Kenny,

Your experience reminds me of my first surgery. The doctor who performed it was a orthopedic surgeon, not a HAND surgeon. When I went to him he appeared knowledgable and confident in doing the surgery. I naively agreed to the surgery without asking the right questions. Within 3 months of surgery a cord began to reform in the exact same location of surgery. I too did not have much in the way of PT after surgery.

Upon my second surgery in the same fingers(ring and little finger LH), I had extensive PT for six weeks, night splint and multiple daily excercises. The surgery was done by a hand surgeon who has done over 500 DC procedures, and explained to me the importance of complete removal of the DC diseased tissue and rigerous PT. Since I have an agressive case of this disease, I have recurrence but not in the exact location of the surgery, although proximate to the incision(surgery #2 was done in 1999).

Needless to say, if you decide to have surgery, the advice I would like to share:

1. Locate a good hand surgeon who has done this procedure many times(500 sounded pretty good to me, I nixed one surgeon who claimed to he did ~6 a year).

2. Ask lots of questions(read these forums and Walts page, follow the links, it will help you gain an understanding of DC and the questions you should ask a surgeon)

3. Follow the rigerous PT your doctor prescribes (he will if he is knowledgeable about DC)

4. Consider the alternative solution(s); NA, or collagenase if you can wait the 2++ years until approval.

Jerry,

Could you post the reasons of the people who were disatisfied with NA? I am considering this procedure(as you know for at least a year!) and was suprised by such a high percentage of disatisfaction.

BTW, both you and Sean have made useful contributions to this forum. We all have our opinions and want a better solution to this affliction, so I hope you continue your positive comments and help.

Richard,
What are you talking about? Why the hostile attitude?
1) What is this Gary/Sean stuff?
2) Give me an example of "diatribes without basis".
3) I am not representing anyone except my own experience and the imformation I have read. I have DC in both hands and Ledderhose in both arches. I am certainly not representing anyone in your condition. I feel sorry for you. Obviously it is extremely stressful for you.
4) What arguements? There is an attempt to degrade any comment I make by Jan, TOm or Jerry (and now MaryBeth and Richard) who are either the same person or related because they come out of the woodwork at the same time to support each other. Obviously it must make them feel good so that is fine. Hope it makes you feel better also.
5) Where did you decide that I was "obsessive in opposing anything other than traditional surgery"? I considered NA before having my surgery, but the disease was too far along. I also considered the colleganase treatments but live too far from Stoneybrook or Stanford. I also considered doing nothing. So I had surgery on an 85 degree contraction and was pleasantly surprised that it went so well and the finger and hand is now in perfect condition until recurrence, if it should come.
6) Why are you and MaryBeth "naive"?

Richard:

Would you please provide additional information about the injections you have had, and others you may be contemplating. What was your condition prior to the injections? Did you have nodules, or was it more advanced? Additional details about the circumstances as well as the outcome would be appreciated.

Tom M

Tom M,
Richard has had one injection of Kenalog approx. 1
month ago, he has noticed softening and flattening in the
one nodule that was injected. This injection was performed
by a dermatologist. She had put his history and pictures
out on a dermatology site. Kenalog was the recommendation
that she gave as well as several others as it would not
hurt. Other recommedations from dermo's were, Intralesional
verapamil for keloids, (which he has from past surgeries),
and interferons IL (maybe Kenalog also) for keloids, another
recommended Bleomycin for keloids and hypertrohic scars.
It seems that some of the recommendations for him were in
direct correlation to scar tissue. If you have not had
prior surgeries, as he has, these may not be as applicable
to you, and you may want to just look into Kenalog and
verapamil. His scar tissue is as severe as his DC. Every-
one is at a different stage, I guess. He was also given
a prescription for temovate gel (generic name-clobestal
ointment which we have seen references to frequently) for
a topical ointment/gel solution. It seems to have helped
as well. We are pursuing these options for softening and
flattening, hopefully to reduce pressure from nodules and
scar tissue on nerves and vessels. He has now been turned
down by two out of country physicians who perform NA due
to his scar tissue. If we can resolve the issues of pain
management and release of contracture, through a less in-
vasive surgery than traditional fasciectomy (of which he
has had four) then we feel we have prevailed, as much as is
possible. Best of luck to you, Mary Beth and Richard