Just realizing this is from 2011 :). Oops
If you go, let us know how it went, I'd love a good story from that clinic. We are considering a move to Jacksonville area, and would be good to hear what you think.
We see Dr. David Frim at Univ Chicago his number is 773-702-2123, that's the direct line to neurosurgery dept, they are responsive, but if you get appointment, you could be waiting a long time bec he takes all emergencies and/or takes time with patients. He is v good. I bring this up so you can fill in info on the doc chart, Selma :).
In addition, I've not heard anything too great about Mayo for chiari, as you stated. My other chiari groups, there has not been one happy patient, they seem to not take chiari v seriously.
Here is the link to our list of Drs so u can start researching other Drs......but, u never know what u may learn from these Drs. u have the appt already set with.....
http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
I saw a few that were a total waste of time, but it helped me show my DH where I really needed to go...so , it did work to my advantage, but...it can be costly.....
Even Drs with Chiari as an interest does not mean they r well experienced....do ur homework and be sure u r comfortable with them....
"selma"
Thanks, Selma. I looked up both the doctors I am scheduled to see, the neurologist and the neurosurgeon. Neither one of them has Chiari as their "interests" on a bio. That bothers me a little. I just don't know what to do - it took a long time to wait for the appointment and it seems that my symptoms are traveling at lightning speed. I stayed home from work today due to a now 4 day intense headache and I can't even function like a normal person. This is so frustrating!
I will hope for the best and see if the Dr tomorrow has even a CLUE that Chiari causes headaches :)
Thanks for the reply, Selma!
Hi and welcome to the Chiari forum.
I am not familiar with neone going to ne MAYO location for chiari and it being a true chiari specialist that was available there....MAYO itself is a well known clinic for many conditions, but to date I have not heard of Chiari being one of their specialties.
Only u going and finding out will be able to let us know about the FL location...we add Drs names more so then locations as it is the individual that u want that has experience with chiari not just a big named clinic.
There is a NS in Miami that is a chiari Dr....do take time to ask questions, u may find someone there we do not know about yet...and u can add the name to our list!! : )
Be advised u may need to see several NS's b4 u find the right one for u.
"selma"