Chris, thanks so much!!
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Thank you for the feedback. I'm currently spending most of every day researching doctors, making calls, trying to get appointments. So far, the only doctor who was knowledgeable about all of this was the geneticist who diagnosed me with EDS, Hypermobile Type. And she unfortunately doesn't see patients in practice. She said I'm not a good candidate for surgery because I have vascular issues, I bleed a lot. And I can't get steroid shots because I've also developed glaucoma, likely as a result of the Cervical TC's. Several doctors who've seen me either admitted that they knew nothing about TC's and EDS, or acted like they did but clearly didn't. The cardiologist I saw Thursday stated , oh most of these things are just anxiety. Unbelievable! Hadn't even looked at my MRI's and reports. So here I am, losing the ability to walk, and No one is treating me. It's insane. Again, if anyone on this site knows any sort of physician or PT in Southern California, I welcome the info. Otherwise, my search expands outward at a time when traveling is seriously not my greatest strength. And yes, I'm really scared too.
Sherri, Just wondering, do his MRI's happen to note perineural cysts or Tarlov cysts on his spine? I had years of horrible abdominal pain and headaches, and all the doctors said all the tests were normal, and the cysts were nothing, and there was nothing wrong with me. When it got to the point where I was having trouble walking, I started researching these cysts and found that they are not nothing. I have Tarlov Cyst Disorder, affecting my whole spine for many years. This led me to be able to get genetic testing, and revealed that I also have Ehlers Danlos Syndrome. The abdominal pain and headaches and other symptoms are related to both. I'm guessing that many people go undiagnosed because these are considered "rare" diseases. Maybe your husband is one?
While there is no magic cure, there is treatment, and having a name for this is so validating. It's awful, as you know, when people tell you you're fine and you know you truly are not. I wish you both the best.
Hi all of you. I see that these posts are all from 2017 to 2018, but I wondered how all of you are doing, and if you've been able to get any help. I'm sort of new to the world of Tarlov Cysts, although I've had symptoms for many years, but my doctors kept telling me the TC's all along my spine on my MRI's were nothing to be concerned about. So, now that I have trouble walking and standing (in addition to the back pain, migraines, eye and ear problems, etc.) I'm out there on my own struggling to get help. I wonder how you all are doing, and if you have found anything that helps. Best to everyone; appreciate any reply.
Hi there, I too have Tarlov Cysts. Mine are along my entire spine, but are currently worst in the lumbar/sacral region, which is apparently common. Perineural cysts were identified on my MRI's for years, but none of my doctors were familiar with this disorder and ignored my questions . Now, in addition to chronic migraines, etc., I'm having difficulty walking or standing for more than a few minutes. I am still trying to find help for this, and am also trying to get genetic testing. Many people with TCs also have Ehlers-Danlos Disease, and since I meet many of the criteria, I am hoping that having a diagnosis might help me to get help.
I am in Orange County, CA and am desperate for any leads. Thank you for including me in this group and conversation.