David,

I too have friends that have had surgery and were happy with the results. They all developed DD in their other hands and they looked at me rather skeptically when I suggested RT. Even though they could clearly see that it had worked for me, they preferred to go with what had worked for them in the past. They were also both in their mid 70's to 80's and I think that makes a difference in the perspective of recovery time.

Lori

Several problems with XRT in the USA. Physicians seldom have any experience with palpating the hands of people with Dupuytren's and are going to underestimate the area being affected. XRT machines in the USA are designed primarily for deep radiation of people with cancers that are well below the surface of the skin, unlike Dupuytren's. Doctors in the USA are scared to death of being sued for malpractice and so err on the conservative side in their treatments.

This was evident when I tried to get the second series of XRT done in the USA. Even though I had the documentation of the treatment protocol and hand mappings of the areas treated every radiologist stated that XRT was not a generally recognized treatment for Dupuytren's in the USA and as such if there were any problems the doctor involved would be in serious trouble. There malpractice insurance might not cover them and the doctor might lose access to a hospital and lose their license to practice in the state.

Our bodies can cope with moderate amounts of radiation if we are in good health. That is why the gap of a couple months between two sets of exposures, to give our bodies time to recover and this makes it safer to use a higher level of radiation than if this interval was not there. It is inconvenient to have this gap but it is the more prudent approach and makes it safer (or so it is thought) to use a higher dosage level.

If you are able to do so I would recommend having the treatment managed by Dr. Seegenschmiedt in Germany.

Maddie,

I have to say I am relieved to see someone else here in the same boat as me - recurrence after radiation therapy. We're not easy to find although I definitely don't envy our positions.

I also lost a year to a hand surgeon who told me there was nothing I could do. Then finally did my own research and found RT, then had to wait a while until I moved somewhere closer to a facility.

I had RT in May '10 in Virginia at VCU. My recurrence showed up at Thanksgiving '10, new puckering and tightening/slight increase of contracture. After thinking about this issue for a long time, I called radiation doctors around the country to find out how many times they have retreated anyone...and I didn't really find anyone with real experience. My original doctor she'd give me another full round of 21gy and I visited a radiation oncologist who refused to treat me at all (this is all complicated by my age, only 28),

I decided I had to see someone who is the closest to being an expert on this as possible, and am going to see Dr. Seegenschmiedt. My appointment is on Monday. I do not believe it is worth staying in the US in our case because the doctors are not experienced enough with recurrence, whereas Dr. Seggenschmiedt is.

Dr. S has said he can't guarantee he will treat me again, but if he does, it will be with 5 days of 3gy each. I find out Monday when he exams me if I will go for another course.

I just want to share, as you can emphathize with this, about what a tough place this is to be with this disease. I am trying to focus on the positive and an outcome where Dr. S treats me once more and it stops.....but I can't help but worry about the possibility of facing the next 50 years of my life having to get NA or Xiaflex every year or three or whenever. Ugh! Well Maddie you are in my thoughts and I encourage you to see Dr. S, to me it is the only peace of mind I can have, knowing that I'm seeing the guy who has seen it all and done this for 20 years.

David and Allisun,

I'm not glad you guys are going through this, but at the same time it is reassuring to be hearing from others in the same boat!

I am currently in the process of sending records, photographs, etc to Dr. Seegenschmiedt in Hamburg and Dr. T at Scripps, who did my original treatment, to consult with them remotely. So when I hear back from them I'll decide what to do. My strong inclination, though, is to go to Hamburg, if Dr Seegenschmiedt thinks I might be a viable candidate for retreatment by him. There seems to be a pretty strong consensus that he knows this area better than anyone, and given the situation I'm in, I feel at a point where I need the best expertise I can find.

Allisun, I would love to hear about how your appt. with him goes! Please post an update as soon as you can.

Good luck to both of you and please keep posting... And I'll do the same.

And thanks again to the fabulous creator(s) of this forum! NO ONE I talk to has ever even heard of Dupuytren's (with the somewhat depressing exception of a friend who used to do disability evaluation for the Social Security Administration, and saw people who were applying for disability benefits because they had lost the use of one or both hands). So without this forum, I would have no one to consult with who knows anything about this.

Maddie

That sounds really like GOOD NEWS for you, allisun !

I can confirm that the PROF gave me very good practical advices, how to examine myself to establish whether I would have a regrowth or not; he did a "spreading test" with my hand and fingers to compare both hand swith each other. The best aspect was, that he made two photocopies of both my hands on which all nodules and cords had been marked by himself - one he gave me and the other was kept in the chart ! So he can compare any further change with respect to the initial outline of nodules anfd cords ... simple concept, but great idea.

Did you also get YOUR PHOTOCOPIES ? HOw did he find the EARLY SIGNS in your feet ? Ultrasound, magnetic resonance imaging or just by palpation ?

Edited 02/14/11 17:43