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 (night splint) 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.
Update May
2017: After
undergoing NA with Frank Staub in Heidelberg, I wore a night splint regularly
the first couple of months and occasionally the first year. I wore it only two or three times after that
and by now I haven't worn the splint for probably two years. Today, more than
four years after NA in Heidelberg I have had excellent results. In fact, my hands are probably better than
they were immediately after NA. My left
hand, which had no NA and only slight contracture, is normal. There are still slight nodules, but no
contracture. The right hand is certainly
no worse and seems to me to be better than after NA. All in all, I am quite pleased and the
disease seems to be in remission.
If you have any question, please contact me at mharrel2009
(at) yahoo.com.
Mike