Does anyone know how Zi can find a ciari specialist in my area?

[KD897]

I've suffered from migraines for over 9 yrs and seen numerous neurologists. Therefore, I am no longer seeing a neurologist. I only have a primary physician. I've had just about eevrything they offer for migraines. I was told the results of my last MRI showed that my brain sits too low in my school, which leaves me predisposed to headaches. My doctor referred me to a chiropractor that she said deals with the condition.  I had a consultation with the chiropractor and he told me the condition was called chiari, because I had been trying to research it. However, no one has told me what degree or assigned a number to the results I was given. I'm having another doctor look at my results.  

However, I'm currently taking topamax daily and imitrex injections as needed for the headaches and it's no longer working. My doctor has no idea of what to give me because I've tried so much. I have numbness and tingling in my hands and the right side of my face. also, my hands tremble very badly.  I also have neck and shoulder pain thats new. I also just saw that you all don't recommend chiropractors. I'm in dire need of a knowledgeable medical professional. I'm open to any recommendations.

[selmaS]

Hi ur PCP can order the testing if he/she is open minded and willing...not all will and it depends on ur insurance what they will allow a PCP to order....so do ask....
u may want to try to get to a NL that can order these tests until u get to a true chiari specialist.

"selma"

[*Stormy*]

Hello and Welcome,

It's amazing to me that you had a chiropractor dx your condition!! When Chiari was seen you should have been sent to a NS to confer with!! But that seems to be the way it is with CM, there is a lot of misinformation out there.

I would check into the suggestions above asap and try to find an experienced NS.

To me, it sounds like your condition may be progressing, I started out with headaches and then it followed with neck and shoulder pain. So, I think the sooner you find some help, the better. Do you have an issues with your gag reflex or swallowing? That is also sometimes an early sign that things are progressing.

Please keep us updated!
Carolyn

[Shane99]

Dr's Carl Hampf and Gary Strickland of Baptist Medical in Nashville are my doctors and I recommend them highly.

[KD897]

Can my primary doctor test me for CSF blockage, a syrinx, tethered cord, Ehlers-Danlos. or ne  chiari related conditions or issue or can it only be done by a chiari specialist?

[selmaS]

Hi and welcome to the Chiari forum.

We do have a list to help u get ur research started...it is not a complete list nor a referral...it is a means to help u get started in finding a dr u feel is best for u...many do have to travel to get to a dr....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

What u need to find out nest besides a local dr to visit as well as a true chiari specialist is do u have a CSF blockage, a syrinx, tethered cord, Ehlers-Danlos. or ne  chiari related conditions or issues.

"selma"