Hi Jen....Thanks for your input. Compared to 35 yrs. ago, when there was nothing except maybe the Chiari Institute which was a maybe, maybe not help, we've come a long way in providing the mid-part of the country with doctors and, of course, both coasts have them as Well as The Barrow Institute in Phoenix, Dallas (at least at one time, I haven't check on things lately & everyone is nearing retirement) and, of course The Florida Project.
Those people we could trust. Ehler-Danlos we didn't have much for in the way of help, and to be honest, I don't know about your situation. I'd never send anyone to places that were bad for them (based on my feedback andin those years, it was plenty). It wouldn't surprise me if we even came up with a new diagnosis for things today. I think about you, and thank you for bringing this to the public eye, for being on the Ted Talk and for so many other things. Also for the movie you made. It must exhaust you at times.
So no, if someone had what you have, I would suggest that they contact you. Yours is a diagnosis that we think of as new (when all along a lot of people had/have it). I know my limits, and I even tried holitistic approaches to the problem. But I knew there was a problem and tried to keep going to doctors who could help me. I'll assure you of this, thank goodness, there wasn't one person who didn't believe me, but they just didn't know what to do. By the end of this foray I had a lot of "pictures" both with/without contrast and I took them with me everywhere. I have very significant scoliosis, up high where there is no twisting...at least yet! I also have scoliosis and very severe lordosis. I'm the typical patient, but no one knew it then.
This is 35 years ago, no one knew anything.. The day after I came home from my spinal cord surgery, a woman camed Barbara White from a group called American Syringomeylia Alliance Project from a small town in Texas contacted me. It is known as ASAP and operates throughout the world. I was member #3. I had left my name with National Institute of Health had nothing on this disease and had never heard it. I inisisted that they they take my name and address in case anyone had "come a lookin'. It was the same everywhere I went and I'm grateful to Barbara for so very much. As I recall, she went to Stanford for her surgeries, and then had one done in CO and the results weren't great. She was a wonderful woman; a humanitarian. I miss her to this day. (We form a lot of scar tissue around the spinal cord.) She was one of the very earliest patients and a special person.
My obstetrician was the first one to find a pituitary tumor, which turned out to be no big deal as medication kept it under control and it went away years and years later.
Then a young man, a neurologist...a very good one, and I really hit it off. He was a sunny CA boy; now we're both old and retiring. Anyway, he found this when no else had. I had SM, thus the reason for hardly moving. the cape-like pain, burning pain and so many other strange symptoms. I had been to clinic's top doctors', and remember that there were no computers then. Obviously I neded more help. I had a truly painful surgery on the spinal cord (this was in the 70's remember), followed by a neurosurgeon who knew what he was doing at Baylor downtown. He was using the latest techniques and attacked the SM from the brain step...which also needed a repair surgery. Bingo! It was done, and while recover wasn't exactly fun, the fact is that I recovered and lived with the damage that had done beforehand. Very painful damage I may add. Meds have been a problem all these years. Fentanyl wasn't the first drug to have been pulled out from us...as a matter of fact, looking back on it, I think we were pretty poorly treated.
There are excellent hospitals....if one can afford them. It's the exercise programs after surgery that are so important, and that's where the lesser expensive places fall down. Today's there's the computer....it didn't exist then.
Jen, I understand that you were doing well for 5-1/2 mos., and then healing (?) stopped. I don't pretend to know your life and I'm just happy for every step forward that you take. Who wouldn't be? I hope the above explanation helps somewhat. I'm now 73 and have Autoimmune Encephalitis and Congestive Heart Failure, and that's why I can't focus on the spine. Enough is enough, but there will probably be more. After all, I'm not young (73) and my body does have a lot of genetic defects. Yours, Lenora.
