Trigger8,

I was diagnosed in 1994 and it was until 2005 when I had my first palmar fasciectomy on my left hand. The symptoms just became unbearable very quickly and the disease is completely unpredictable. I do not know if surgery can be a trigger but it wasn't with me. My left little finger was amputated when the surgery failed. The right hand then exhibited the same problems as the left. Again the disease just seemed to accelerate on it's own.

You will find some doctors are aware of the disease but few or none really know much about it. DMSO may help. I am trying it now on the left hand but the right is too far contracted (ring and little finger) and it seems to help. May be my imagination but it is funny we used to use DMSO on our horses when I was growing up and they loved the stuff.

I am seeking a surgeon to try Dr. Lynn Ketchum's surgery as noted in this thread. We will see!

Good luck.

Brian

Hi Trigger8,

We used DMSO for just about any orthopedic issue on horses such as soreness, edema, sprains, etc. DMSO was discovered at a paper plant in Camas, WA just a few miles from where I live. It also acts as a "skin transfer" that will move most any drug you mix it with into the blood stream by applying it to the skin.

I do have pain and cramping in both hands but it is unpredictabe. No one yet knows the cause of DD but there are lots of theories. I have tried splints on both hands after PF surgery but to no avail. The affected fingers continued to contract until I could not put the splints on any more. Sometimes in the middle of the night I would have to rip off the splint as it hurt too much. Again if a doctor suggests it by all means do it, they will make a custom splint for your hand(s), and the splints and physical therapy have helped people.

On Tuesday I see a Dr. Rick Green who is both a hand and a plastic surgeon. One theory has it that the cause of DD resides in the skin so they do skin grafts over the affected areas after a PF. I am hoping the combination of skills he has will enable him to try this methodology altho the pictures I saw of the procedures graphically depict what looks like a very traumatic surgery. Dr. Lynn Ketchum developed this technique in Kansas if memory serves.

If not I will have two more fingers amputated, this time at the PP joint.

Brian

I just found this HELP ME site for Dupuytrens, so have barely explored the tip of the iceberg. But was just reading through some of the messages on this forum. I developed Dupuytrens after I had a broken wrist, surgery, and had my arm in a cast for months. That triggered it evidently..... however my brother remembers that my father had it also. Mine involved my little finger of my dominant right hand. There's a cord, a nodule at the base of my little finger, and now the hand joint for this finger is distended. My orthopedic doctor has now said that I need treatment. Her office was supposed to check with my insurance co. to see if they would cover Xylaflex. I didn't hear from them for months. Finally I called them. The insurance company was dragging their feet on paying, so they signed me up for surgery. I was scheduled for Tuesday, July 2. I went for my pre surgery appointment and got cold feet. I told my doctor I wasn't ready. She was not happy. I decided I needed to get another opinion. I'm not even totally sure she's the right surgeon for this very tricky surgery. I love my right hand. I can function perfectly with no pain right now. I am typing beautifully. I can even do yoga. My four fingers work GREAT! Surgery will ruin my summer! So I found this site. Made an appointment with a hand specialist in Montana who treated a friend, who has DD. And I am going to explore this site to see if I can enlighten myself before I go under the knife. Thanks for being here!!!

TetonRose,

I agree with LubaM, explore all options. Study the Mayo Clinic website for DD info. Go to the Xiaflex website. The company has an entire division devoted to helping educate insurance companies and handle appeals for denied coverage. I had surgeries beginning in 2005 before there was Xiaflex and in 2010 my surgeon, when the other hand became involved, talked me out of Xiaflex and back into surgery. Palmar fasciectomies (PF) failed to help either hand and are more expensive than Xiaflex.

Insurance companies play on inexperience and use bureaucratic style to deny and delay coverage but fortunately I have been involved in both government and the health care industry so my appeal of denied coverage for Xiaflex was successful. Unfortunately, while there is some improvement after Xiaflex, surgeries create scar tissue that lessens the efficacy of Xiaflex, NA or any other treatment. Plus it took many months for the appeal while the disease continued to progress. If I lived in Canada, Sweden, France or many other countries the problem would have been resolved years ago. One excuse insurance companies use is Xiaflex is "experimental". By definition when the FDA approves a drug and treatment, it is no longer experimental. Xiaflex will send a copy of the approval and clinical trial data to support your appeal.

You are smart to get another opinion. In my opinion, surgery should be a last resort but if you do it look at Dr. Lynn Ketchum's procedure involving both PF and skin grafts. You need a very experience surgeon to do this and I am seeing a hand and plastic surgeon Tuesday.

I am tempted to post my appeal here so other people can use the info but I suppose I should think about it. Good luck!

TetonRose:

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. However in Sept. I'll be turning 65 and will be dropped by my school plan and will enter the big, bad, unknown world of MEDICARE. Who knows what will be covered and what won't? I have so much research ahead. Need to find out what my current policy covers (hand therapy) and what Medicare would cover, and what secondary policy would be the best. So much to do, so little time until September.