I had hand surgery as well. It did the same thing as you described. My pinky originally was slightly bent then the finger that had surgery completely locked up tighter than a drum no movement at 180'.
Then I found a hand surgeon experienced with DD. he tried NA,no luck. Cords had thickened to much plus a lot of scarring from surgery. Then Xiaflex injections opened my pinky and the scar tissue disappeared. It was a long painful road even with Xiaflex it was worth it to have my pinky open to the origional slight curve it origionally had before hand surgery. Hand surgery also left the other fingers in a curvature where before surgery they were just fine. Now I have limited use & grip as the surgery did cause a huge flare with the palm nodes as well. Sooty that you had to go they the disappointment of surgery too.
I have not tried RT as it is usually only for nodes. For now just letting my hand rest. Wear a hand splint at nightly.
Hope it works well for you as this is such a fickle disease.
I'm curious...if your well-regarded hand surgeon tells you that there is nothing whatsoever to do unless and until you have contracture, who do you reach out to? What kind of doctor do you go to for the RT? And, while we are on the subject, why so so many folks go to Germany. What are they doing there that can't be replicated here? This all new to me so I am full of questions. Thanks in advance for all of your patience!
Well I'm not sure about my surgeon as well... refered to as, " WELL Regarded".( perhaps in Germany). After surgery in the US the surgeon saw that all my fingers had contracted at the 8 weeks check up. Made a statement , "You had a flare, well I have done all I could do ", and abruptly spinned around and left the exam room. The hand surgeon said I needed surgery in the first place. I sat there in the exam room dumb founded. He left no referrals or any other treatment advice. Nothing Nada. How surgery on 1 pinky with a slight curvature ended up with my pinky closed to my fist and 3 other fingers now curved and left with larger nodes which I had for over twenty years that never bothered me has been negligence as far as I am concerned.
Later I sought out a specialist in DD. Tried NA. Then Xiaflex finally straightened the pinky. Both hands are effected and I am never doing surgery again knowing what I know now. Night splints only. Giving them a rest at the moment.
Hope you find the info and DD specialist in your area. I think a lot of information from Germany, as DD was a disease orgionally of Northern Europeans.(Or Vikings Disease).There were more case studies in Europe in the early days of this disease. Now it's also believed to be caused from injury. Excessive vibration, etc.... not just hereditary !
why so so many folks go to Germany. What are they doing there that can't be replicated here? --- Radiotherapy is much cheaper in Germany (probably by a factor of 5 - 10) and there is much more experience in Germany with treating DD and LD with radiotherapy. But true, technically the same treatment is available in the USA and experience is building up.
salspecs:I'm curious...if your well-regarded hand surgeon tells you that there is nothing whatsoever to do unless and until you have contracture, who do you reach out to? What kind of doctor do you go to for the RT? And, while we are on the subject, why so so many folks go to Germany. What are they doing there that can't be replicated here? This all new to me so I am full of questions. Thanks in advance for all of your patience!
Cherish and wach.....thank you both for the info and explanations you took the time to write. I have a call in to Dr. Crimaldi in Charlotte and hope I can get in to see him when I am there in two weeks. I want to be proactive and do what I can and then I want to get on with my normal life! I wouldn't be so concerned if this was my left hand, but I am way too old to learn to use a different one.
I hope you are seeing a DD specialist and try to get more than one opinion. My right hand is the worst I agree with you. It's did dulcet to learn how to do things with the lft hand. If you have minor contraction PLEASE leave it alone. I am sorry that this disease has come into your life. It's a pain and it's always a fear to,loose dexterity of our hands.
I just have learned to adjust. Part of life I guess. Hang in there!
Thank you! I have an appointment next week with another hand specialist so we shall see. I am wondering if insurance and Medicare pay for RT if there is no contracture yet? How costly is it?
Whether insurance pays for RT depends on country and insurance company. I have united health care and it's not certain whether or not they will pay. Dr. S in Germany doesn't deal with insurance companies. I'll pay and try to get reimbursed by the insurance company and hope for the best.
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