Teenager with Diagnosis chiari formation type l. Does anyone have a neurologist in Nevada with a specialty in this? In the information I have read limiting physical activity is mentioned, does anyone have a better definition of just what should be limited? The Doctor specified no contact sport or other straining. I would welcome any comments on activities like gymnastics or bowling or stage dancing which all seem to greatly intensify pain in all body areas and the headaches.
We do have a list of activities to avoid with Chiari and Syringomyelia in the Health Pages here is a link to the pages, u may find more info including a list of Drs and tips in there as well as that list.-http://www.medhelp.org/health_pages/list?cid=186
U have to listen to ur body as to what u need to avoid as we will all be affected differently as it is possible to have other related conditions, so instead of looking for a NL,. u may want to locate a Chiari specialist that can help with the testing u should have done next to see what else is going on.
Did the Dr that DX'd u do testing for CSF flow? Look for a syrinx? tethered cord? ICP, POTS, Ehlers-Danlos?
Thank you for your comment referring me to the Health Pages! We found lots of answers there. We have a neurosurgeon appointment for a second opinion. Hopefully, he will do more testing, but he's no specialist in Chiari. Lots of complications with headaches, profuse vomiting, depression, insomnia, digestive issues and heat intolerance as others have mentioned so there have been tests for many of those issues. It really does make a difference to have a name of what could possibly cause so many things.
Experience has been, if it is not a Chiari specialist u get brushed off as it could not possibly cause those symptoms u mentioned....but, it may help to go and get thru to see just what this Dr may or may not know...many times we get referred to a Diff Dr....told it is anxiety, depression etc...so we have dubbed this The Royal Chiari Run Around.
Glad the Health Pages were helpful to u....keep us posted on how it goes with this Dr....and keep asking questions : )
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