Chiari Online Support Group

EDS and Chiari/CCI

Hello all,

I live in Southern California and I am looking for a Neurosurgeon with experience with Ehlers Danlos, CCI and Chiari. If anyone has any recommendations I would be delighted to hear them. The reading I have done so far suggests that there aren't too many Neurosurgeons out there with experience in both Chiari and EDS. Does anyone else find this surprising considering that at least 12% of Chiarians also have hypermobility?

Hello. I do not live in your area but stand strong, you will find the right doc dlfor you and your needs. I have chiari and hyper mobility. I did not know there was a distinction between the two. I have always been very flexible. I wish you well.

Hello,

I also live in Southern California and it's interesting how hard it is to obtain help regarding this illness here. I was referred to a number of neurosurgeons whom had little knowledge in the area. Recently I was referred to the Inland Neurosurgery Institute in Pomona, CA. Reading all the reviews regarding this institute it should be one of the best. I will let you know how my actual appointment goes.

I had my surgery 5 months ago, and my neurosurgeon said the only thing an EDS diagnosis would mean for him is regarding his method for surgery, but he is already cautious with Chiari patients due to possible EDS comorbidity.

He told me that I would need to see a rheumatologist for EDS diagnosis, since they specialize in connective tissue disorders. I’m in Sacramento and it’s been quite the road to find a rheumatologist who will diagnose and treat EDS. My pain mgmt Dr said he believes there is an EDS specialist at UCSF, so I’ll be looking into it. This might be an option for you if you’re willing/able to travel.

Have you tried any teaching hospitals? I was diagnosed with occipital neuralgia and it’s a direct result of the Chiari surgery, and it’s a bad case of it (been outit of work Side surgery 5 months ago). The teaching hospitals have been the best so far, especially Stanford. Stanford is an amazing hospital. Nothing better on the west…It would be worth looking into, IMO.

Please feel free to browse/join the Ben's Friends - Ehlers-Danlos Syndrome community for additional support/information.