Forum for Dupuytren's contracture

Re: Radiation treatment at the OU Health & Science in OKC

Christl — Thu, 17 May 2012 17:13:04 +0200

My changes came after the second round of RT.

Christl

Re: Is this possible?

wach — Thu, 17 May 2012 09:36:49 +0200

The cord breaking done by NA or Xiaflex is basically the same but the Dupuytren cord is weakened before being broken mechanically. In your case the cord was broken directly, without being pre-damaged by NA or collagenase. That happens occsionally and there is nothing wrong with it, except that it is more painful.

Wolfgang

Is this possible?

chataboutthat — Thu, 17 May 2012 08:31:11 +0200

I have had Dupuytren's for the past 10 years (I'm 55 now). The ring finger of my right hand is effected. until about 2 years ago, it was taking the classic path with the finger curving toward the palm of my hand.

But two years ago, I was working out with a trainer who didn't know about my hand (I've made other trainers aware of it since i require weights to grip in order to do things like push-ups or any other exercise that requires a flat hand). She threw a boxing bag at me, and caught my hand HARD. It pushed the finger way back, and it almost felt like the tendon just snapped. It ached for months.

Since then, my finger is completely straight, but sunken. It works fine, the pain is gone, but when i hold my hand out straight, you can see that the ring finger sinks lower than the others.

My question is, can a serious blow to your hand stop the progression of the disease? I'm feeling lucky (now that the pain is gone), although I'm a little concerned about the new lumps in my feet :(

Re: Side-effects of radiation

callie — Thu, 17 May 2012 05:40:30 +0200

I just got the rejection of my appeal to my insurance company for RT. They said that they absolutely cannot and will not pay for anything that is "Investigational or experimental". They cite that there have been no valid completed studies that support the use of RT for Dupuytren's.

Re: Side-effects of radiation

flojo — Thu, 17 May 2012 05:31:57 +0200

I admire, appreciate, respect, and honor the many fine doctors, clinics, and hospitals listed on this site. There is not just one doctor, there are many who step out against, or better to say step out ahead of, traditional medicine to provide cutting edge treatment for patients with Dupuytren's and related diseases. All whom have worked with me on my Dupuytren's are very passionate about their work with Dupuytren's and care greatly for their patients. In the medical culture of the USA, I doubt their going against "traditional treatment methods" moves them into the AMA equivalent of the Hall of Fame".

My RT and my NA treatment were successful. For me, any oncologist/radiologist who gains my confidence through their training, studying of this disease, is knowledgeable, and cares can treat my Dupuytren's. If they can pinpoint and radiate a tiny tumor in someone's brain, prostate gland, or do other intricate radiation, they can treat my Dupuytren's. I'm just saying my RT and NA worked so that says my treatment couldn't have been better. Nobody can guarantee 100% effectiveness with this weird disease I don't care who they are.

I'm not taking anything away from any other doctor, I'm just expressing my gratitude for these fine doctors - thank you Dr. T, Dr. Denkler, and Dr. Katerelos!

Re: Radiation treatment at the OU Health & Science in OKC

cureall — Thu, 17 May 2012 04:36:50 +0200

hi
I too had treatment at OU. So far, no results after 2.5 months...I keep hoping to see some change, but nothing yet. Any comments?
thanks,
cureall

Re: My experience with surgical intervention so far

callie — Thu, 17 May 2012 03:29:34 +0200

I had the same situation. I could open the hand fine almost immediately after surgery. Closing into a fist was the situation that took time. Then I started wrapping the fist with a self-adhesive flexible bandage that worked like a rubber band around the fist. I would make it reasonably tight and leave it on for about 10 minutes at a time, several times a day. It made a tremendous difference and I noticed continuous improvement. After about a month, I had full flexibility and it has been great since then.

Re: My experience with surgical intervention so far

mk-ultra — Thu, 17 May 2012 02:35:56 +0200

As threatened... my new extension splint.

5 mins x 5 times a day.

This thing is surprisingly effective. There's an immediately noticeable increase in both extension -- and how "free" the joint feels after each time I wear the splint.

Re: My experience with surgical intervention so far

mk-ultra — Thu, 17 May 2012 02:33:41 +0200

New "toy" #1 for physical therapy:

Elastic band.

5 minutes x 5 times a day

Re: My experience with surgical intervention so far

mk-ultra — Thu, 17 May 2012 02:29:53 +0200

callie:
mk-ultra,

Looks great !! It has been 10 1/2 years since my surgery and a person couldn't tell that I ever had Dupuytren's. Zero contraction and full strength. I stopped wearing a splint at about 2 1/2 months. A key for me was just getting into the habit of flexing often during the day. I only went to therapy twice and that was to get the splint. I also thought that the hand lotion was critical for my recovery. It made it easy to massage the wound.

Glad to hear it!

I'm really encouraged by how fast I'm regaining range-of-motion in both directions. Ironically enough, I'm having more of a challenge closing my finger than opening it. Surgeon says this is because of how hard she had to crank on the joint to get it to open up. Swelling at the knuckle is still pretty significant, even after 1 month. Going to be 1-2 more months before that's mostly cleared up.

Re: Side-effects of radiation

Larry — Wed, 16 May 2012 08:49:34 +0200

GaryBall:
I applaud your decision to go to prof s. / Prof s. Is .....

Fair play to you for making a sound decision...

Very good description of Prof. Seegenschmiedt ! Being a physician myself I would only add the term

... he is a passionate physician for his patienta (not only for this condition!) !

Edited 05/16/12 08:50

Re: My experience with surgical intervention so far

callie — Tue, 15 May 2012 23:53:57 +0200

mk-ultra,

Looks great !! It has been 10 1/2 years since my surgery and a person couldn't tell that I ever had Dupuytren's. Zero contraction and full strength. I stopped wearing a splint at about 2 1/2 months. A key for me was just getting into the habit of flexing often during the day. I only went to therapy twice and that was to get the splint. I also thought that the hand lotion was critical for my recovery. It made it easy to massage the wound.

Re: Side-effects of radiation

switcombe — Tue, 15 May 2012 22:34:08 +0200

GaryBall:
Prof s. Is .....

Hugely experienced in this condition.

That factor was of huge significance to me.

Re: Side-effects of radiation

switcombe — Tue, 15 May 2012 22:21:22 +0200

Maddie:
switcombe:
By the way, is this the address for the clinic in Germany? Which part of that would be the street name?

Strahlenzentrum Hamburg
Langenhorner Chaussee 369
22419 Hamburg

"Langenhorner Chaussee 369" is the street name and number. "Strahlenzentrum Hamburg" means Hamburg Radiation Center or something like that. (Those who speak way better German than the tiny bit I picked up on my two trips, feel free to correct me...)

Maddie

Thanks, Maddie. My mom spoke excellent German - 'tis a pity I didn't pick it up from her. But she never used it except in talking to her mom, who didn't speak English.

Re: My experience with surgical intervention so far

BRIANB — Tue, 15 May 2012 21:59:32 +0200

Yep..same as mine....I find wearing very light cotton gloves underneath makes the splints more comfotable..as I wear the splints all night every night... perspiration etc.

Re: Side-effects of radiation

Maddie — Tue, 15 May 2012 21:04:41 +0200

switcombe:
By the way, is this the address for the clinic in Germany? Which part of that would be the street name?

Strahlenzentrum Hamburg
Langenhorner Chaussee 369
22419 Hamburg

"Langenhorner Chaussee 369" is the street name and number. "Strahlenzentrum Hamburg" means Hamburg Radiation Center or something like that. (Those who speak way better German than the tiny bit I picked up on my two trips, feel free to correct me...)

Maddie

Re: My experience with surgical intervention so far

mk-ultra — Tue, 15 May 2012 17:16:23 +0200

BRIANB:
Nice splint...similar to the ones I use...where did you get it and how much ?

My physical therapist cut it and molded it out of some sort of thermoform plastic. It can be dipped in hot water or exposed to a heat gun to tweak it.

Haven't seen the insurance billing yet -- so can't tell ya what they charged for it.

Re: RT:Some concrete proof!!

Cyclist — Tue, 15 May 2012 14:04:31 +0200

Hey Debrr!!!
Good to hear the nodules have shrunk. How are your feet feeling now? Any better?
Di

debrr:
Hello all,

Just this week I had a 2nd MRI done on my feet. The first one was in 2009 as a baseline. I asked the doc to see if in his opinion RT had done any good. I had one round in La Jolla 2011 and did not go back for a 2nd round yet.

Good news!!! He said the nodules were definitely smaller!! I wish I had thought to ask for percentages, but this is still good, good news!

Now I only hope that my insurance will still cover round 2 for me. I have heard they have discontinued coverage on hands I now have evidence of dupuytrens in my left hand.

Hope this helps someone in their decision on RT.

Re: RT:Some concrete proof!!

Cyclist — Tue, 15 May 2012 14:02:40 +0200

I also had a MRI during my first treatment with Prof S. I'm about to have a follow-up MRI here in Aust and will share the results with you.

Re: My experience with surgical intervention so far

BRIANB — Tue, 15 May 2012 13:46:03 +0200

Nice splint...similar to the ones I use...where did you get it and how much ?