Hi all!

That almost reads like a dating byline.

So.. my story. I am 34, a girly girl who used to live in heels with Ledderhose in both feet. According to my rheumatologist in Canada, this apparently makes me both special and rare. Frankly, I would like to be both less special and less rare. (since I found this group, I actually dont think I am that badly off!) It hurts when I walk, particularly when I get started in the morning. This is a problem as I am a walking tour guide. I also have the beginnings of DD in my hands. (Both parents have DD in their hands. My mother had a disastrous surgery that seems to have caused growth in the other hand. 2 years after, and her post surgical hand is curling again!)

My big nodule is about the size of a large blueberry, while on the other foot, it is presently about the size of a pea. I had one round of cortisone injected into both monsters in December. This was mindblowingly painful, but did appear to shrink both for about 6 weeks and once the immediate pain went away, things were better. Now they are getting worse and my big nodule is definitely on the grow again. Something needs to be done. They even throb when I am at rest.

What do you all suggest. I am presently in Berlin, DE and will be for a while. I understand that there is a brilliant radiologist in Hamburg. Is that the best option? What about cryotherapy? What do you people think? I have read that going ultra low carb might help shrink the tumors. I have read about massage and maybe acupuncture. Its all very confusing.

This is getting me down. I used to wear heels all the time. Now I am Croc woman. (truth be told, the RX silver fox are a godsend- and there are some cuter croc options for those who dont want to look like they just walked off the beach) I feel like I hobble like an 80 year old. I have other pain in my feet and I wonder if it is connected.

Anyway, thanks for listening/reading! I appreciate any advice!
Z

From Berlin to Hamburg its only a 2 hour ride with the train ... spanishbuddha ia right with his advice !

Definitely go for radiation, especially if you are already close to Hamburg and are lucky to have the opportunity to be treated by Professor Seegenschmidt, the top expert in the field of RT.

I had very successful RT for my Ledderhose in November 2009...Two very hard nodules, the size of large marbles are now 90% gone !

Edited 03/05/11 18:35

Another Wonder of this Forum ....

Good conclusion, zobirdie, be aware that even in Germany the RT protocols are implemented quite differently; so its not only a matter of examination and palpation, but also using the right technique to do the radiation therapy. One big advantage in HAMBURG is the fact that they have an exceelnt MRI machine, where I have been examined myself. It gives an excellent imaging and allows a better estimation of the penetration depth for the radiation beam ...

In my case nodules originally as big as 3 cm in depth and 7cm in length had to be detected ... on the actual control image only a 1 cm flat and 3 cm long lesion is left behind which doesn't bother me anymore !

Have a good treatment in HAMBURG with the team of Prof. Seegenschmiedt ...