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34 year old girl with Ledderhose...
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03/04/11 22:54
zobirdie 
03/04/11 22:54
zobirdie 

34 year old girl with Ledderhose...

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

03/04/11 23:16
spanishbuddha 

Administrator

03/04/11 23:16
spanishbuddha 

Administrator

Re: 34 year old girl with Ledderhose...

Since you are already in Germany then I would recommend contacting Professor Seegenschmidt in Hamburg. His email is on this site under Treatment->Radiotherapy->Clinics. If you catch it early and while active you may get a good result, but the younger you are also has higher possibilty of recurrence.

There's lots of other suggestions on the forum from people with LD, mostly good tips and successful treatment stories. Take time to read them and feel encouraged.

There are also some risk factors worth checking out and trying to eliminate if they apply to you.

Best wishes for your successful treatment.

03/04/11 23:58
Larry 
03/04/11 23:58
Larry 
Re: 34 year old girl with Ledderhose...

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

03/05/11 04:07
Cyclist 
03/05/11 04:07
Cyclist 

Re: 34 year old girl with Ledderhose...

Hi there
Shoes take on a new significance once you get LD

I am anything BUT a girly-girl, but still mourned the loss of my fave designer skate-boarding shoes and gym boots, then went into Crocs and couldn't even wear them anymore because the little lumpy things in them overstimulated the nodules making them sore. Good luck with it!

If you think you're likely to go down the RT treatment route, you need to catch the condition while it's still active because that's when it's the most effective. You've probably got months to look into all your treatment options, but probably a good idea to check your timeline with the Prof in Hamburg early, to get his medical advice.

All the best
Di

03/05/11 18:33
LubaM. 
03/05/11 18:33
LubaM. 
Re: 34 year old girl with Ledderhose...

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

03/25/11 09:16
zobirdie 
03/25/11 09:16
zobirdie 

Re: 34 year old girl with Ledderhose...

Hi All!

Thanks for all the advice! I finally got a copy of the docs report from canada... (suggestions-cortisone and surgical resection!!!) So I have written Dr. S in Hamburg! He isnt too far away from me, so I might as well.

I *REALLY* dont want anyone cutting into my feet.

I am so thankful for all the advice!

Edited 03/25/11 10:03

03/25/11 18:45
Larry 
03/25/11 18:45
Larry 
Re: 34 year old girl with Ledderhose... Good for you getting RT !

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 ...

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