Members and friends: Well, I finally got everything ironed out. I am meeting with Dr. Terrence Herman at Oklahoma University's Oncology unit Monday, January10th at which time I am scheduled for RT for one week (seven total treatments) on both of my feet. I am bilateral (have nodules in the same areas on both feet), I am moderate to severe, years of new growth and some are in the progressive stage (getting bigger). Pain = I have taken pain meds because it hurts now just too much, but I have the growths from under my middle toes, down the tendon in the arch, and even a couple in the heel area.

As far as pain goes, the more you do, the more sore my feet are the next few days. I am not in misery, but I cannot do certain things (ladders, running for long distances, anything that requires pivoting and twisting on the nodule area). All of you know exactly what I am talking about. So, here's what I am going to do:

I am going to report on this forum daily from the time I meet with Drs. Herman and Matheson, until I am finished which will be on Friday, January 14th. I will give a detailed description of the treatment, how it is done, how I feel, everything that I would want to know about RT. I will probably be the most advanced case they have treated. My expectations are optimistic, as I know this is experimental and new = it is not surprising that NO ONE, except the Dr's and their assistants know what the hell I am talking about = it took about 8 months and hours of talking with doctors and insurance company to finally agree to pay for this treatment. I will tell you the cost(s) once i know = they can't tell me yet until diagnosed fully.

I have had several surgeries on my hands with a very good hand Dr. in the Dallas area, Dr. Richard Burkett. Thank you Dr. Burkett for jobs well done. Hands are good now. So, check back with this forum every day if you are interested and I will update for those interested. This is cutting edge, but I think Dr. Seegermeister has been doing this in Germany for a few years. If the progression can be stopped, that will be A+ and even some of them disappearing would be even better. I will keep you all updated on this RT procedure. I know what you are going through. It really does feel like hell sometimes, and what makes it worse, is that not even the experts, doctors, or ANYONE can help you. Surgery is just bad = period. If you are reading this? NO NO NO NO NO to surgery. This stuff can come back with a vengeance. RT may stop this re-occurrence, stop the progression of nodules getting larger. Who knows? It is my best chance, IMHO.

So, if you have ANY questions, I'll be reporting everything to you as I find out and if you have any questions, fire away. I will do my best to answer you. I will say this = I don't know the exact cost yet, but I was told that insurance is almost always necessary, unless you use your feet for business and can write off the costs somehow.

Remember = check back = I will be updating a couple of times a day - from the procedure to how I feel to anything I feel that I personally would want to know about this RT. Also, as far as being dangerous? It is so low, that it is considered moot. Really no chance of getting cancer or getting sick from radiation like cancer patients. A low, repeated dose on the areas affected.

Hang in there, I'm excited and I am excited to be able to relay my experience and results to you who suffer = believe me, I understand your pain, sadness and frustration 100%

Talk to you all on Monday!!!!

Steve Crabtree
drumhead on this forum

Good luck Steve!! I will be watching your posts daily as well!! Thanks for taking the time to keep us informed!
Debbie

Day 1 and 2

After meeting with Dr Herman, he determined I would be getting one week of RT treatment on both feet. They draw an area, make a mold for the RT machine, then you come back later in the day for your first dose, which last about 15 seconds. The time consuming part is checking in, meeting Dr, getting area determined. The actual RT is easy, painless, and fast. It works like this: Day One all that I mentioned plus one RT session. Day two is TWO RT doses, six hours apart - this is because of the fluid in the skin that needs to 'regroup' before another round of RT

The third day, one dose, that's it. Day Four, same as Day Two, one dose, then another six hours later, then the the last day, One RT and you are done. No real side effects at all, only keeping your feet mostly dry and avoidance of hot or cold water, only lukewarm after two weeks. The US uses electron beams, low dose, as opposed to Europe which I believe uses X Ray RT.

Dr Herman is doing a study to be published on the results he has compiled and the data suggests much success with this RT method. I was told I would see how it affects me within about two months. Very few have an issues and very few require a second round of RT.

As for the costs, I am still not sure, but my insurance has agreed to pay for their portion. So, once it is determined you have Ledderhose Disease, the decision for RT is made immediately, no waiting. Dr Herman said my case is classic and typical, though moderate. The worst case - the RT would do nothing, which is only about 2% of those treated, then a better result is all progression is stopped and the best case, all is killed and over time, the body dissolves, absorbs the broken down nodules.

I hope this helps, more later,

Drumhead

Thanks for keeping us posted Steve!! Positive thoughts going your way!

Hi Steve,

Thank you for posting about your experience at OU. I will be heading up there too from the Dallas area for treatment in the next few weeks. I have been waiting for an open wound to heal from the surgery that took out my first nodule. I had a second one pop up almost immediately on my foot. Did they do an MRI? I wish you well and hope the treatment is successful for you.

Where are you staying while you are there and is there anything interesting to do up there on the "off" time?

Thanks!

Jane