Hemophilia Support Group
Hemophilia is the name of any of several hereditary genetic illnesses that impair the body's ability to control bleeding.When a blood vessel is injured, a scab will not form and the vessel can continue to bleed excessively for a very long period of time. The bleeding can be external, if the skin is broken by a scrape, cut or abrasion, or it can be internal, into muscles,...
I am considering an ankle arthoscope, or ankle fusion as a last resort.
I would love to know if anyone has a similar story to tell.
I'm a 34 yr old male in decent shape. "Severe Factor VIII deficiency"
I would love to know if anyone has a similar story to tell.
I'm a 34 yr old male in decent shape. "Severe Factor VIII deficiency"
in 1986 i was told i needed an ankle fusion. Went for second opinion and new doc said to get a brace, an AFO. i got an RX for an ankle orthotic, the same kind built for people with drop foot. They put a cast on lower leg/ankle/foot, and then build a brace to fit it. fits in shoe, and the top, around the calf, straps in place with velcro. the bottom is held in place by shoe laces. no loafers allowed
i barely could walk into brace shop for the final fitting, foot dragging behind me, and great pain. They put on brace, and i literally felt ready to skip out of their shop. No pain at all. Ankle is locked in place, so no joint pain
Been wearing same brace since 1986, and its amazing what a piece of plastic can do
Dont do surgery without checking this out
Right now i'm at the point where walking is painful - I can put up with the pain if i'm just sitting. The only way to avoid pain for me, is to not put weight on it. Movement of the joint is still pretty good - almost as much range of motion as my other ankle.
Does it distribute weight somehow so that you're putting weight on your calf/knee? In that case, I could see how it could help me, but otherwise, a cane is where its at for me at the time being.
Thanks again for the input - I kinda just blew of a brace as a solution, but its good to hear that it worked for someone.
it immobilizes the joint so it can't move
We may have different issues, but my first ortho guy, the one that recommended surgery, didn't know that a brace was an option, and he's probably not the only ortho not versed on non surgical options for hemophiliacs
The doctors, even ones that have performed it on hemophiliacs before, are very slow to make any sort of decicion. I'm not sure if its lazy nurses, receptionists, or hopefully, very careful doctors. I can only hope for the latter.
You would think that the hemophilia clinics would have some sort of results they could share with someone about to undergo a procedure, but every time I ask for case studies, they give me politician answers and blow me off. I am in the midwest however, so its not exactly a very good place to be as far as progressive (new) thinking goes.
Do you still want advice regarding the ankle fusion?
Two words, DO IT.
I've got lots to share with you. I've been there, done it ALL..and i mean ALL. And in the end, I got my L ankle fused and have never regretted it. Pain-free and happy.
Let me know and I'll be glad to share my experiences with you.
Take care,
Joe