HI,

I was officially diagnosed last week.

I first noticed a small node in my RH palm back in January of this year. Went to my dermatologist hoping a quick cortisone shot would get rid of the bump. He informed me it was something that had to be surgically removed. Brought it up during my GP visit about a month later, he wrote me a referral to a specialist. I noticed an additional (larger/pea size) node a few weeks ago and went to see the specialist. After the first 5mins or so of him letting me know how lucky I came to see him specifically (and not someone who would immediately recommend surgery) he essentially told me just to come back when I could not longer move my fingers. (seems this is a popular "specialist" response from what I have been reading)

I have been doing a bit of research these last few days to see what I could do to better my situation. My first issue is that I do not have insurance and on the low income side of the scale. I also live in the US, Georgia.


Seems at present my only real option is Radio Therapy while things are still new/active in hopes of at least slowing down, and in rare cases reduce, the progression as I have not seem much positive results doing injections.

Doing research, it seems uninsured expense for (2) 5day RT session will run around $10-15k here in the US. The only real alternative I have found is to travel to the UK or Germany for the same (2) 5day sessions for around $1.6k (~800ea.).

Is this my only real option? My anxiety has kicked up a few notches this past week as I have noticed yet another node, up to 5 I think from feeling around spanning from trigger finger, to middle, to the original ring finger base....at least 1 on the palm under each of this fingers (no cords that I can tell).

before I just start nervous rambling I will end this here for now, hoping I can get some advice/help/feedback as I am fairly alone with this, other than my rather arrogant hand specialist which I wish not to return to unless necessary.

Thank you in advance for any help.

Edited 05/10/17 21:23

Ty for the info.

I do not think treatment in the US is going to be an option for me as I do not have insurance and Ger=2000usd is much easier than US=20000usd.

I am hoping to get this done in the early stages in hopes of having a better chance at a positive effect. I will renew my passport tomorrow toward that direction.

Unfortunate to hear that ProfS is on break as he is whom I have the most info on and his office seems very close to the Airport. When I tried Delta I did not see any flights to Essen.

Edited 05/11/17 22:43

Thank you.

I have been trying to contact Dr. Herkstroeter, is this the best way (for a non-German speaking person) Strahlentherapiepraxis@gmail.com ?

Edited 05/14/17 14:55

Thank you for the information.

I just heard back from Dr. Herkströter so to help others that may come later to this post for information I will provide parts of the information he provided in the email.

----------(8 days for initial contact)---------
The radiation of M. Dupuytren and M. Ledderhose is a standard treatment in Germany, we irradiate 2-5 Patient daily since 15 years.

We only treat active (growing) M. Dupuytren/ M. Ledderhose nodules/tendon or nodules which give any pain. The radiation treatment wouldn’t destroy the nodule or the tendon but it should stop the growing.

We irradiate the Morbus Dupuytren like given in German Guidelines in 2 sessions of radiotherapy. Five times (Monday to Friday)with 3,0 Gy/day up to 15 Gy, re treatment after 8 ( 6-12) weeks. Then again 5 times (Monday to Friday)3,0 Gy/day up to 15 Gy, (at all 30 Gy).

The treatment (5 times radiation , 6-12 week break, 5 times radiation) is paid for each target/radiation-field : 1 field 650€ , 2 fields- 910€, 3 fields- 1170€ 4 fields1430 € at all.
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I also started a form of massage therapy that was developed by Stephen Jeffrey thanks to the information and testimonials provided in an earlier link above. I had my first last week but unfortunately she is away until next week so will resume then before I leave for Frankfort.

My plan thus far is to travel to Dr. Herkströter some time in mid-late June for the first round of treatments, then continue the massage therapy ($65usd/ 1hr session) for 2-3 weekly sessions, then 2 bi-weekly, then 1/month. Then return in Sept. for the final round of treatments. I will most likely continue the monthly massage therapy sessions as well.

My realistic goal/motivation is just basically to delay any surgery for as long as possible.

I am hoping the RT will stop the progression and take away the occasional pain when the nodes get bumped too hard or from too much pressure. If I can only achieve those two hurdles, anything more than that will just be bonus for me. I have read good reports of node softening from both the RT and MT, right now they range from tomato-orange in hardness. To have them all soft enough and pain free that I seldom notice they are there and return to regular activities without worry of enhancing their progression...that would be best case scenario.

spanishbuddha:

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Thanks for the update and info too from Dr. Herkströter. Sounds like a good plan. Please do stay in touch and let us know how it goes; I don't think we've had reports before from a trip to Dr. Herkströter.