Mike’s experience with radiotherapy and later NA (PNF),

both in Germany

 

I began to notice lumps in the palms of my hands somewhere around '03, '04.  I self diagnosed on this site and decided to wait for treatment until I had some contracture.   That began to happen in late '09 or early '10.

I decided to try RT since I had only a 10 to 20 degree contracture in my right and and only nodules in the left.  I decided, after research, to go to Dr Seegenschmiedt in Hamburg.  He seemed to be the leading researcher in RT and the cost was incredibly less than having it done here in the US.

I called the University of Oklahoma, closest to me in North Texas, and was quoted a price of $20,000.  When I told them I had no insurance, the price dropped to $10,000.  I don't remember the reason, because I had quit listening by then. 

I contacted Prof. Seegenschmiedt in Hamburg, Germany, by email.  He requested pictures, which I sent.  He agreed I was a candidate for RT.  I had my first visit with Dr Seegenschmiedt in Sept '10.  I was quite pleased with the whole process.  He and the clinic staff speak better English that most Americans.  My appointment was on a Monday morning.  Dr Seegenschmiedt examined my hands, marking the areas that needed treatment.  I came back for the first treatment that afternoon.

The radiation treatment takes about 10 minutes and there is no pain whatsoever.  A shield is made for your hand that exposes only the areas that are to be treated.  A really nice thing was that subsequent treatments did not need an appointment.  You just arrive between 0900 and 1500--the wait was never more than 15 minutes.  It makes planning your day much easier.  On Friday, I met with Dr Seegenschmiedt and was dismissed until a return visit in Jan.

I had no side effects from the treatments.  I chose RT because my right hand was stage 1 and my left had only nodules.  The cost was about 1000 Euros (1,300 $).  Compared to the cost in the US, I could pay for the treatment and the trip and still save a lot of money.

We chose to make a vacation of it and stayed in Hamburg rather than Langenhorn.  Typically suburban, there's not much in Langenhorn.  We wanted to be more in the center of things.  The trip, on U-Bahn (subway) and bus, takes about 40 minutes each way.  Take the U1 to Langenhorn Markt and the 292 bus.  The U-Bahn and the bus are coordinated so the bus is there or arrives in a minute.  One word of caution--don't take the 292 marked "airport".  For some reason, the 292 goes in two directions.  The one you want is marked "Ochsenzoll" . The website is: www.hvv.de.  The Hamburg transit system is wonderful.  Buy a Hamburg Card.  It covers the U-Bahn, all busses, even the water taxis in the port and gives discounts at most museums and other sites.

We rented a car and toured the old DDR [East Germany] and Poland.  The DDR has great roads--of course they have all been reconstructed in the past twenty or so years.  Poland, the roads were not so wonderful.  Poor Poland does not have a rich sibling.

In January on '11, I returned of my second round of treatments which were pretty much like the first.  The cost was 900 Euros this time as the exam and consultation weren't necessary.  We took the train North and spent a week or so, in Lubeck--a truly wonderful Hanseatic city.  It wasn't destroyed in the war--a story within itself.  We will go back to Lubeck.

All went well with my hands until early 2012.  Then, I began to get rapid contraction of the ring finger of my right hand.  It went from a contracture of 10 degrees to one of nearly 30 degrees in three or four months.

I emailed Dr Seegenschmiedt inquiring as to retreatment with RT.  Curiously, I was unable to get a response.  I emailed the clinic, thinking that possibly Dr Seegenschmiedt was no longer with the clinic.  I got an email from the secretary saying that he was indeed still there and if I wanted, I could send her the email and she would be sure he received it.  Never a response.

Small matter, as I had, by this time, decided to try NA.  My contracture had slowed considerably, but I still wanted treatment.  On this site, I learned from John's story, about Dr Frank Staub in Heidelberg. 

We corresponded by email and set up an appointment in Sept 2012.  I arrived at his office in Dossenheim, a 20 min train ride from Heidelberg, on a Monday.  He examined my hand and agreed I was a candidate for NA.  We did it that day--I was out of the office in less than two hours.  The procedure, practically painless, was a piece of cake.  I had watched the videos on the net and the procedure looks pretty brutal.  It's not.  In fact, there was a certain satisfaction in feeling those cords break. He takes the finger and straightens it--and you can feel the cords pop.  I left the office with a nearly straight finger.

The cost was 250 euros.  Be aware, they don't take credit cards or checks [and my check was in euros] --only cash.  There is an ATM downstairs, but be forewarned.

The after effects were nil--no pain, little bruising.  Dr Staub recommended a soap for the hand which I couldn't find, and so ignored it.  I can truthfully say that I never noticed the hand after that day.  It was easier than a dental appointment.  Dr Staub did recommend a glove to be worn at night the first month.  It keeps the finger straight.  I still wear it occasionally if I feel the finger wants to contract.

And now, July '13, I have had no recurrence.   The nodules in my palm have shrunk by 75% and the one in my finger is almost gone.

So what was the effect of RT?  It's difficult to empirically  measure things like this.  My left hand  has had no progression since RT--but it was the least involved.  My right hand was dormant  for a year and then dramatically resumed contracture--only to cease four months later, without treatment.  Would the progression have gone the same way without RT--or would it have been much worse without RT??  That is what makes evaluating these things so difficult.  It is difficult to say what might have been.

My take on things is that I would probably skip the RT and go directly to NA.  The time, cost, and lack of radiation, make NA my choice if I had it to do over. My results from NA have been great, but I am only coming up on my one year anniversary.  If this disease had a constant, it is unpredictability.

If you have any question, please contact me at mharrel2009 (at) yahoo.com.

Mike