The good news is that nothing looks torn. The bad news, and what has been causing my pain, is that there is an incredible amount of fluid and inflammation surrounding my tendons.
Normal people would get a shot of steroids to bring this inflammation down, but he said he doesn't trust my tissues because of the genetic disorder, and feels like it would rupture my tendons. So he sat there stumped for a long time on what he wanted to do. He decided I should wear a brace and ice three times a day for three weeks and then come back.
So I love this Dr. I have shadowed him, he wrote me a letter of recommendation for med school. But, for some reason, I ALWAYS cry in front of him. It's disconcerting. My surgeon has never seen me cry. So today I was bound and determined not to cry. Made it through the whole appt. But I hung out a minute to talk to his nurse while she was cleaning the room and she goes "Do you ever look back on how much pain you were in when this first started and how much pain you're in now and wish you'd never done any of this?"
:-( :-(
I couldn't even answer. Because that's what I think about on my bad days.
She didn't mean to make me cry. She was just curious, and because I've spent so much time with these people, we all have a much higher comfort level. Like, the doctor has never told anyone else they are a pain in the ass and their tissue is shit, but he's told me that. So I know she just wanted to know. But my god, she hit the nail on the head
((hugs)) I'm sorry. At least you don't have another surgery to mark on the calendar?
No, and I'm glad. I don't WANT another surgery, but at the same time, surgery is this carrot they dangle with the promise that I might get better. Surgery feels like at least we are doing something. I realize that wanting surgery and not wanting surgery at the same time doesn't make any sense.
((hugs)) I'm sorry. At least you don't have another surgery to mark on the calendar?
No, and I'm glad. I don't WANT another surgery, but at the same time, surgery is this carrot they dangle with the promise that I might get better. Surgery feels like at least we are doing something. I realize that wanting surgery and not wanting surgery at the same time doesn't make any sense.
It makes perfect sense to me. It's good to get those feelings out, anyway. I'm sorry you didn't get better news... there is no way to drain the fluid? One of my bff's came for lunch today and I was telling her that I can't even imagine what it's like to have a permanent disability. Are there any drugs/procedures/grafts/tissue transplants out there in research world for you? Can we grow you some new tendons?
There's no way to get the fluid out with a needle. We need my tendons to stop being so fucking angry. That's actually exactly how he described them. Fucking angry. If I was normal, I could just get a shot of steroids. But I'm not normal and I don't get these options. There are no drugs to treat the genetic disorder. The only treatment is to repair my parts as they break. And not to repair anything with cadaver parts, because I will reject them. So for my bone graft last year, I had to donate my own bone.
I do follow the EDS clinical trials. There is one where they are looking at injecting insulin-like growth factor 1 into tendons to aid in repair. That study is in Denmark though, so I can't participate.
Post by eightangryreindeer on Jun 28, 2012 14:47:11 GMT -5
grrrrrr
Would you reject tissue from a relative who is not a carrier?
(sorry if I'm being annoying)
I just, if they can grow a liver from cells, then conceivably they could grow a tendon from cells and I wonder if a relative's cell donation would take...
I don't have many relatives who aren't carriers. It came from my dad, and my brother and sister have it as well. My mom doesn't have it so I'm not sure if they would harvest one of her tendons. I would guess not- they would prefer to take it from another part of me.
The issue that we're coming across time and again is the scar tissue/inflammation. Because my collagen is so stretchy, my body puts down like (idk, let's just say) 10 layers of it to try to make it as strong as just one layer of your normal scar tissue. So even if we repair the problem, we are left fighting this scar tissue/inflammation battle, and there just aren't good options for fixing it
fixing the problem creates a new problem and on and on amen