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update on my treatment for Ledderhose, etc
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03/30/07 05:31
drumhead 

update on my treatment for Ledderhose, etc

Well, I've been taking LYRICA for the pain in both my feet from many nodules from Ledderhosen disease. I've had several hand surgeries, the latest returned within a year on the pointer finger on my right hand, not too much trouble, but I do know I'll have to have it worked on AGAIN. Damn. Rate of recurrence for me is high.

My feet? NO WAY I will have ANY cutting on my feet, even though they are in bad shape. But, I wear good shoes, try to wear thick thorlo socks, and I try to not POUND my feet with workouts. However, this crap never goes away, as I was reminded of a couple of days ago when I had to fix my garage door opener and had to stand on a metal ladder. OUCH. Feet still sore from the pressure of the rungs.

Why the post? Well, I've been given a drug to help with the pain of my feet, and so far, it seems to be doing very well. I DO NOT take more than two per day, one in the morning and one at night. So far, so good. But, I have had three more nodules appear on the feet (sucks), but as far as intense pain goes, this medication HAS helped somewhat.

LYRICA is the med. yeah, yeah, I know, supposedly, it's made for other things, BUT, it is a controlled substance (meaning, it is a med that actually DOES SOMETHING, you know), can't have effective medication over-the-counter because a bunch of nimrods will ABUSE any and everything that is effective, so we have a pile of TYLENOL and IBUPROFEN to choose from that is 1. not too effective and 2. ruins your liver, kidneys and God knows what else. Screw all that.

This LYRICA stuff seems to work for me with NO side effects.

Bottom line is this = if you let someone, anyone, no matter how GREAT they are CUT on those thousands of nerves in your feet ? Not only will you be sorry, but if you understand ANYTHING about statistics (rate of recurrence), chances are you will be more F'ed UP if you have this done, than if you tried to CONTROL the pain. This is, until a PROVEN procedure is found for this rare, painful, crappy disease.

I went to the BODY WORKS exhibit in Dallas, real cadavers, people, showed all the muscles, nerves in the human body. Fantastic. Go to this and check out the feet. THOUSANDS of tiny nerves everywhere.

Figure it out. I did.

I've had this crap for 20 years. Here is the truth. PAIN MANAGEMENT is you ONLY choice right now. The hands? That is a different animal. Success CAN be achieved, tho most of the time, only temporary (again, rate of recurrence).

I speak as an expert on this. I deal with this EVERY SINGLE DAMN DAY.

But, I'm making it. This med, LYRICA, is helping me kick the sharp, intense pain. That is all I can tell you.

Good luck with any of you with this garbage. BTW, since my last post, I have had several people contact me, and unfortunately, they have the beginnings of DC and Ledderhosen. They seem shocked when I give them the lowdown. NO prevention, NO cure.

PAIN MANAGEMENT until a medical breakthrough occurs. That is it.

Best,

DRUMHEAD

04/12/07 20:15
Wendy 
Re: update on my treatment for Ledderhose, etc

Drumhead,
I want to thank you for your feelings and sharing what you have gone through and what you have learned through all of this and what works for you.
I know what you mean about the sharp pains. Re: the ladder episode, I too got on a ladder for a day and helped build our back yard patio cover. MISTAKE! Suffered for many days. Will never do a ladder again, if I can help it!

I have an appointment with my podiatrist tomorrow.
Your right about the ibuprofen. This has been a big concern for me so I am going to ask her about the Lyrica.

I also agree with you re: the nerves on the bottom of our feet. I use to do reflexology and was amazed how this all connected to our body and how many nerve endings are on the bottom of our feet and the palms of our hands.

Thanks again for the heads up.
Wendy

05/12/07 06:02
drumhead 

Re: update on my treatment for Ledderhose, etc

Quote:



Drumhead,
I want to thank you for your feelings and sharing what you have gone through and what you have learned through all of this and what works for you.
I know what you mean about the sharp pains. Re: the ladder episode, I too got on a ladder for a day and helped build our back yard patio cover. MISTAKE! Suffered for many days. Will never do a ladder again, if I can help it!

I have an appointment with my podiatrist tomorrow.
Your right about the ibuprofen. This has been a big concern for me so I am going to ask her about the Lyrica.

I also agree with you re: the nerves on the bottom of our feet. I use to do reflexology and was amazed how this all connected to our body and how many nerve endings are on the bottom of our feet and the palms of our hands.

Thanks again for the heads up.
Wendy



Wendy - any progress on your feet ?

I'm having ANOTHER finger surgery scheduled on Monday. 2nd time on same finger, (rate of recurrence is high with me). Feet are still an issue, but the LYRICA is helping greatly. Saw my MD today, and he is very pleased it is helping me. He really just guessed (as they ALL do with DC & LD). NO ONE knows much about this stuff. Because it won't KILL you, not much is being done to figure it out.

Pain management for the feet = surgery for the fingers/hand. That is where we are. FEET? OFF LIMITS! It is really risky BIG-TIME. Get something that works on pain and especially the nerves. LYRICA seems to help.

Let me know how you are doing.

Best to all of you with OUR ailment(s) and to you Wolfgang.

drumhead

05/13/07 23:59
Wendy 
Re: update on my treatment for Ledderhose, etc

I am sorry I never got back to you. My Mom passed away the day before my appointment so I had to cancel. I will reschedule soon and get back to you.
How did the finger surgery go on the 2nd?

06/13/07 08:25
heybhouse 
Re: update on my treatment for Ledderhose, etc

Has anyone had the radiation therapy? I'm in Germany now and they recommend that here in early stages but are reluctant with me since I'm only 35 and the long term side effects could be much worse than the disease.

03/28/09 01:54
lildeb 
Re: update on my treatment for Ledderhose, etc

I just found your topic..MY topic. 4 yrs ago I had my first pea-sized nodule. This became huge (walnut sized) on my left foot, and smaller but more nodules on my right. First surgery was fine (both feet), but nodules returned fast and BIG. Second surgery was left foot only, and removed nodules that grew so fast that they covered the entire bottom of my mid-foot, and along the inside also. Bummer. They started growing back almost immediately. I talked to several different typed of MD's, but everyone is clueless. I badgered my orthopedic surgeon,and last summer I had radiation on my left foot the day after my third surgery. This was the most painful thing I've ever done! Radiation lasted two weeks, stitches came out a few days later. I DO NOT have regrowth on this foot!!! He removed the plantar fascia also, which makes it imperative to put some insole into all shoes or wear tennis shoes with good soles. My right foot is growing rapidly, and the nodules are again so large that they are running together to form a solid mass. I dread it, but surgery is my only option, and it will be followed immediately with radiation again. I became my own guinea pig because I read everything I could about this. Don't rule out surgery, but don't go at it half-way....it is truly a waste of time.
Remove plantar fascia and do radiation therapy after surgery.
57 year-old female in GREAT health. History of Dup in Mom's family, but no Ledderhose. I do not drink at all, am not diabetic, or epileptic, so I don't no where all that mess comes from in the literature.
Surgery: My last one was very invasive and long (per my MD). Recovery without radiation wasn't long or bad. Recovery with radiation took longer..."blue boot" for two weeks, then ace type wrap for a week, then bandaids over scars for about a week. TENDER feet for a month.
Ask me anything, and I'll tell you anything if you think it will help. I had very bad Ledderhose, not just a few small nodules.

03/29/09 14:33
wach 

Administrator

Re: update on my treatment for Ledderhose, etc

lildeb, I wouldn't recommend radiotherapy immediately after surgery because you would like the foot to heal first. If you wait a couple of weeks after surgery and then start readiotherapy you might recover better.

Wolfgang

03/29/09 17:54
lildeb 
Re: update on my treatment for Ledderhose, etc

You are soooo correct. I knew little to nothing about radiation, but quickly realized that your suggestion would have made a great difference. AFTER my therapy, I told my radiologist he was a monster, and should have waited for my foot to heal first. His response was that radiation stopped the growth quicker this way. MY response was that I could stand a few pea-sized initial nodules if they started to appear, but that the intense pain associated with radiation too soon after surgery was not acceptable. He didn't like thiat, but he's not the one walking around on a foot that feels like a meat cleaver has been used.
Next surgery, I will wait 2 weeks (stitches come out then), and begin radiation. As much a I suffered the firs time, I really don't have any regrowth. The surgery with radiation was August, 2008.
Also, I have a small ndule on my right hand between my thumb and forefinger. It is (and was) not a problem, but I convinced my radiologist to zap it, too. It did shrink a noticeable amount, and is not growing as of yet. I asked him to radiate my right foot, which had only small nodules at the time, but he would not. He said that if surgery was necessary in the future, that the healing process would be in jeopardy. (Makes sense.)
I really wish someone could find the reason for this malady, because I have children that might have to undergo the same surgical process.
I am hypothyroid. I see this mentioned quite a bit, but males don't usually mention this.

03/30/09 12:17
wach 

Administrator

Re: update on my treatment for Ledderhose, etc

You might even not wait 2 weeks but 2 months to complete the healing. Radiaition without nodules doesn't make much sense to me, what would be the target? Also I don't think the future healing process is in jeopardy after radiotherapy. Actually a small nodule is the best target for radiotherapy. You might direct your radiotherapist to the book "Radiotherapy for Non-Malignant Disorders" by Seegenschmiedt and others. It appeared early 2008 and is pretty much up to date.

Wolfgang

Quote:



... Next surgery, I will wait 2 weeks (stitches come out then), and begin radiation. ... I asked him to radiate my right foot, which had only small nodules at the time, but he would not. He said that if surgery was necessary in the future, that the healing process would be in jeopardy. (Makes sense.)
...


04/02/09 02:52
newman 

Re Radiotherapy after Surgery.

Australia Callling, Hi lildeb.
I was very interested in your post of your radiotherapy after surgery. You mention it was administered within a 14 day period after surgery. Do you know the total Gy of radiation administered? You should make a note for any future reference. The treatment you mention is not dissimiliar to that for the treatment of Keloids and Hypertropic Scar removal. The radiation is administered within 24 hours after surgery over a period of 10 to 14 days with low dose radiation total of between 10 -20 Gy. It could be that your oncologist has done you a favour, as the scar tissue will be reduced significantly. I had a keloid develope after a repeat hand surgery on both my thumb and index finger which was very painfull. After RT the raised scar tissue shrunk back to the the level of remaining untreated tissue. You mention that you have to use soft innersoles and soft runners . I did a Google search and a German silicone spray on product might be of help. The product is called Kelo-cote (scar gel or spray. )They say that there is enough for daily application fo 12 weeks. To be applied when the stitches are removed. It is like another layer of skin and is much better than silicone pads. It may be worth investigating. It is availiable world wide. Regards from down under.

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