Hey All,

I was diagnosed with DD last week by my GP. I have an appt. with Dr. Volker Stieber of Piedmont Radiation Technology a week from tomorrow, Fri 8-17-2018. I am hoping that I am a good candidate for RT, and can afford the treatments.

3 weeks ago I noticed a lump in my palm, under the left middle finger. A week ago I developed a cord and 4 more nodes, so I consulted with my general practitioner, who diagnosed DD. He recommended wait and see. After much googling and researching, I was concerned that I was destined to be unable to work (I work with my hands,) as well as unable to pursue my hobbies (including motorcycle riding, as I would be unable to pull in a clutch.)

Over the weekend I was becoming borderline obsessed with DD and my fate - being unable to support my family being the largest concern.

But then I found this site. I was relieved to find that there is a treatment besides waiting until the symptoms (contracture) are extreme enough to require risky surgery, which by most accounts does not guarantee non-recurrence.

I am especially thankful to those who posted accounts of their treatments and journeys to Germany. My wife is of German ancestry and was excited to get in a bit of medical tourism there. Unfortunately, after hours of pouring over this forum, I have discovered that Prof. Seegenschmiedt no longer practices in Hamburg, and is difficult to contact.

Luckily, however, this website lists lots of other clinics that offer RT for DD, one of which is only an hour and a half from our home. Indications are that Piedmont Radiation Technology is in-network for my Blue Cross insurance, however, I have been hoodwinked by health insurance in general and BCBS in particular, so I will be paying very close attention to the cost issue.

I can't tell you how reassuring it is, not only to find others who have been on this journey, but to have hope that there is a possibility of doing something beyond "wait and see." Procrastination has never worked out well for me, so just knowing that there is an experienced specialist willing to examine my hand with a view towards treatment, has completely changed my attitude and demeanor.

Before I found Dr. Stieber, I was calling all of our local oncology centers, as advised by this forum. I live just outside of the "City of Medicine," Durham, North Carolina. We have several prestigious teaching hospitals here, including Duke, UNC, and Rex. I was unable to get past the gate keepers at any of those institutions. One of them actually transferred me to their Dept. of Infectious Diseases, who were as confused as everyone else I talked to.

I found Dr. Stieber's information at https://www.dupuytren-online.info/radiotherapy_clinics.html

It took me a couple of tries to get through - their hours are not apparently the same as those listed on the website - but this morning I called at 7:32 am and got through. Well, it wasn't really that easy. The recording you get when you call the listed number (336) 718-5095 states: If you are logging in, press 1, if you know your parties extension, press that now.

I tried pressing zero, the typical default for a human, but no luck. I tried pressing 5095, nope "sorry invalid input." So I tried 3367185095 just as a last resort. Boom! "Piedmont Radiation Oncology, this is Angela, can I help you?" wow, awesome.

I was wondering if I could make an appointment with Dr. Stieber? Of course, when would be convenient for you?

I understand he treats patients with Dupuytren's Disease? Oh yes.

All very matter of fact and Angela is very nice and a dear. Complete opposite of my other calls. Most had never heard of Dupuytren's and thought I was crazy.

I then called my GP to request a referral to Dr Stieber, just to make sure that all the t's are crossed in case my insurance company deigns to cover me.

I'll keep you all updated in the hope that it will be informative for someone like me who was upset and obsessing for the first few days after the initial diagnosis, before I found the Dupuytren Society.

Thank you to everyone here, especially those who have shared their experiences with RT in such detail.

Yours,
Jon

That's my classic 1984 Honda CB700SC and I in my profile photo.

By the way, on a personal note, I am 61 years old and have been married for 36 years. We have 4 children, ranging in age from 33 to 21, with two still in college. Thanks for reading!

Edited 08/10/18 13:56

Thank you, I will certainly let you know what Dr. Stieber advises.

I learned by PM this morning that Dr. Seegenschmiedt is practicing again after his long illness, now in Essen. That is indeed excellent news.

Not a believer in RT for Dupuytrens?

Hey Christy,

That is very encouraging, thank you for the information. I would certainly appreciate the contact info for Dr. Seegenschmiedt in Essen.

I anticipate contacting Dr. Seegenschmiedt after my appointment with Dr. Stieber this Friday, depending of course on what Dr. Stieber's advice is.

I still have not gotten a referral for my consultation with Dr. Stieber from my General Practitioner Dr. B yet. I called his office last week as requested, but have been unable to talk to the Dr.

The receptionist knew who I was, in fact asked me if I was the patient who wanted a referral. She explained that they called the number I gave them for Dr. Stieber, but were surprised that the call was answered by an oncology/radiology hospital. She said that is why Dr. B wants to talk to me.

I explained that RT is a common treatment for DT, and that Dr. Stieber is a specialist in treating DT with Radiation, thus my request for a referral. I was transferred to the nurse, and had to explain again.

The nurse was incredulous, and put me on hold for 15 minutes or so. She then came back on to inform me that Dr. B, my GP, was currently seeing another patient and would call me back. Well I'm still waiting for the callback, so I'll call Dr. Stieber's office to see if they have the referral yet, and then I'll call Dr. B's office to see if I can get through to the Dr.

Dr. B has been taking care of me for over 10 years so I'm somewhat surprised by this experience.

I received my new patient packet from Dr. Stieber's office Monday, so I'll be ready to go on Friday.

Thanks again Christy, I can't tell you how much I value your sharing about your treatment and experience in Essen.

Yours,
Jon

Edited 08/15/18 14:24

My wife and I had a very encouraging consultation with Dr. Stieber yesterday.

Dr. Stieber was born in Germany, but educated here and has been practicing in Winston-Salem for the past 20 years. He mostly provides radiation treatments for various forms of cancer, out of the Derrick L Davis Cancer Center. He has, however, treated many cases of DD (I think he said 200 or more) with RT, with a 90% success rate. Success being stopping the progression of the disease.

It was determined that I am a good candidate for RT, considering the aggressiveness of the disease and the early diagnosis. I notice my first node 5 weeks ago, developed a cord 2 weeks later, and have developed another cord just this week. So far I have 4 nodes. I also need that hand for work, and procrastination has never worked out well for me, so my wife and I decided that to wait and see until it's too late for RT was not a good plan.

My brother was diagnosed with DD in his functional hand (he is paralyzed on one side) 6 years ago, and is on the wait and see plan. I do not think he is happy with that, but his disease is thankfully progressing more slowly than mine.

A planning session with the cancer center was scheduled for this coming Wednesday, and I was very happy for the first time since the original diagnosis.

Then we got a call from the financial person at the hospital on our way home. We are out of network for their facility, so our total cost out of pocket (including copay) would be $3200, which I knew and am ok with. Being out of network, however, also means that we need special authorization from Blue Cross for them to cover the treatments at all. Blue Cross will not accept a special authorization call from the hospital or the specialist, so I have to make the call on Monday.

I am not hopeful at this point, since insurance companies in general and Blue Cross in particular are in the business of denying coverage if at all possible.

Plan B would be to go to Essen to see Dr. Seegenschmiedt. Thankfully Christy has reached out to share her experience with her DD RT trip to Essen, which is taking a lot of the stress out of this whole ordeal.

Wow what a roller coaster ride this is turning out to be.

Thanks again, Christy, I really appreciate it.

-Jon
Derrick L Davis Cancer Center Entrance

Lobby

Edited 08/18/18 20:16