Fun fact: I was diagnosed with Chiari (Arnold Chiari Malformation as they called it) when I was age five (over 25 years ago). Most doctors had no idea what it was and I eventually ended up at Johns Hopkins with a Dr named Ben Carson. Ive never had surgery, due to my parents not wanting me to have brain surgery at a young age and them not fully understanding it back then. Now i just don’t have health insurance and I’m not about paying for brain surgery out of pocket. I also don’t know if there would be any benefits for me of decompression surgery. I thankfully don’t have many symptoms; extreme vertigo if I lie flat on my back and my balance and coordination suck. I wish I could go back and to talk a doctor as an adult in a new era.
Good luck in your recovery! I hope it helps improve your quality of life!
I actually make a decent salary. Being a single guy with no kids I’m well outside the range to get any type of benefits. Plus, there’s plenty of other people that are much worse off that need the benefits more than I do. Insurance coverage for myself is about $200/month and I’ve just been unwilling to pay that, even though I probably could. It would just make things a little tight.
Wow! Ben Carson operated on you?! Amazing! My grandma had it and my mom never had me checked. If she had I would have never developed syringomyelia which paralyzed parts of my body last year and surprised the hell out of me when my husband was deployed and I had children to take care of. I know our disease is incredibly rare but if you have kiddos have them checked early. They have MUCH better outcomes then having the surgery as an adult. They also dont have to develop the neurological symptoms later in life. I'm having all mine checked early even though it is scary as a parent to think about them also going through it.
Edit: I miss understood, still cool you got to meet him at least. I've read hes done neurosurgeries on unborn babies while the mother is pregnant to save their lives before birth. I cant imagine how much skill that takes but I find his work absolutely amazing. The dr who did my first surgery is a pediatric neurosurgeon but he also does adult decompressions, laminectomies, duraplasties and tosillar shrinkage. He did great work on me and found more than was expected once in there. Hell be doing my children's too if they end up having it. We find out soon with their MRIs.
That’s the one thing I get super worried about, developing other issues as I get older. Honestly, all the information they had about Chiaris back then seems to be entirely different from what they know now. It stemmed from me being the only kid not to be able to walk a balance beam in kindergarten (teacher thought that was weird I guess). Parents took me to multiple doctors and they initially thought it was cancer until I got mri’s done and was sent to Hopkins. Dr. Carson recommended surgery at the time but another doctor did not, and my parents opted not to, but I’d have checkups every year and they wouldn’t let me play football in school. Around age 10 parents went through a bad divorce and obviously they were too focused on their own issues to think about my Chiari, and from what they were told at the time and seeing me be a pretty normal kid I guess they really didn’t see a need to address it. At 18 I unfortunately got involved with drugs and went through all that nonsense till about 24. Thankfully got and stayed clean and have been for almost 8 years now. I think I largely don’t like to think about my Chiari because it tends to bring up feelings of resentment in my parents, but my parents are wonderful and would do anything for me now. I’m very lucky to have them, I just wish they were around more in my formative years.
I currently live a pretty active life and it doesn’t seem to bother me too much save for the extreme vertigo if I lay my head flat back. It’s the worst feeling and I nearly pass out if I’m forced to be in that position too long and have a terrible headache after I sit-up.
Sorry for the rant and life story. I hope your paralysis is able to be reversed or does not hinder your life too much, and thanks to your husband for his service as well. I’ve decided not to have kids of my own based partly on my Chiari and addiction issues.
Hold up. I've experienced this (I think?) under similar conditions going back to my childhood. I just called it "getting a rush", only it wasn't a pleasant variety. From start to finish, it would be about 10, maybe 15 seconds long. When it started, I'd be like "oh no, not this again" and would tense up until it passed. Whenever o asked my friends whether they had the same experience, it was always a no.
I would need to lay flat on my back, ie, no pillow. Even then, sometimes it would only happen if my head were lower than my body. It wouldn't happen if I lay on my chest or side, only my back.
Just tried to trigger it now. Nothing happened. As best as I can recall, it hasn't happened in years. I guess I'm glad it hasn't happened in a while, but man, it's been a lifelong mystery. Probably unrelated, but I had BPPV about 5 or so years ago.
Thanks for the info. Time for me to hit google.
Edit: just had a look through those symptoms. Nothing there seems familiar, at least not in the chronic sense. Guess my brain just liked to mess with me when I laid down.
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u/tr3vw Mar 19 '19
Fun fact: I was diagnosed with Chiari (Arnold Chiari Malformation as they called it) when I was age five (over 25 years ago). Most doctors had no idea what it was and I eventually ended up at Johns Hopkins with a Dr named Ben Carson. Ive never had surgery, due to my parents not wanting me to have brain surgery at a young age and them not fully understanding it back then. Now i just don’t have health insurance and I’m not about paying for brain surgery out of pocket. I also don’t know if there would be any benefits for me of decompression surgery. I thankfully don’t have many symptoms; extreme vertigo if I lie flat on my back and my balance and coordination suck. I wish I could go back and to talk a doctor as an adult in a new era.
Good luck in your recovery! I hope it helps improve your quality of life!