I have been "diagnosed" with Chiari via the radiologist that viewed my MRI. I have my first appointment with Mayo tomorrow. The neurologist that originally ordered the MRI had no idea what Chiari was, so I'm trying out Mayo. I am going to the clinic in Jacksonville Florida - have any of you gone? Do you have any experience, good or bad, with them? I have waited SO LONG to get to this appointment. Knowing you have Chiari and now knowing your measurement, if you have a syrinx, and what your CSF is doing.... I just really hope Mayo knows what they are doing.
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.
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 :)
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....
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.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.