Wednesday, October 20, 2010

A Real Horror

My story

I’ve always had headaches and migraines. During 7th-10th grades they got progressively worse. It was sophomore year in March/April of 2003, when the pain got the best of me. I was waking up in the mornings with so much head and neck pain, that it forced me to throw up. The puking eased the head pain for awhile. I was missing a lot of school or was late because sometimes it was so bad that I just couldn’t deal with it. There were days where I couldn’t move my neck or turn my head at all. Some other symptoms I experienced were numbness/tingling in my limbs, lightheadedness/dizziness, decreased sensitivity to temperature, balance problems and more. Finally I went to my family doctors to see what was going on. He had me try Imitrex for ‘migraines’. It didn’t help at all. In fact, it only added muscle pain in my shoulders while it was in my system. I went back to him again, this time while my head wouldn't turn. He ordered an MRI and then referred me to a Neurosurgeon without us even seeing the results.

I saw Dr. Robert Schlegel of York Neurosurgical Associates in York, Pa. Dr. Schlegel ordered some more MRI’s and there we found out I had something called Chiari (Key-r-ee) Malformation and Syringomyelia (sear-IN-go-my-ELL-ya). At the time I didn’t fully understand what it was but I got the gist. I understood that the lower part of my brain was growing down through the hole in my skull (foramen magnum) and putting pressure on the back causing the head/neck pain and vomiting. Also, that I had a pocket of fluid in my spine that was caused from the pressure in my head. Dr. Schlegel told us about Decompression Surgery and how it could help relieve the pressure but was not a cure. They would remove a small part of the base of the skull. And if they had to, part of the cervical vertebra (C1). (I wasn’t taking it all in at the time. When I realized I had to have surgery I was worried about the fact that part of my hair was going to be shaved off and that was pretty much it.)

Surgery was scheduled for July 25th, 2003 at York Hospital. Dr. Schlegel and Dr. Winer performed the surgery. I was told afterwards that it was good they got in there when they did because the base of my skull was eggshell thin. I was in ICU (Intensive Care Unit) for a little while recovering. The pain after surgery felt much worse than before. It felt like my brain was trying to push out from every opening it could find. There were constant ‘explosions’ of pain going off inside my head. I was constantly puking from the pain. I couldn’t keep any food down. I was ‘eating’ ice-chips. The pain medicine they gave me didn’t seem to help. I hardly slept. My mom stayed with me every night because I didn’t want to be alone. I was finally moved to a regular room but unfortunately, I was put on the pediatric ward. There was always some kid crying or screaming, that didn’t help. All I wanted was to go home. They wouldn’t let me leave until I was able to get food down and keep it down. I also need to get up and walk around daily. My walks around the nurses’ station were blurry. I couldn’t see (because I wear contacts/glasses and didn’t have them because I was in too much pain to bother) and was very dizzy. I was in the hospital for a week.

I was finally able to go home when I kept some food down. Dr. Schlegel sent me home with Percocet for pain; which did not help at all. We hardly made it half way home before I started vomiting again. Every bump and turn was murder. The following week I had a follow-up MRI and visit with Dr. Schlegel. I was still having trouble keeping food down. Mom bought something like Pedialyte and I was at least able to drink that for some kind of nutrition. I still couldn’t sleep and the pain was not getting any better. Dr. Schlegel prescribed a different medicine for pain and to help me sleep. After taking that (I do not remember what it was) the pain started to subside and I was finally able to get sleep. I was beginning to keep food down. It took about 4 weeks to recover and start getting back to being myself. When school was starting I was given the chance to hold off until January, I did not want to fall behind. I fought hard to start school and live through the pain I still had. I was not symptom-free. It was not the same pain. Nowhere near as bad. I was not puking every day. I am restricted in the activities I can do. I can no longer ride roller coasters, play contact sports, and things like that. I have friend 'head gaurds' at rock concerts when jerks throw glass beer bottles through the crowd and mosh. Haha they cover and protect me well!

Today I still have head and neck pain, numbness/tingling in my hands and feet, lightheadedness and dizziness, balance issues, trip over my words, etc. I may look fine and normal, but looks can be deceiving. Not to say that I’m always in pain, but Chiari is usually kicking me somewhere.

Chiari Malformation affects about 1 in 1,000 people. 


Comments are appreciated :)

13 comments:

  1. Very nice, I think its awesome of you to share your story. Hopefully it will prove an inspiration to someone

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  2. I had 2 mri's that came back positive that I have Chiari 1 malformation. 5cm. I see a neuro suregeon jan 4th.

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  3. Good luck!! If you need anything feel free to contact me!

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  5. Thanks for sharing your story... I was decompressed 4 1/2 years ago. Lauren Lynch (CM&SM)

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  6. Sounds a lot like my neice :( thanks for shareing

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  7. I was decompressed in 03 as well. I feel your pain everyday. I wonder sometimes if this is my life. It's so hard to do anything and no one except my husband understands. It gets quite discouraging but i go on. I have a four year old grandson who doesn't understand of course so I try to do rverything I possibly can with him and i don't make promises that i may not be able to keep. Hang in there. Hopefully with spreading awareness at least more people may begin to recognize what Chiari puts us through daily!

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  8. Just found your blog. I was diagnosed in December 2012. I will see a neurosurgeon in about 3 months when my insurance kicks in. I think my case is not that sever as my symptoms are not as sever as yours were. But we shall see what the surgeon wants to do. I'll be reading!

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  9. Thanks for sharing your experience here! It was surreal to read your story because it mirrors mine so closely. I had the same early hard-to-diagnose symptoms, and was finally diagnosed with Chiari in 2003. I was also 15 years old. I had my decompression surgery 3 months after you, and have similar post-op symptoms. You are definitely not alone (though it often feels like it, I know) and my thoughts go out to you. Thanks for raising awareness around this condition and I'm wishing you the best!

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  10. Do you have to avoid contact sports for the rest of your life after surgery?

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  11. Thank you for sharing your story!!
    Over this past year it's been a struggle as I've been diagnosed w/ Chiari Malformation & End up w/ 2 emergency brain surgeries because of it.. Still battling w/ pain and no reliable doctors; My Neurosurgeon or Neurologist won't return my calls. Needless to say I've felt so alone because "no one understood me.." until I sought out other stories over the web.. There is hope!

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  12. Hi Alicia! Thanks for dropping by my blog. The latest in my Chiari story has just been updated in my last two blog posts. I had fusion surgery on May 20, 2014 in NY. I see that you are following my blog. Use my email contact on my blog to drop me a line. I'd love to talk to you sometime. I'm trying to catch up on you through your blog. Chiari isn't just an illness ... it is a way of life ... isn't it? Love the name of your blog. Hope to talk to you later. -- Mary Elizabeth

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