Second Round of Treatment of Radiation for Ledderhose Disease
Hello all,
I had seven sessions of radiation for Ledderhose in both feet last January (2020) At UCSF (University of California, San Francisco). I thought it helped at first but about two months ago I had a really bad flare up that wouldn't go away. I saw Dr. Gottschalk last week and asked (begged) for another round of radiatio. While he reluctantly agreed he added that he did not think it wold help since the first round didn't.
Today I went in to schedule the sessions, but have been feeling better the last few days and wanted to have the treatments while the fibromas were active. Right now they have calmed down. He said performing the treatments while the disease is active is important for the first round of sessions but not necessarily for the second, as he didn't think it would work anyway.
My question is: Has anyone had radiation where it did not work, but then later (say a year) had a second round of treatments where it did work. Unfortunately I am the only patient of Dr. Gottschalk where the radiation did not work, therefore he has not done it a second time. Is anyone has had experience when treatments other than radiation that did work I would appreciate very much hearing about it.
Re: Second Round of Treatment of Radiation for Ledderhose Disease
Hi Gerard
I can't help directly, but at one stage considered the possibility of re-treatment with RT for DD in the hand, but differently after a flare of new nodules within the previously irradiated field.
As an aside, I was not persuaded RT had worked for me, my hands, for 18 months to 2 years after treatment! Thereafter it settled down and went mostly dormant except for the incident in the thread I refer to above.
Re: Second Round of Treatment of Radiation for Ledderhose Disease
RT has about an 80% success rate for LD so it looks like you may be in the 20% category. Have you tried enzyme injections as per Dr. Eddie Davis’ from San Antonio, TX protocol. 15% Verapamil put in the bottom of your feet 3-4 times a day with vigorous rubbing has helped people (including me). Dr. David also suggests some supplements that also help. I’ve started taking 400 mg of Magnesium Oxalate and that seems to help me with pain.
Re: 2nd Round of RT for Ledderhose Disease ?? - VIDEO CONSULTATION POSSIBLE
gerard:Thank you so much for the helpful information. I appreciate it.
With gratitude for all affected patients & medical colleagues who help to advance patient care ...
Dear gerard,
Apparently you are still undergoing a quite difficult time despite being already treated with radiotherapy and counselled by an experienced radiation oncologist which is Dr. Gottschalk. If you like, I would carefully review "your case" which would require to look into the following details of your disease history ...
(1) DESCRIPTION of DISEASE DEVELOPMENT until RECEIVING the 1st RT treatment (Use the attached form Basic Documentation LEDDERHOSE DISEASE))
(2) PHOTOGRAPHIC or GRAPHIC ILLUSTRATION OF YOUR FOOT SOLE with Nodules and cords (sizes ?, hardness ?)
(3) EXACT TREATMENT AREA and DOCUMENATION of RADIOTHERAPY TECHNIQUE plus FRACTIONATION SCHEDULE (try to get your chart from Dr. Gottschalk and let him know that it is for a chart review by Prof, Seegenschmiedt)
(4) DESCRIPTION of DISEASE DEVELOPMENT after RECEIVING the 1st RT treatment (Use the attached form FOLLOW UP)
(5) ALL IMAGING STUDIES (Ultrasound, Magnetic Resonance Imagig) or Biopsy Reports - if ever performed.
If you like I would offer you a SPECIAL VIDEO CONSULTATION where we could perform some tests for both feet and view the sites involved to prepare a decision about further treatent options for you.
Sofar I have performed over 80 VIDEO CONSULTATIONS which give me some confidence in providing help for you ...
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