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Hypermobile Ehlers Danlos Care Team at Mayo Clinic?
Does the Mayo Clinic in Arizona treat Ehlers Danlos Syndrome and it's comorbidities? I am awaiting genetic testing for it. I have three doctors who think I have the hypermobile version and the possibility of the vascular version because of my family history. I am looking for a care team and saw that Mayo has care teams for EDS, but it didn't say which of it's 3 locations offered it. Even though I live out of state, the Arizona campus would be very convenient because my sister lives right next to it, so I would have lodging and support while I was out there.
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@cindyhowell, welcome. Mayo Clinic treats patients with Ehlers-Danlos syndrome and hEDS at all three Mayo Clinic locations. The comprehensive EDS Clinic is located at Mayo Clinic in Jacksonville, FL. https://www.mayoclinic.org/departments-centers/ehlers-danlos-syndrome-clinic-florida/overview/ovc-20522975
In Florida, the Mayo EDS clinic offers comprehensive evaluation by doctors with expertise in caring for people with every form of EDS, including the rare and complex — EDS of known genetic causes, hypermobile EDS and hypermobility spectrum disorders (HSD). They evaluate, diagnose and develop care plans tailored to the needs of each person. Ongoing care continues with your local team closer to home.
To learn more about EDS care at Mayo Clinic, you can call the Ehlers-Danlos Syndrome Clinic in Florida appointment office at 904-944-3149
I had T4 to S1 spinal fusion 4 months ago, and am having numbness to the touch, feelings like electric shocks, deep throbbing ache and burning pain in the right lumbar area, and the pain is now radiating around to the front where i have a pseudohernia as a result of my spinal fusion. I am taking prescription pain medication, muscle relaxants, using a 4% lidocaine patch and have to periodically use a brace to help with the pain. I do have Hypermobile Ehlers-Danlos Syndrome, and Osteoporosis, and had a previous T11 to S1 fusion, but a screw came loose, my scoliosis has gotten worse so they decided to go a fusion higher up the spine. The day after this last surgery they had to go in a do a revision because a screw came loose again. I did have a recent MRI, but the follow up is not until January 9th, and I am miserable.
I am talking to my local doctor next week, but I think they are going to agree to refer me to Mayo for complex headache problems (refractory migraine and cluster headache) and Hypermobility Spectrum Disorder that affects my neck and therefore, the migraine. The only location I can really get to is Arizona. I know the EDS clinic is in FL. I am trying to figure out if it is worth going to AZ or not as it is a big trip for me, but I really cannot get to FL. Do I try to get seen by just Neurology for the headaches and have them decide if I need to see anyone else? Or is there another specialist I should try to schedule with while I am there for the HSD? It is a big trip, as I said, and I want to be sure I make appropriate appointments and arrangements so that I maximize my experience there. I don't want to find out I should have scheduled with physiatry or some other department but then cannot get in while I am there for Neuro as I didn't schedule ahead of time, if that makes sense.
@sanderson23, neurology in Arizona is excellent. You'll be in good hands. Did you and your doctor decide to submit a referral to Mayo Clinic AZ?
We are still deciding. I am seeing a HA specialist from NY via telehealth, so I do not know at this point if the whole trip will add anything or not. Even the best neurologist may not be able to offer any more help than what I have got.