New here - Mayo Clinic experience?

[amisoup]

Hello, everyone.

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.

Thanks in advance, and nice to meet you!

[nancyanny]

Just realizing this is from 2011 :). Oops

[nancyanny]

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.

[nancyanny]

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.  

[selmaS]

  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"

[amisoup]

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!

[selmaS]

  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"