Teenager With Dupuytren's...Help? (2 | Dupuytren | Forum for Dupuytren's contracture

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Teenager With Dupuytren's...Help?
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13.09.08 16:20
Jon 
13.09.08 16:20
Jon 
Re: Teenager With Dupuytren's...Help?

Dr Pess and Dr Atik are the 2 specialists that do NA within their practice. The other physician(s) do only hand surgery. I would make an appointment with Dr Pess to get his opinion; although he may not give an opinion due to Dr. Decker being a member of the practice. The beauty of the medical system is if a physician is not providing services (includes bed side manner) a new physician can be consulted. Good luck!

14.09.08 02:59
jimh 
14.09.08 02:59
jimh 
Re: Teenager With Dupuytren's...Help?

I've been dealing with this for about 15 years, have had 2 surgeries, and here's my brief bit of advice.

First, your hand looks and feels real bad 3 weeks after surgery. A lot of the stiffness is due to swelling which actually takes months to subside. Yes, it is important to get started with physical therapy but don't be too panicked by the 3-week delay, just start in and do everything they tell you - and do it 110%.

Second, your long term picture might be pretty good because better treatments are on the way, and you have time to wait. Start reading about Xiaflex (a new injectable enzyme treatment about to hit the market) - it's going to be the 'big hammer' against Dupuytren's. And of course be learning about needle aponevrotomy too. Get this surgery behind you, keep working that hand and try to avoid future surgeries, the benefits of which are sometimes oversold. If possible, keep buying time for the newer treatments to develop further.

Dupuytren's can be a nuisance but no more than that, in the grand scheme of things - it's just one more thing to deal with. It's progress is unpredictable and it often stands still for years.


14.09.08 22:21
allhailthesporks 
14.09.08 22:21
allhailthesporks 

Re: Teenager With Dupuytren's...Help?

Thank you for your advice. That's pretty much what my physical therapist told me.

On a different note, while I was stretching my thumb last night (as Dr. Schwall and Dr. Decker told me to do), the 'surgery site' (for lack of a better term) cracked, badly. It was oozing all over the place. Most of that eventually subsided, but now I basically have a piece of dead skin hanging over and open wound (more like a small hole) in my hand. I called Dr. Decker, and he told me to rinse with peroxide and re-bandage until I can see him (hopefully, tomorrow). The problem is- now, I can barely move my thumb at all because, besides the fact that it's painful, it tends to start oozing/bleeding again when I do. This is so frustrating because I JUST started physical therapy, and now I'm back to gauze and bandages and pain and very restricted movement. UGH!

14.09.08 23:28
jim h

not registered

14.09.08 23:28
jim h

not registered

Re: Teenager With Dupuytren's...Help?

There will be setbacks, it's not a straight road. The thing to remember is that the healing - the closing of the incision - proceeds from the bottom up. In the old days they'd stitch the incisions closed and people wouldn't have alarming experiences like what just happened to you - but they'd end up with more scarring. They found that leaving the wound open causes it to heal better in the long run.

All you can do is wait until it stops leaking, then start in again with the exercises. In my experience there seems to be a sort of tension between the MDs and the PTs. The MD is more conservative and will say 'stop whatever you're doing' because that makes the problem go away - for him anyway. The PT, I think, is often more outcome-oriented and knows that you have to push the envelope a bit to regain motion. The surgeon does his thing and if you just heal cleanly and don't get an infection, he's in the clear. The PT wants to see range of motion restored. I trust experienced PTs because they follow the cases all the way through and know what really works.

15.09.08 08:07
Wolfgang

not registered

15.09.08 08:07
Wolfgang

not registered

PT after surgery

Some consider PT after surgery extremely important, others believe it's not curcial and a well operated finger will recover anyway. I don't what the truth is but I would certainly be careful with exercising and not overdue it. I would start PT after wound healing is completed and I would prefer a regular but soft exercise, not trying to push limits. I would think the main goal is to improve blood flow to reduce swelling and keep the joints in motion to avoid stiffening. Eventually you can stretch and try making a fist. It took me about 3 months before I could make a fist again and 6 months until swelling was completely gone. I liked bathing in warm water, only again after the skin healed completely. Afre wounds are healed I would also consider wearing a night splint for several months. I didn't do that after my own surgery and it worked our OK but wearing it is probably good prevention.

Wolfgang

15.09.08 16:53
jim h

not registered

15.09.08 16:53
jim h

not registered

Re: Teenager With Dupuytren's...Help?

My surgeon, and the physical therapy group associated with his practice, had me begin PT within a couple of weeks, long before the wound was healed. The exercises and PT sessions went on for months. My recover was excellent. Some drainage is expected and I was directed to change the dressing daily.

15.09.08 22:26
allhailthesporks 
15.09.08 22:26
allhailthesporks 

Re: Teenager With Dupuytren's...Help?

I saw Dr. Decker today, and he told me that cracks and drainage are to be expected. In fact, he wanted all that skin to start coming off. I have to dress the wound daily again, but apparently I can go on with my PT. He also said that the hard lumps I'm feeling in and around the wound are probably scar tissue, which will hopefully be cleared up in PT. Yay for some good news.

Thanks, again, for all your help.

04.10.08 15:58
JAnnRunner 
04.10.08 15:58
JAnnRunner 
Re: Teenager With Dupuytren's...Help?

Jess,
I know how confusing and over-whelming DC can be at a youg age.. I started showing signs as yearly as I can remember 8 or so. I had pits on the inside of my fingers and one on my big toe. No doctor ever said or noticed them nor did I give a 2nd thought , my teenage years I began to see a soft lump on the inside of my index finger. All was fine until I was 25 and the a new lump formed on my pip and that one caused pain and small contraction around the middle joint. Went to many doctors with all different results for 2 years until I asked to be seen by a hand surgeon. My hand surgeon knew as soon as he saw it what it was. He gave me a lot of literature to take home and told me to research on the internet and return to see him. Looking back he did what was best, was so overwhelming all the information on a disease I had never heard of before. Having at such a young age non of the info was pointing in a good resolution for me!! I was an extremley healthy and athletic individule trying to grasp how that could have happened to me with no family history. I had 2 surgeries in my 20's to repair the same pip joint. both failed and returned to the same contractor as before the surgery with-in months. No one person will have the same results as another with this and some doctors do not want to answer those questions of yours because there is no right answer and they do not want to be wrong.. I am now 40 and only have the contracture in the pip joint and my index and toe have yet to contract. Having DC in the fingers is the hardest to treat because NA is not an option and surgery can be tricky but there is hope!! Having DC has caused me to look at life differently and what I put into my body.. I eat healthy ( lots of dark greens, no dairy, and little meat, stay away from processed foods) I exercise every day and stretch every day and have gained strength in my effected hand with strenght training and this works for me. I am in better shape than I have ever been!! This disease does not define me or limit what I do and you can have a healthy life . I wish you luck with your recovery and you seem like a intelligent 17 year old with a bright future ahead of them.. J Ann

04.10.08 23:14
allhailthesporks 
04.10.08 23:14
allhailthesporks 

Re: Teenager With Dupuytren's...Help?

Thank you so much for your support.

A little update: It has now been almost a month and a half since my surgery. The contracture in my thumb had been getting better, but then a cord popped up and it's getting worse again. My PT wants me to keep stretching it, but it's quite painful to do so with the cord now there. Deterioration is happening rather rapidly. I can't believe it because I thought this disease was supposed to progress fairly slowly. I haven't seen my surgeon in two weeks, but I assume that he'll tell me I'm going to need more surgery.

05.10.08 02:24
jimh 
05.10.08 02:24
jimh 
Re: Teenager With Dupuytren's...Help?

Cords and contractures don't appear overnight, even for those of us with aggressive DC. I'd go with the advice of your PT - they bring the valuable perspective that comes from having seen many cases.

My experience, which apparently has been shared by many, is that Dupuytren's is unpredictable and tends to make a "run" for a while, then go dormant for long periods of time. So my advice is to focus on recovering from your recent surgery as well as you can, with respect to range of motion, and not think about more surgery yet. It may never be necessary.

Remember that better treatments are coming. The "Xiaflex" enzyme being tested by Auxilium is our best bet, especially for well-defined cords, and it should make many if not most surgeries unnecessary. I've have a nasty contracture climbing up my left thumb for a cuple of years now, which is causing me some annoyance, but I'm not thinking about surgery, I'm waiting for Xiaflex.

Hang in there. Things always look bad in the first months after a surgery.

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