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Ledderhose Update
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01/05/2013 22:52
Elin 
01/05/2013 22:52
Elin 
Ledderhose Update

Just a quick update. I had my last round of RT for my feet in November. They were very sore for a few weeks, a little swollen, and very hot!! I'd ice my feet and that helped a lot. I went for my month checkup in December and Dr. T. said the nodules on both of my feet had shrunk. So far, everthing is looking good...keeping my fingers crossed! My feet feel much better. I don't have all that prickly feeling in my feet and my tendons don't seem so tight. I have been hiking and biking again and hopefully all is good. I go back to see Dr. T. in three months and I will be sure to send an update!

01/07/2013 15:56
Christl 
01/07/2013 15:56
Christl 

Re: Ledderhose Update

Elin, I am happy for you. I guess I am not as lucky as you. Seems nothing has changed for me so far. Walking is still a challenge, my nodules are harder than before, my tendon are just as hard as before. I can walk for a short while and than my feet start to ache. I am always looking for the perfect shoe, nothing seems to realy fit. My latest discovery is a "Josef Seibel" comfort shoe, actually they are sandals. I still prefer to be barefoot.
Walking or hiking for long distances would not be possible for me. This whole RT thing is a matter of perfect timing, maybe my timing was not right to do the RT, I wonder now, but I am done. My last RT was done in December, maybe I have to wait a bit longer to see the results, or maybe it is what it is.

RT worked great on my hands, so far the jury is out on my feet.

Wishing you and your feet a Happy New Year.

Christl

01/08/2013 05:05
AmyD 
01/08/2013 05:05
AmyD 
Re: Ledderhose Update

Hi Christi,

I am just going to see someone next week for my feet for the first time based on a referral from the forum. It sounds like you have already tried RT. Just want to commiserate and send you some support. I can hardly believe how bad my feet hurt! I am so sorry that you did not get any relief. Life is a bit more frustrating when your feet hurt all the time.

Amy

01/08/2013 14:59
flojo 
01/08/2013 14:59
flojo 
Re: Ledderhose Update

This thread is helping me with my new Ledderhose disease in one foot. Thank you! I'm an expert on my own Dupuytren's in my hand, but your experiences that you are sharing helps me look at the timeline for getting RT. I think I need to go ahead and do it. Two nodules now and just began causing my foot to hurt after being on them all day.

Any other symptoms that you suggest I watch for? I have noticed some different sensations at night that I didn't have before - feeling momentarily hot is one symptom and my feet have always been known to be and feel cold. There is also a feeling of something going on with that foot. I can't describe it but it mostly just an awareness of something different.

01/13/2013 05:15
LubaM. 
01/13/2013 05:15
LubaM. 
Re: Ledderhose Update

Flora,
For me, the decision to do RT on my foot was an easy one... I knew the disease was active because there was constant itching and burning, the one nodule I had was getting bigger and when a second small one popped up next to it, I knew it was time for RT.

It also coincided with the time I did RT on my left hand with Dr. T... so I was able to do both my left hand and left foot at the same time and save another trip down to La Jolla. I can report that the RT was more successful on my foot. The two nodules are almost gone, itching and burning completely stopped.

Unfortunately my left hand developed new nodules outside the area treated with RT, and the pinkie started bending at the PIP joint, exactly like my right hand pinkie... will send pictures to Dr. Denkler this month...and hope that RT on the left pinkie, followed by splinting will keep the DD controlled better and longer than in my right hand.

01/13/2013 05:17
LubaM. 
01/13/2013 05:17
LubaM. 
Re: Ledderhose Update

My suggestion for all Ledderhose sufferers... wear well padded, soft shoes, preferably good sneakers... most of the time. I wear only Nike Air sneakers, or SAS and ECCO sandals... That works for me.

Edited 01/13/13 07:19

01/15/2013 03:19
Elin 
01/15/2013 03:19
Elin 
Re: Ledderhose Update

Christl,

I'm so sorry to about your feet, but don't give up. My nodules became very hard after the RT and after I would walk they would get swollen and my feet got really hot and sore. I told my husband that I was sure that the RT didn't work. Slowly, the nodules seemed to soften and became a little smaller. That took a little over a month.

I don't want to give the impression that everything is great. I still have the nodules and they are a little smaller, but I still wear tennis shoes whenever possible and after a walk or hike I usually soak my feet in Epsom Salts and massage them because they are still sore. I just hope the RT stopped the progression! I still get the occassional tingling and burning but it's much better.

Dr. T. did say that I could still see results up to 6 months. I have another appointment in April for a recheck and hopefully that will have a good outcome. Please keep me posted and good luck!

01/16/2013 15:42
Christl 
01/16/2013 15:42
Christl 

Re: Ledderhose Update

Thanks Amy and Elin for your encouraging words. I think I just have to have more patience.
Amy good Luck with the RT, I agree, not being able to walk 100 % is a bummer. I used to walk a lot, matter of fact I was very active. My disease was released through a fall of my bike, when I injured my wrist, the rest is history.

Elin I wish you continued healing in your feet. Prof. S told me to walk barefoot as much as possible, also walk on sand and difference surfaces. Also to make sure you use cream on your feet to keep your skin soft. RT can dry it our. Also do normal stretches, the once you use before you run or do any excercise. I will try the epsom salt, sounds good.

Flora good Luck to you, you are an expert in this disease, so you know what to do and Luba Thanks for your positive input, we need that.



Christl

Edited 01/16/13 17:42

01/17/2013 04:15
AmyD 
01/17/2013 04:15
AmyD 
Frustrated in Seattle (and with questions)

So today I saw a Family Practitioner to get a referral for RT. He did confirm that I was his 4th Ledderhose patient and my nodules were bigger than he had seen so I guess I am not as early in this as I thought. He said that 2 out of the 3 people he had seen had a great response to the RT and one received no benefit. He then said that he was not sure if it was worth the 10000 dollar cost to society (what?) for me to try it if the results were so unpredictable. This left me frustrated because my family pays a lot for our insurance coverage and we would personal have to pay the difference of what the insurance coverage doesn't pay for so I am not sure what cost I am pushing on Society. And why does it cost 10000 dollars? Does it REALLY cost 10000 dollars? He did finally say he would give me the referral (after I asked him if we really had to have a political discussion right then) to the Radiation Oncologist but that the Oncologist had not seen that many LH people either. He also said that he thought the collagenase injection was very effective but it is 2000 dollars a shot.

So my questions are:

Am I crazy to go to Drs with so little experience especially in Ledderhose?
Am I too far gone for RT since my nodule have some size? (I think I have cords too but he did not know about that)
How do I find a Ledderhose Dr? The list seems very hand specific.
Is it all really so expensive?
Should I try the collagenase first?
My feet kill me especially barefoot. Walking is miserable and when I am laying down my feet burn--is all this pain a good sign because it means it is active and would respond better to RT?
Is there ever really a good doctors visit? Ok noone has to answer that question...

Edited 01/17/13 06:17

01/17/2013 09:53
Seph 
01/17/2013 09:53
Seph 

Re: Ledderhose Update

AmyD; There is an answer but few Americans want to here it. Dr Manet-Chopin is a rheumatologist not a surgeon. She deals with DD and LD.

From my discussions with her I expect she would perform NA but will also inject cortisone. She understand the disease very well.

You need a weekend in Paris.

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