| My 7 year old has trauma related Plantar fibromatosis - help desperately needed |
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03/04/2011 07:05
ellensmum 
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03/04/2011 07:05
ellensmum
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Re: My 7 year old has trauma related Plantar fibromatosis - help desperately needed
marjorieb:
Zoe,
Have they done an MRI or CT to determine the exact cause of the pain. Maybe you stated that and I missed it. I have done a great deal of work with post-operative scarring, as a therapist. Scar tissue can often be the culprit in causing nerve and/or soft tissue pain. You need to be sure that isn't the case here. If it is, you certainly want to avoid any further surgey.
There are painless therapies that can reduce scar tissue, but would be of no benefit in reducing LD. For instance, pulsed ultrasound; phonophoresis; iontophoresis; massage all reduce scar tissue.
Be sure your MD is certain of what he is dealing with, rather than assuming the pain is from the LD.
Praying for your Ellen to be pain free.
Beth
Thanks beth - they haven't. we are over in the Uk and although we have our national health system when it comes to more involved things - or more complicated problems it is where our health care system falls down unless you have additional insurance which 90% of us don't. Don't get me wrong if it came to Ellen's health i would remortgage the house if i knew treatment would be effective. i think the problem is that for The NHS the cheapest option for ellen is surgery but cheapest isn't i feel the best option for Ellen
Zoe
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03/04/2011 08:54
Cyclist 
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03/04/2011 08:54
Cyclist
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Re: My 7 year old has trauma related Plantar fibromatosis - help desperately needed
ellensmum:
Hi Larry
i completely understand where you are coming from - and as a parent i feel i have an impossible situation to deal with - she has today had to stop doing gym as her foot is hurting and spent most of her lunch time sitting with her foot up because it is hurting as a mum i just want it all to stop and for her to get on with being a normal child again.
| am also finding it so frustrating that there is so little information out there - and from my research so far it seems Ellen is the only child with this as trauma related.
The more i read though a consultant is going to have to go a very long way to persuade my husband and i that it is the right thing to do to operate
Hi there
If your little one is in constant pain, the first thing to avoid is stretching the plantar tendon (the position when standing on toes). I imagine Ellen doing a lot of this in gym. This stretching of the plantar tendon causes nerve pain throughout the foot, especially the balls of the feet. It's actually worse than the nodule pain! You might be able to get her in stiff soled shoes as this will support her plantar tendon when she's playing.
Lots of children have this condition - you are not alone. It's just a matter of finding others as I imagine children aren't as active on forums like this! Maybe you could start a new thread to seek out other parents of young sufferers?
I'm glad to hear you are in the UK, as it's closer to Germany in case you need to seek the Prof's advice over there. Prof Seegenschmiedt speaks excellent English. As I said in my previous message, he has treated a 7 year old with radiation treatment, and, apparently 10 years on there hasn't been a relapse.
Hope it all works out for Ellen and keep in touch to let us all know how you are. You'll find a few of us will be actively following your news and wishing you well through the ether! 
All the best
Di
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03/04/2011 10:05
Thomasnot registered
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03/04/2011 10:05
Thomasnot registered
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Re: My 7 year old has trauma related Plantar fibromatosis - help desperately needed
I am a 21 year old German student, who looks in the internet here and then when triggered by the word "Ledderhose", as I had this condition when I was 12 years old. My initial bump was 3 by 4 centimeter. A local surgeon cutted it out, which lead to a rapid regrowth within 12 weeks to a nodule of 5 by 6 centimeter. It was awful and I was not able to attend sports, which got me a lot of teasing. It was my mother who ran around looking for some advice; we didn't know the term "Ledderhose" at first.
Somehow she got contact with Prof. Seegenschmiedt in Essen (Alfried Krupp Krankenhaus) which was about 140km away. After lot's of discussion with this physician who had a lot of experience with Dupuytren's Disease he made us an appointment with a very reknown plastic surgeon in Bochum, Prof. Steinau. When he saw my foot and the Magnetic Resonance imaging and read the histological report, he immediately stated, that the first operation was a fault to begin with and that he would never treat this condition again as it would have an almost 100% chance to relapse again ....
We went back to Prof. Seegenschmiedt, did a lot of discussion again, but finally decided to give radiation a trial: there were five treatments of - I believe 3 Grey or Krey (?) - I was told that the growth of my foot could be delayed, but good radiation technique could avoid this risk; also, that cancer at my foot could occur at a risk of about 2%, but I had no other choice: the bump was causing pain and I wanted to do sports again ...
To make a long story short: after 3 months the bump went down in size to 4 by 3cm; the pain was almost gone ... after 1 year the bump had a size of 3 by 2 cm and I could do sports again without pain !!! My foot size is equal with shoe size 12 and I am now an enthusiastic basketball player.
Last year I visited Prof. Seegenschmiedt in Hamburg for a 10 and more years examination: nodule size: 2 by 1.5 centimeter and no pain and no functional problems.
Thomas from Koblenz (Germany)
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