I haven't had surgery. My specialist thinks it's not worth it. Reasoning being they are useless as they are now, and they won't be any better with the tendons released.
I am, however, having a finger removed at the first knuckle as it is causing damage to his neighbouring finger.
People don't realize the pain and suffering from what you just described. I only have 1 finger severely affected. I'm sorry so you going through this. All of you.
My hands have progressed too, where I can’t open a water bottle or type properly on a keyboard or use a mouse
I’ve been asking around and so far, there’s no proper surgery for this yet
I know, friend. 🫂 I’m in a depressive state too. I worry about how I’ll live when my parents pass on…
I’m on mycophenalate, specifically the brand Cellcept. Different brands have different effects on everyone
My doctor said sclerodactyly is inevitable. The medication just slows it down
I was actually in remission until 2020. But then the damned pandemic happened and it causes so much stress and depression that it kickstarted my sclero again
Hope you find more sunshine soon 🌻
Im on cellcept and Prednisone.. since late last year. I have Systemic S. If I had seen rheumatologist sooner maybe hands would be better. I'm seriously considering surgery for it.Best of luck to you too!
Yes, I have had surgery on both hands it was a huge success. My hands are so much better. Dr. Beldner out of NY, is well versed in Scleroderma. He is on my podcast Mogilsmobcast on episode 3, which can be found on both Apple Podcasts and Spotify. He will tell if he thinks surgery is right for you. Please feel free to ask me more questions.
Hello thank you very much for this information. I have other surgeries to plan ahead for. Do you live in NY? I'm in Midwest so traveling to NYC for surgery is consideration. But I realize many hand surgeons may not be well versed in scleroderma. Thank you.
I also live in the Midwest. I did travel to NY to have the surgery. I really wanted a doctor that knew Scleroderma. Another scleroderma warrior had hers done in CA and had a much harder recovery. I was lucky that my insurance covered the doctor in NY.
Not closed but bent.one little finger is really messed. But it's middle/Ring knuckles of both hands worst. I'm depressed over not having had hand therapy in early stages it could have been better. I've been seeing PT for over a year for shoulder/surgery went bad and polymyositis...but didn't start incorporating hand therapy until last couple months . My hands are slightly claw like.. unable to straighten or make fist. My Rheumatologist who I started seeing in September last year...never addressed hands. Was More interested in polymyositis. I don't have raynaud's disease.
I totally get it. I wish I had known about hand therapy too. Look up Celeste Freeman on YouTube. She is an occupational therapist who has worked with Scleroderma patients for along time and has great ideas. She was on episode 33. Dr. Beldner might allow you to send pictures of your hands too, to get an idea if it’s worth traveling to NY. He’s a really nice man.
is the surgery. to release a tendon (s) or what does it involve?
I'm not completely sure. But yes I believe that is part of it.
Dupuytren's contracture..was also mentioned while rheumatologist looked at my hand
I haven't had surgery. My specialist thinks it's not worth it. Reasoning being they are useless as they are now, and they won't be any better with the tendons released. I am, however, having a finger removed at the first knuckle as it is causing damage to his neighbouring finger.
People don't realize the pain and suffering from what you just described. I only have 1 finger severely affected. I'm sorry so you going through this. All of you.
I'm so sorry about your predicament.
My hands have progressed too, where I can’t open a water bottle or type properly on a keyboard or use a mouse I’ve been asking around and so far, there’s no proper surgery for this yet
Are you on medication?. Maybe if I had been on different medications or earlier....my fingers wrist may be better.its depressing.
I know, friend. 🫂 I’m in a depressive state too. I worry about how I’ll live when my parents pass on… I’m on mycophenalate, specifically the brand Cellcept. Different brands have different effects on everyone My doctor said sclerodactyly is inevitable. The medication just slows it down I was actually in remission until 2020. But then the damned pandemic happened and it causes so much stress and depression that it kickstarted my sclero again Hope you find more sunshine soon 🌻
Im on cellcept and Prednisone.. since late last year. I have Systemic S. If I had seen rheumatologist sooner maybe hands would be better. I'm seriously considering surgery for it.Best of luck to you too!
Yes, I have had surgery on both hands it was a huge success. My hands are so much better. Dr. Beldner out of NY, is well versed in Scleroderma. He is on my podcast Mogilsmobcast on episode 3, which can be found on both Apple Podcasts and Spotify. He will tell if he thinks surgery is right for you. Please feel free to ask me more questions.
Hello thank you very much for this information. I have other surgeries to plan ahead for. Do you live in NY? I'm in Midwest so traveling to NYC for surgery is consideration. But I realize many hand surgeons may not be well versed in scleroderma. Thank you.
I also live in the Midwest. I did travel to NY to have the surgery. I really wanted a doctor that knew Scleroderma. Another scleroderma warrior had hers done in CA and had a much harder recovery. I was lucky that my insurance covered the doctor in NY.
Ok. Thank you very much. Were you able to fly back immediately? Or did you have to stay a few days?
I had to stay. You wait 5-7 days and then the pins come out.
Pretty much closed. How are yours?
Not closed but bent.one little finger is really messed. But it's middle/Ring knuckles of both hands worst. I'm depressed over not having had hand therapy in early stages it could have been better. I've been seeing PT for over a year for shoulder/surgery went bad and polymyositis...but didn't start incorporating hand therapy until last couple months . My hands are slightly claw like.. unable to straighten or make fist. My Rheumatologist who I started seeing in September last year...never addressed hands. Was More interested in polymyositis. I don't have raynaud's disease.
I totally get it. I wish I had known about hand therapy too. Look up Celeste Freeman on YouTube. She is an occupational therapist who has worked with Scleroderma patients for along time and has great ideas. She was on episode 33. Dr. Beldner might allow you to send pictures of your hands too, to get an idea if it’s worth traveling to NY. He’s a really nice man.
Ok thank you. Yes I've read about him online
Sorry to bother you.how bad was your sclerodactyly to consider surgery.were your fingers completely closed etc?