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09/29/2023 05:52
RickinDC 
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09/29/2023 05:52
RickinDC
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Finally real progress, I think!!
Hello, new to this forum but long history with DD. I've been thru Xiaflex (x3) complete Fasciaotomy on dominant RH ring finger, needle procedure on LH Ring, and just now (exactly one month ago) interphalangal capsulotomy on RH ring, middle, and pinky. The final procedure I feel.very good about. Maybe uniquely I've been through most all the local hospitals and a few private practices i.e., MedStar, George Washington, Johns Hopkins (and outside referral to local specialist. Same guy twice with negligible, if any success). Now I just had, I believe real success at the VA!
Fwiw, am.68 yo wm of Dutch descent, life long, bicycle tourer (hand trauma?)
Glad to find this forum, will post more. I have pretty strong feelings about certain experiences that probably shouldn't be publicly posted but happy to answer any questions.
It's been a long struggle and I don't know where to start, or if it's really mostly over.
Edited 09/29/2023 12:37
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09/29/2023 06:45
spanishbuddha  Administrator
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09/29/2023 06:45
spanishbuddha Administrator
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Re: Finally real progress, I think!!
Hi and thanks for sharing
Many patients with severe contracture over extended periods only get partial relief from most treatments due to irreversible changes affecting the finger joints, tendon shortening, pulley injury, ligament stiffening, capsule changes, scarring, nerve damage, etc. It sounds like perhaps you suffered from some of these due to DD and prior treatments, and the latest surgery has helped restore more function? Often we rely on OT/physio/exercise to help restore function but there can be limits. You seem to have found the right doctor to help; can you ask if the doc is willing to provide more detail and share his/her name on our website or forum?
Best wishes SB
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09/29/2023 07:02
RickinDC
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09/29/2023 07:02
RickinDC
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Re: Finally real progress, I think!!
Thanks, I believe that the earlier procedures did ultimately exacerbate the problems.
I'll ask.my most recent surgeon when I see him in about 4 weeks if he doesn't mind my putting his name out. I'm going to volunteer being his shill if he goes onto private practice.
My big takeaway after all these years is: xiaflex might only be effective on non PRP joints and then with dubious long term and expensive results.
And the most important thing may be to find a 'specialist' that doesn't mention (or rely).on PT, and most especially one that doesn't have a business interest in PT. PT for your finger is certainly nothing like a rotator cuff or even a knee. I believe most specialists know that even mild recovery and restoration is a crap shoot and by invoking profit making PT creates a win-win situation for them. For the patient it's a waste of money and time, and they hide behind a failure of PT, at your expense. I duplicate all the movement and can do a far better job on.my own. It's not medical rocket surgery!!
If they mention PT in the consultation, you're setting yourself up to be disappointed. Ask if they have a business interest or get a kick.back from the PT referral.
The brace and your common sense self PT is more important than formal PT.
Edited 09/29/2023 09:16
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10/24/2023 10:13
RickinDC
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10/24/2023 10:13
RickinDC
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Re: Finally real progress, I think!!
Recovering from capsulotomy of three fingers, first knuckle from palm. This is my second surgical procedure after two worthless xiaflex multiple injections. Profound success! Saw Surgeon Dr. Eric Sarkissian, who gave me permission to use his name...He's with the VA so not so accessible for non Vets which is too bad.
The PT program was of my own doing and the VA made me a complicated but effective splint which first had to accommodate the three fingers in wildly different angles initially then segue into one strap as the fingers got equally straightened. The ring finger had to grow about 3/4 of am inch new skin palm side where it essentially fused together.
IWe think another month of the splint will make my fingers almost straight. It's a pleasure reaching into my pocke for the first time in about 9 years (except for a brief period after an earlier unsuccessful fasciectomy.
Probably my last posting here, typing in this forum is so awkward on my I phone so probably my last time I'll use this forum.
Good luck!
Edited 10/24/2023 12:14
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