First the update I promised right before my satellite launched and haven't gotten to until now: I most likely have classical-type Ehlers-Danlos Syndrome. I got the letter right before Christmas, but between my hand surgery, the holiday, and then way too much going on getting ready for launch, I forgot to post it here. The vascular type of EDS was ruled out with the skin biopsy, and the genetic doc believes I have the classical type. While not surprising, this is of course still a relief to know for certain.
Speaking of my hand surgery, I had a follow-up with my surgeon on Monday. My surgery was on December 5th, and while in many ways my hand is much improved, it's still not right. I still have pain on the inside of my hand, right where the pinkie meets the hand. I guess we're attributing this to the volar plate issues that the MRI showed, but it doesn't help when it still hurts. Of course, one thing that makes it hurt more is keeping my hand in a "closed" position (like how it would be when holding a fork or doing cross-stitch or writing long-hand), and the splint my doc had the PT make for me keeps my hand in a mostly-closed position.
The splint is a lumbrical bar splint and is intended to keep my pinkie from catching/locking as I extend it, which is the other problem I still seem to have. It's hard to understand what's making it catch or stall when I extend it, because with passive motion, my finger/hand seems normal, but with active motion, it's definitely there. The catching causes more generalized pain in my 5th MCP joint, which is also contributing to some of my issues.
Anyway, my doc thinks that my best option at this point may be another surgery (that would be number 11 overall and number 4 on the hand for those playing at home). I didn't ask for a lot of details, since I'm not sure it's the right choice for me, but it sounded like he wanted to basically splice the tendon that goes to my pinkie into the tendon that goes into my other fingers. For a lot of reasons, this sounds like a bad idea to me, and he's not wild about it, either. He has referred me to a doc at the Curtis National Hand Center for a second opinion and a second set of eyes.
The last time this type of thing happened was with my ankle. My surgeon thought I needed a sub-talar fusion, and wanted me to go to Baltimore to one of the top surgeons for a second opinion. I went up to that doctor and he recommended the more limiting triple arthrodesis, which I eventually underwent. I really don't know that I'm ready for another surgery right now. I always figured surgery number 11 would be the one to take the hardware out of my ankle but at the same time, I want to be done with one joint before moving onto the next. I guess I'll have to see what the guy at the Hand Center says. *Fingers crossed*
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3 comments:
Sweet jesus woman. You're like the six million dollar woman in repo..... Good luck sorry you are having such problems.
Hi , how you doing now ? can you walk normal , can you run?
i am so scared , i have to do this Triple Arthrodesis operation , i am terrifeid
Hi Rasha,
I'm doing OK now. My triple was just about 5 years ago (1 month shy of 5 years). After the surgery, I spent a bit of time in physical therapy learning how to walk normally again (after of course regaining simple range of motion and strength), but thanks to my physical therapists, I am indeed walking normally and mostly pain free now.
Until recently, I was completely pain-free, though in the last few months, I've had some pain where one of the screws is, I think it needs to come out (I have made an appointment to see my doc in mid-July).
With a triple, you really shouldn't run. You "can", sort of, but because the bones that usually help provide cushioning and stability are fused together, you end up putting a LOT more stress on your leg bones and your knee and hip, not to mention your ankle, so it's really not recommended. To workout, I typically go to the gym and use the elliptical trainer. I would also ride a bike, but my hand has been giving me a lot of problems with that. I also swim on occasion (I don't like the pool at my gym).
Feel free to drop me a note or leave a comment with any questions you may have. I kind of figure that at this point, I'm a pro.
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