Mayo Clinic: Yes or No for Chiari / EDS III / CCI?

[kris278]

The Mayo Clinic is obviously world renowned, but I've heard many mixed reviews regarding their ability/willingness to diagnose and treat Chiari, Ehlers-Danos III - Hypermobility, and Craniocervical Instability (CCI). Some people say Mayo is great at evaluating these conditions and others say they're not. I've also heard some say that Rochester is good, but Jacksonville is not.

Does anyone have any thoughts? Have you been to Mayo? Anyone out there that has some combination of Chiari, EDS III, and CCI?

Am desperately in need of some help and recommendations from those of you that may have been through this already.

[skrowe]

I only recently discovered Chiari after a lifetime of searching for answers to my own symptoms, I go to mayo in LaCrosse wi, not by choice but because mayo owns our insurance company, so we are ONLY allowed to see mayo drs. (yay) I have never had a good experience. EVERY person has their damn nose in the air and they ALL already know whats wrong with you, and its always that youre a mental case. end of story. I wish their true nature were publicly uncovered.

[deana57]

Hi… I posted my disappointment about Mayo Clinic in answer to part of your question. However, on another note this is what you need to do… because I am going through this as we speak. Find yourself a top notch neurologist who will immediately order a Stand-Up MRI of the brain AND the cervical spine areas...because a recumbent MRI may only catch a glimpse of this if it exists and for certain most radiologists will overlook it.... (it was missed on all my previous recumbent MRIs... but, my neurologist saw specific indications that it is indeed there)...A stand-up, weight-bearing MRI will catch it. There is also a specific protocol for the test that must be followed in order to catch the other aspects of this that you asked about.

I stress finding a top-notch neurologist because I also went through 4 previous neurologists who missed this.  Do a lot of research and find the most well loved neurologist in your area by reading the stories of other people's experiences with that particular person....Not the one who has the highest rating because those are the ones that are frequently planted. Otherwise, you'll waste valuable time like I did with the wrong doctors who will not diagnose you correctly.

[kris278]

Thanks so much for all your feedback! Unfortunately, I keep hearing so many people that have had similar takeaways from Mayo. It sounds like they get so many people through the door that every patient gets the same cookie-cutter workup. I can't imagine how frustrating that must have been for you.

And your suggestions for the additional imaging I'll definitely need to research. I'm in FL for the next couple months and am not as familiar with things down here compared to up in NYC. But I definitely want to get things moving along here!

Did you ever get a Chiari diagnosis? Surgery? Treatment? If you're willing to share, I'd love to hear how things progressed and if you had good "take aways" or suggestions for GA/FL doctors.

[deana57]

Hi...I just saw your question about Chiari and getting diagnosed and going to Mayo Clinic and it caught my attention while I was looking for particular answers of my own.  I went to Mayo Clinic Jacksonville last summer for 2 weeks and it was the biggest waste of time and money and energy that I have ever been through. It was a joke. My husband and I could not have been more disappointed. They basically order the same group of tests for every single patient that comes there no matter what the problem is. They completely missed my probable Chiari with their CT scan.... In fact, they even missed the brain lesion that was sitting there right in front of them. I think they would miss a sick person walking by them. I have no confidence in that place. Please don't go and waste your money or your time there. The only thing they are good at is marketing. Their marketing department is top notch.