if I feel comfortable doing it, go ahead.

When I had the surgery, they took my hair. Not all of it, but half of it. Dr Ellis is a fantastic brain surgeon, but probably the second worse hairdresser I’ve ever had.

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The worst was the one I had with a drug problem who just never could get my hair even.

Luckily for me, I have a ton of hair. In fact, I could wear my hair down and no one was the wiser to my lack of locks in the back.

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Honestly though, where’s the fun in that? I had BRAIN SURGERY! How many people do you know who can say that? A lot of people have knee surgery, or open heart surgery, or their tonsils out. I had a tonsillectomy, but they removed my cerebral tonsils! (I still have the others by the way) I was proud of what I had been through, and still am. I told the assistant chef at school one night about it and he said,” you’re not going to get sympathy from me”. Sympathy? Who wants that? I tell people because I want them to know I’m a bad ass!

I came home from the hospital with 40 staples down my head. This is why we are called zipperheads.

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Oooh sorry, at one was graphic, I shoulda warned you. And on a food site too. Bad Zipperhead! This was after the staples were pulled and I was allowed to wash my hair again! That was a great feeling, but a little daunting.

Up to this point, I was only allowed to take a bath, and I had to have someone in the room. I guess they were worried I would faint in the tub or something?

My recovery went fairly well. I had the surgery on a Monday, was in ICU for one night, a regular room for two more, and home by. Thursday. I just wanted to crawl Ito my own bed, and take a nap, but we had one of those memory foam mattress toppers on the bed that was about 4″ thick. So I crawled into bed and got stuck. My neck had all the strength of a wet noodle, and I couldn’t do anything. I couldn’t roll over, I couldn’t sit up, I don’t think I could even call for help. I was just stuck there hoping my husband or mother would come check on me soon. They did, thank God! They only laughed a little at my expense, but I can’t say that I wouldn’t have done the same. Only I would have taken pictures.

The following week, my mom would come over and hang out with me and take care of me. She helped out with the cooking, the cleaning, the laundry, all the fun stuff, while I laid on the couch or when it was nice out, I’d lay on the furniture outside. I was worried I would go back to work with a tan and I’d get the side eye from everyone. Luckily for me, I’m Irish and I don’t tan.
After a day or two, my mom had my whole house cleaned and grew restless, so she decided it was 1)time for me to get up and active & 2) time to clean out my closets and dressers. I never like it when she decides I need to get up and be active by the way, it always ends up with me doing something. She was right though, I DID need to get up and not just lay around. My muscles needed to be active so they could rebuild and I needed to get my blood flowing so I could heal. I wasn’t doing anything crazy mind you, I just wasn’t laying around on my rear waiting to get better.
The following week, I was on my own. Doug was back at work, and my mom let me take care of myself. So this was week three in my timeline. The clock was ticking. I had a doctor appointment the end of this week to get released to drive, and in my mind, to let me go back to work.
The first answer was no, but I pleaded my case, and we settled on me going back for three to four hours a day, I would walk every 20 mins, and it was a short week, because of Good Friday, so I would only do it for four days.
I only needed three to get my hedging done, but I didn’t say anything. I had achieved my goal of being back at work after three weeks.
In hindsight, I should have let my body heal more, and not tried to get back. I did it out of loyalty and wanting to make sure the job was done right, but in reality, it was just a job, someone else could have done it, and at the end of the day, it just didn’t matter. No one gave me a cookie for coming back, and at the end of the year it was forgotten all together when they gave me a bad review for not doing someone else’s job better when they were out on maternity leave. The moral to the story is this, put your health first. This was a turning point for me and a lesson. My job was just a job, my health, my family, and my life was what was important.

3 Responses to Chiari Story

  1. Sara says:

    Thank you for this blog. I was diagnosed with Chiari recently and will be having surgery in a couple months. I am in my mid 30’s, and like you have been having problems for years. Many of the Dr’s I’ve seen have made me feel like a junkie because I was constantly in their offices trying to find something to make me feel better. I hate taking meds but was willing to try a few to see if they would help. Nothing does. I’m pretty nervous about the surgery but I will be happy to go through it if it means feeling somewhat normal again.

  2. Jess says:

    I also want to thank you for your story. I have chiari malformation. I also went through several years of going do “doctors” with almost identical results…which is to say, none! The doctor I had gone to since I was a teenager basically called me a wuss. Even if I DID have a low threshold for pain, it would still mean I was suffering greatly, right? I have since discovered that quite the opposite is true. My threshold for pain is pretty enormous…normal pain, that is. The skull crushing pain of a crippler, as I call my headaches, is of course, another matter, entirely. I am fortunate enough not to have loss of mobility (yet?). My symptoms are primarily the debilitating head pain. My Dr. Awesome is my pain management physician. He and his staff have been central to salvaging any “quality of life” as the medical community likes to call it. But being tested over and over, only to be told everything is “normal” and being repeatedly made to feel like a junkie or asked to leave a hospital e.r. because they believe you to be a “drug-seeker” I’m in touch with those emotions! Even though my doc is primarily a pain management doc, he was relentless in trying to get to the bottom of wtf was causing an otherwise healthy 20, then 30-something THAT much pain. Well a radiologist was the one who finally figured it out. Thank God for whoever that dude was! Thanks again for your story!

  3. samantha says:

    Thank you for your story. It is amazing how crapp some doctors are. I know your story personally because I went through the same thing. I was finally fed up when I was 6 months pregnant and the right side of my face and right arm went numb. Still I went another 2 years without a diagnosis. When they finally figured it out I had a 16 mm herniation and a cyst throughout my entire spinal cord. not to mention the permanent nerve damage. I had surgery and still struggle a little but over all doing good. P.s. I have an intense love for food and cooking.

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