Chiari malformation
Oh the fun disability I have *insert sarcasm here* that likes to wreck havoc whenever possible. For me, it also joins up with autism whenever it can for extra mayhem.
Basically, its a birth defect that causes the skull to be too small for the brain at the back near the opening to the spinal cord and the cerebral tonsils become so crowded that they drop down into the spinal canal and press on the brain steam.
Many doctors incorrectly believe that surgery will cure it. Surgery is only there to (hopefully) stop it from progressing and getting worse than it already is with bonus points if anything improves or resolves (if youre at the point where a neurosurgeon wants to do surgery for chiari, its already symptomatic with neurological symptoms [aka more than just a headache and neck pain such as dizziness, numbness, apnea, fatigue, tinnitus, etc]).
Im post op type 1 chiari on three different pain meds and taking essential oils with permission from my neurologist because he doesnt want to risk upping my meds because the potential side effects on higher doses are too great (seizures being the big one). I have pain every day, with occasional breakthrough numbness, dizziness, and tinnitus. When I get sick, the chiari really ramps up and I require medical care (and urgent care hasnt been too nice about it either).
that sound very challenging, mainly when we disagree with professionals
I know this post is almost a year old, but just wanted to say hello if you're still active on here! Fellow Chiarian here. :)
Me too!!
I have Chiari and I keep getting it's to small to cause your symptoms. My PCP listened and referred me to a specialist but I got put with a different Dr. I go tomorrow. I hope he's actually a specialist because he's rated in the top 3 neurosurgeon in his area. I read his reviews and people love him!!
It's crazy because surgery may help, may not help or may create more problems and the need for more surgeries. I don't want surgery but I do want help.
