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Looking for feedback
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05/02/2010 03:37
TangoGirl 
05/02/2010 03:37
TangoGirl 
Looking for feedback

I am an amatuer Ballroom dancer in my early 50's who works for an engineering and construction company. I dance 10-15 hours per week, and am in good physical shape. Last April, I deleloped a small but painful nodule in my left arch. My podiatrist put me on oral steroids for 5 days and it seemed to work well. My husband and I took a two week trip to Paris the following month (to celebrate his recovery from Stage 4 cancer) and did nothing but walk or take the Metro. I was fine. In mid-March this year, I woke up one morning to a large swollen area in the same location (left arch) and a nodule in the same place. I again went to the podiatrist, who gave me a cortisone injection. I got some relief for about 5 days and then I was back to where I started. The doc wanted to talk surgery, so I went to an orthopaedic surgeon who came highly recommended (he treats the US Astronauts's feet.) He put me in an air cast for a month. I've been back several times, most recently on Friday, where he extended the air cast treatment for another 6 weeks. At it's worst, the area was moderatly swollen and inflamed and quite painful. The inflamation and swelling are somewhat better, but now I've noticed what appear to be an additional 3-5 nodules and my great toe has started trying to overlap the adjacent toe (don't know if that's related.) Last week, the skin in my arch started cracking and sloughing off in large, nasty pieces. My doctor is baffled. I have no family history that I'm aware of, and don't meet any of the other pre-dispositions, except I do smoke a half pack a day (nasty) and undoubtedly have old sports injuries to my plantar fascia from gymnastics as a teen and years of running and now dancing. I'm sorry to ramble on, but wanted to get it all out. Does anyone else out there have experience with similar problems? I could use some feedback... Thanks!

05/02/2010 15:05
flojo 
05/02/2010 15:05
flojo 
Re: Looking for feedback

Read Luba's posts about RT for her Ledderhose, but she'll probably post a response to your post describing her experience. RT was successful for her.

05/02/2010 16:00
LubaM. 
05/02/2010 16:00
LubaM. 
Re: Looking for feedback

TangoGirl,
I'm sorry to hear about your problems with Ledderhose. My experience is somewhat similar, as far as swelling and nodules. For years, I've had two hard, marble size nodules on my left arch. Fortunately it never bothered me for walking because I have a high arch. In addition to nodules I have plantar fasciitis and heel spurs in the same foot, which is a chronic recurring disease. Through the years, I've had cortisone shots in my heel for the plantar fasciitis and the podiatrist tried cortisone in my nodules. My plantar fasciitis is in remission at the moment.

Last November, because I opted to do Radiation therapy for my Dupuytrens in my left hand, I also had radiation on my left foot, with Dr. Tripuraneni at Scripps in LaJolla, CA. The radiation was very successful. The nodules in my foot are still there, but they are totally flat, almost gone. Also the constant itching and burning (symptoms of active disease) have stopped.

I hope you consider RT for your Ledderhose. From my experience, I know that cortisone is just a bandaid, it gives temporary relief.... and surgery, especially on your feet is extremely painful and has a lengthy recovery. I have not read any favorable posts to surgery for Ledderhose.

05/02/2010 16:22
TangoGirl 
05/02/2010 16:22
TangoGirl 
Re: Looking for feedback

Thanks to both of you for your input. My doctor wants to take a watch and wait approach, which I prefer to the other doc wanting to jump to the surgery. I have read about the other treatment options, RT and 5FU, as well as the others. I am blessed with a high pain threshold (i.e.: root canal with nothing for pain) so when I hurt this much (today about a 5 on a 1-10 scale) something's not right. My arch is very tender today and it burns off and on. I had initially mentioned RT to my Ortho and he didn't seem interested. I may contact my husband's primary doc at MD Anderson to see if they treat any of "us" with RT. On the up side, I have pursued my dancing as much as possible and Friday night was the only one at my studio to perform 2 routines (foxtrot and tango) in the "Spring Spotlight." I walked in with my aircast on, changed shoes, performed and then put the aircast back on. I may have to make some compensations here and there, but will not let this run my life. I feel like a whiner, which I am not accustomed to doing. This watch and wait thing is understandable, but my pain level has doubled in the last 6 weeks and the affected area has gotten a little larger with more nodules. Patience was never one of my virtues! While I am sorry there are so many others out there, it is good to know I am not the only one with this condition. Thanks again and feel free to continue to give me feedback and suggestions.

05/02/2010 17:28
LubaM. 
05/02/2010 17:28
LubaM. 
Re: Looking for feedback

My suggestion would be: when you're done with your air cast treatment, find a radiation oncologist Dr. who is familiar with treating Ledderhose with RT, and have a consultation appointment to discuss your options. If you are seeing an increase in nodules and have active disease with itching and burning, why not treat it before it gets worst? RT is non-invasive and is certainly worth a try. There are many positive results posted on this forum.....All the surgeons (I've seen four) I saw were against RT as well as NA. Surgery is definitely not an option, for me....

05/02/2010 21:22
TangoGirl 
05/02/2010 21:22
TangoGirl 
Re: Looking for feedback

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

Luba, thanks for the advice. I believe my husband has a routine check up at MD Anderson in the next two weeks, so I will ask his doctors there for a referral on RT. I really appreciate you taking the time to share your experience and advice with me. I know I am being impatient, but I operate much better with a game plan and goals. Thanks again and I'll keep you posted. By the way, my doc had suggested I try MBT shoes, which have the rocker bottom. I tried on 2 pairs today and walked about 10 ft in one when I broke out in a sweat from the pain. I ended up getting a pair of very lightweight flexible Nike running shoes, which will at least give me an option for around the house and a break from the air cast. I realize everyone's situation is slightly different, but wanted to share my MBT experience.

Regards,
TG

Edited 05/03/10 00:22

05/02/2010 23:42
Jill20 
05/02/2010 23:42
Jill20 
Re: Looking for feedback

Hi

I have Dups and just realized my cramps that I have had for several years in my feet must be Ledderhose. When my feet curl in the middle of the night I have a foot messager with heat and different vibrations that really helps. I get up and sit in a chair and turn that on and the heat and it really helps to the point that the cramps stop. Sometimes my whole leg is effected from my foot all the way up to my thigh.

I hope this helps someone.

05/02/2010 23:52
TangoGirl 
05/02/2010 23:52
TangoGirl 
Re: Looking for feedback

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

Jill,

I'm new to Ledderhose, and have been learning so much from this site and the wonderful people in the forum. I also have cramps in my affected foot. Some years ago, I developed RLS in the same leg and take 1mg of Klonapin before bed each night. I think this has helped with the new cramps, which are completely different from RLS. Many years ago, when I was pregnant with our daughter, I also got "charlie horses" in my leg and would wake my husband up to massage them away. When I encountered my first round of cramps recently, I woke him up to massage my calf and foot. The next morning, he asked quite casually if I was pregnant again! I'm glad you've found something to help your cramps. Potassium is also supposed to help regular leg cramps. I have friends who eat an orange or bannana every night to ward off leg cramps. Hang in there!

Regards,
TG

05/03/2010 01:03
LubaM. 
05/03/2010 01:03
LubaM. 
Re: Looking for feedback

TG,

I use Nike Air sneakers 90% of the time. Forgot to mention, years ago my podiatrist gave me custom-made orthodics because of my plantar fasciitis problem. I use those as well in my sneakers all the time. When I need to dress up a bit, I only wear good brand shoes and sandals (like SAS, Ecco, Easy Spirit, or anything with alot of padding), they are usually expensive, but my feet are worth it.

05/03/2010 03:05
TangoGirl 
05/03/2010 03:05
TangoGirl 
Re: Looking for feedback

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

Luba, I totally agree on the shoes and always have. I also have orthotics, but right now I just can't stand any shoe for any length of time. I did buy some less expensive shoes for my other foot while in the cast, just to match the "heel" height. I don't need to add back problems to my woes! I took a half a Narco a little while ago and am happy to say the pain is down to a 2 right now. We live in a 3 story townhouse with our bedroom on the 3rd floor, so I'm going to head up now and get some sleep while I can. I get up at 4:30 and am a firm believer that good sleep will help just about anything, or at least keep you at your best ability to handle it. I can't thank you and the others enough for the support and information. I no longer feel so alone and I've resolved not to wait six more weeks. I have another nodule that cropped up since Friday. I'll be on the phone tomorrow, trying to locate a Rad Oncologist here in Houston. With our world class Medical Center and cancer treatments, I hope to find one. I'll keep you updated and please feel free to keep the tips coming.

Good night!
TG

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