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New to this - Ledderhose questions
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03/24/2014 20:49
Gloria 
03/24/2014 20:49
Gloria 
New to this - Ledderhose questions

Hi all,

I got out of bed about 6 weeks ago and it felt like a marble was under my arch. I had been on the treadmill the day before(after about a month away from it) and assumed I'd strained something. The "marble" didn't hurt but was annoying. I started researching and begin to think it could be a plantar fibroma. When it didn't go away after about 3 weeks I went to the orthopedic surgeon. Two more small pea size nodules had developed by then. He confirmed plantar fibromatosis. His suggestions - Dr. Scholls inserts and if it gets so bad I can't stand it - surgery. They did not recommend cortisone(also said insurance wouldn't pay for it) and said the jury is still out on RT. I knew from reading here and on Gary's blog that RT seemed to be my best treatment option. But, I really thought I would see how it goes for awhile before moving ahead with it. Now I'm getting concerned that maybe I should be planning to do this soon. I'm not really in pain, but it's uncomfortable. I have the lump in my arch of course which after awhile of walking just gets sore and kind of achy. The two smaller lumps have grown from a pea to a butter bean. One actually feels like 2 nodules stuck side by side. Sometimes my toes feel like pins and needles are in them and the entire foot can sort of tingle. I've had the itchy/burning sensation but it's mild. Sometimes my feet just ache or plain feel weird but not really bad enough to take an ibuprofen. I've never had problems with my feet. I'm always been active. Walked 3 half marathons, play tennis.

My questions.
1. Is this typical to occur so quickly?
2. Are there 3 definite stages that only occur once(does the active stage come back around?)
3. Do fibromas form only during the active stage?
4. Is it ever too early to have RT?
5. Since it's manageable now, should I try the orthotics route?
6. Does anyone have results (good or bad) from RT at UAB in Birmingham, Dr. Crimaldi in Charlotte(I've read about his treatment on hands) MUSC in Charleston, or the Florida guys.
I've used the search option on these drs, but it's hard to find people who actually follow up on reporting their progress.

I know this has been long and thank you for reading. Any help would be appreciated. I know I'm not the first to feel this is pretty scary stuff. Thanks so much, Gloria

03/25/2014 11:22
Seph 
03/25/2014 11:22
Seph 

Re: New to this - Ledderhose questions

Gloria; LD and DD seems to have periods of rapid growth and activity then it settles down, sometimes for years.

In my case the growth and the itchy crawly feeling go together. No itchy crawly no growth.

I know this is the advice that nobody seems to want to hear but the best option with LD is just ignore it and carry on as normal. For me the aches and weird feelings passed eventually.

The more you interfere with LD the greater the chance it will spread and become more active.

I have been living with this for 45 years. I feel it when it is active and I curse but then it settles down and I have another lump but that's it. Seems to me that we have a great disease. Looks dramatic but doesn't kill us.

03/25/2014 16:20
nanshands 
03/25/2014 16:20
nanshands 
Re: New to this - Ledderhose questions

Hello Gloria,

Your questions.
1. Is this typical to occur so quickly?
2. Are there 3 definite stages that only occur once(does the active stage come back around?)
3. Do fibromas form only during the active stage?
4. Is it ever too early to have RT?
5. Since it's manageable now, should I try the orthotics route?
6. Does anyone have results (good or bad) from RT at UAB in Birmingham, Dr. Crimaldi in Charlotte(I've read about his treatment on hands) MUSC in Charleston, or the Florida guys.
I've used the search option on these drs, but it's hard to find people who actually follow up on reporting their progress.

Question 1: Yes, this disease can appear to move very quickly initially. Reality is that it is a slow moving disease. Your symptoms are very typical of an active stage of the disease. I am also at that stage and have been for about 6 months. Pain, with continued slow growth of fibromas in both feet. I also have DD.

Question 2: My understanding is: Those that have had this disease for awhile would say "yes" to active stages can come and go.

Question 3: Good question. I do not know exactly with LD, "active stage" seems to be defined a lot by pain symptoms. Yet, pain is not always associated with fibromas. Some hurt, some don't. I met a woman recently who has had LD for years without ever experiencing pain. Clearly her fibromas were growing without even her knowledge of an “active stage.”

Question 4: Evidently "yes," since I have pain, small fibromas, and still I am not ready for treatment according to Prof. S in Germany. But, the better question may be, "How successful is RT for LD, and are there other options?" RT for LD mostly treats symptoms. Keep researching the answer to that question and don't be in a hurry! When someone like Steph has lived and dealt with this disease for 45 years without treatment certainly there is no rush. Maybe even no need or value for everyone. I want to add, however, that I feel differently towards early RT for DD where progression of multiple nodules can lead to cord formations and contraction.

Question 5: The problem I am encountering with the orthotic approach is my feet are constantly changing. Seems like orthotics would need to be too, but I am trying to see if they will help me.

Question 6: I have only corresponded with Dr. Crimaldi. I found him to be a very caring doctor. Several people on the Forum have liked him and have been treated by him with RT to their hands. I would suggest you contact him with some questions including his experience in treating LD. In fact I would do that with any doctor you are considering to see what kind of response you receive.

And YES, a lot of people do not follow up on reporting their progress. I think many, like myself, like to wait and see before saying too much. Then time just slips by...

Nan

Edited 03/25/14 18:26

03/26/2014 11:14
Gloria 
03/26/2014 11:14
Gloria 
Re: New to this - Ledderhose questions

Thanks Seph and Nan for your responses. Helps to feel I'm not alone in this. I went to get a pedicure yesterday(may as well look good, right?) Really thinking my my pedicurist would say she sees this a lot. But, no. This was new for her. Why is it that some people say it's a common disease and others say it's rare I wonder.

For now, I'm just watching this and sort of babying my feet. Ordered the Nike Free shoes along with some others that may work well.

Anyone with more answers for me?

Thanks,

Gloria

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