I spent 1.5 hours in OT today. Tomorrow will make seven weeks since surgery. My hand is officially worse off than before surgery. I knew it was a risk but I was willing to try. In the last 10 days, my pinky has contracted 20 degrees. My middle finger has contracted 15 degrees. There is nothing more the OT can do to prevent the contracting. At this point, we are just working to get my hand into a fist (long way to go) and work on strength building. I cannot grip anything or hold anything so we've got to get that back.

There is also a whole new cord running from the PIP joint of the middle finger diagonally down to the outside edge of my palm. There is a huge nodule in my palm between the pinky and the index finger. It is a huge mess. I should have left it all alone!!!!! This sucks big time. I don't think I will ever opt for surgery again.

~ dawn

nanshands:

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Dawn,

I'm sure I speak for everyone in saying how much our hearts go out to you! So very, very sorry!

Nan

O Dawn I am so sadden by your news. I am sorry this has happen. I do know how frustrating, frightening & emotional it is when the outcome is not what is hoped for. BUT try not to accept that it will be this way forever! Just as Spanishbuddha has said, even though surgery was not for DC it took 9 months to a year after surgery before there was full use of hand. Perhaps your healing is just going to take a little longer.

If memory serves me correctly a while back you stated that your DC is too for along for RT. I am wondering, perhaps RT can at least 'stop' the progression. When I was in Florida having RT on all 4 limbs I met this lady who travelled from TN for RT. Her hands and foot was pretty for along. Her pinkie had contracted to the point that she could not open it or use it. I could see and feel many cords in her hands and nodules. She said 3 years ago she had N/A. Which helped for 3 years but now it is progressing fast. Doctor Hochman told her the best she could hope for was it could possibly ‘Stop’ the progression. I spoke with her a few weeks back to get update on the treatment. She said it appears RT is actually helping to shrink some of the nodules & the cords. Something the doctor did not think it would do. Perhaps RT might help stop this progression, stop the cord or any new nodule trying to form in its tracks. Just a thought.

I will keep you in my prayers

Btw, how is your husband’s doing? I thought you posted once that he also had this disease also.

Edited 11/13/13 18:40

Jolene, my husband does not have DC. My mother and almost everyone in her extended family has it, though. Definitely a strong genetic tree for DC in my family.

I appreciate your thoughts on RT. At this point it just isn't something we can do. I'm going to be paying off surgery for a while. My husband is needing some medical treatment himself, and we need to get him taken care of. Plus, it appears that he will be laid off work any time now. We just don't have the money to try something like RT, when the potential for real results is not very high. You know?

~ dawn

callie:

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Do you have any feelings about a different course of action you might have taken (20/20 hindsight)? Do you feel that you should have done nothing? I applaud you for giving the different procedures a try. Definitely a tough situation considering the involved genetics.