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Ledderhose Lessons Learnt (from Australia)
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 1 2
07/15/14 14:27
shmiddo 
07/15/14 14:27
shmiddo 
Ledderhose Lessons Learnt (from Australia)

Hi guys,

Just wanted to share some do's and don'ts I've learnt after 2 years with Ledderhose and Dupuytruen.

DO get RT at the first sign of Ledderhose or Dupuytruens. (it is the only known way to stop progression of the disease, and it will progress!)

DON'T travel to Germany just to get RT. (The specialist in Hamburg, Germany is very helpful over email and would probably be happy to talk to your local RT clinic to provide advice on the treatment which is relatively straight forward, published and available to RT therapists all over the world)

DO get gel heel cups for your shoes (custom orthotics are a waste of money, the most important thing is to take the weight off the arch of your foot)

DO get plantar fasciitis compression socks for further arch support (however they do get uncomfortable if you wear them all day, I usually wear them to go jogging)

DO avoid sugar, processed foods, alcohol etc for general health and well being (obviously diet depends on the person but I try to stick to low sugar fruits, gluten free, dairy free and whole foods wherever possible. I can't say whether diet affects the growth of nodules but they are definitely more painful when I don't eat properly or drink a lot of alcohol)

DO try and do a liver cleanse every month to improve your general health (see dr hulda clarks liver cleanse, I can send you my tips for making it more palatable if you're interested)

DON'T get accupuncture for ledderhose or dupuytruens (it's expensive, aggravates the nodules and doesn't solve the underlying cellular problem of collagen overgrowth. I even tried fire needles for a few months which involved inserting red hot needles into the nodules, very painful and no results. The only thing that seemed to provide pain relief was the plantar fasciitis technique which involves needles in the calves to relax the muscles and stop them pulling the plantar fascia so much. After this treatment I had no pain in the nodules but unfortunately it came back the next day. I contacted various accupuncture therapists but none of them could help)

DO stretch you calves daily to take the pressure off your plantar fascia

DO try adding supplements such as fish oil to your diet and rubbing magnesium oil into your skin for general health (other supplements claimed to reduce nodules include bromelain, potassium iodide aka Lugols solution, vitamin E, DMSO, verapamil, L-carnitine, however all these claims are purely anecdotal so it's up to you if you want to try them. I have tried most of these but have given up as I'm yet to find any real evidence of actual results)

DO look into hyaluronidase injections (as mentioned in this forum, there's a doctor in Texas that has been treating ledderhose using these injections for many years and has had good results and no recurrence. I am currently trying to find someone in Australia that would be interested in giving me the treatment, not easy as it involves using the drug off patent. Don't take my word for it though, check the other posts on the forum and the ledderhose.blogspot website)

DON'T get surgery (both surgeons I talked to in Australia, however happy to do the surgery, strongly advised against it. Also, there is no shortage of horror stories on internet forums about recurrence of nodules and various complications. At the end of the day, it's a cellular problem so surgery is not a permanent solution)

DON'T try to link it to another disease or stress about it why it's occurring (my ledderhose appeared after years of long distance running and playing football. I've always been active, eaten healthy and don't have any other medical conditions, the only thing I can put it down to is genetics, foot type and over stress. Unfortunately you don't know what it is until you've got it so there's no one to warn you against it.)

In conclusion, when there are many treatments for a medical problem such as ledderhose or dupuytruens, it usally means that none of them work. If there was a sure thing, we'd all be using it and there would be no need for this forum. At this stage I'm of that belief that if RT can stop the growth of the collagen cells, then the hyaluronidase injections can be used to reduce the collagen growth, and a healthy lifestyle will reduce the risk of future problems.

I hope that helps in some way. Please feel free to add to my comments above or contact me for any more details on my experience so far.

Cheers.

04/23/15 11:31
Rajput1 
04/23/15 11:31
Rajput1 
Re: Ledderhose Lessons Learnt (from Australia)

Thanks for your very comprehensive response.

Any comments concerning cryosurgery? Does anyone know if cryosurgery is available in Australia, and if so, where?

04/24/15 08:11
Cherise 
04/24/15 08:11
Cherise 

Re: Ledderhose Lessons Learnt (from Australia)

Rajput1:
Thanks for your very comprehensive response.

Any comments concerning cryosurgery? Does anyone know if cryosurgery is available in Australia, and if so, where?

In my research I have never heard of it. However it has a use for many other skin issues and I read about various other treatments on line. Nothing remotely mentioned it for Ledderhose.

Look into a foot plastic surgeon who is experienced with Xiaflex injections. See Xiaflex online. It's a bio drug a enzyme that eats thru the collagen that causes the tendons to curl. Xiaflex has a section that will find a surgeon trained in this drug in your area.

I had it done on my finger with a 130' curl . After the injection my finger was straightened pulled from a fist position by the physician. Same bio drug for feet Xiaflex.

06/02/15 08:54
Rajput1 
06/02/15 08:54
Rajput1 
Re: Ledderhose Lessons Learnt (from Australia)

Thanks Cherise.
I decided to go for Radiation therapy and have completed my first five sessions last week. The nodules in 1 foot are really small, and the other foot has 3 smallish nodules - from what I'm reading, one has to access RT sooner rather than later for it to be most effective. Also, I reassured myself that the radiation dose is comparatively small and the additional risk of cancer as a result is minimal. If it is successful - not a given - then that's great. If not, I plan to try Dr Chin's method in Brisbane.
My bad news is I am probably developing Dupuytren's in my hands. I will do RT for that too.

I'm interested in meeting any Canberrans with either of these conditions. Please email me if you'd like to meet...

06/03/15 03:15
Cherise 
06/03/15 03:15
Cherise 

Re: Ledderhose Lessons Learnt (from Australia)

Hello,

LD and DD are so difficult to treat. This is such a fickle disease. What works for one depends on so many variables for the same treatment to work for others. Looking back I wish I had left mine alone. In my case every attempt to stop the progression only made the disease more aggressive.

I hope RT helps both your hands & feet. I sincerely wish you the best success in treatment. Healing blessings sent your way from the U.S.

I hope you can meet others in your area too. Have you asked your doctor if he can contact other patients he has treated with DD to contact you. I would bet they too would like to meet with others with DD.

KEEP ME POSTED

Kind Regards
Cherise

06/03/15 12:17
GaryBall 
06/03/15 12:17
GaryBall 
Re: Ledderhose Lessons Learnt (from Australia)

shmiddo:
Hi guys,

Just wanted to share some do's and don'ts I've learnt after 2 years with Ledderhose and Dupuytruen.

DO get RT at the first sign of Ledderhose or Dupuytruens. (it is the only known way to stop progression of the disease, and it will progress!)

DON'T travel to Germany just to get RT. (The specialist in Hamburg, Germany is very helpful over email and would probably be happy to talk to your local RT clinic to provide advice on the treatment which is relatively straight forward, published and available to RT therapists all over the world)

DO get gel heel cups for your shoes (custom orthotics are a waste of money, the most important thing is to take the weight off the arch of your foot)

DO get plantar fasciitis compression socks for further arch support (however they do get uncomfortable if you wear them all day, I usually wear them to go jogging)

DO avoid sugar, processed foods, alcohol etc for general health and well being (obviously diet depends on the person but I try to stick to low sugar fruits, gluten free, dairy free and whole foods wherever possible. I can't say whether diet affects the growth of nodules but they are definitely more painful when I don't eat properly or drink a lot of alcohol)

DO try and do a liver cleanse every month to improve your general health (see dr hulda clarks liver cleanse, I can send you my tips for making it more palatable if you're interested)

DON'T get accupuncture for ledderhose or dupuytruens (it's expensive, aggravates the nodules and doesn't solve the underlying cellular problem of collagen overgrowth. I even tried fire needles for a few months which involved inserting red hot needles into the nodules, very painful and no results. The only thing that seemed to provide pain relief was the plantar fasciitis technique which involves needles in the calves to relax the muscles and stop them pulling the plantar fascia so much. After this treatment I had no pain in the nodules but unfortunately it came back the next day. I contacted various accupuncture therapists but none of them could help)

DO stretch you calves daily to take the pressure off your plantar fascia

DO try adding supplements such as fish oil to your diet and rubbing magnesium oil into your skin for general health (other supplements claimed to reduce nodules include bromelain, potassium iodide aka Lugols solution, vitamin E, DMSO, verapamil, L-carnitine, however all these claims are purely anecdotal so it's up to you if you want to try them. I have tried most of these but have given up as I'm yet to find any real evidence of actual results)

DO look into hyaluronidase injections (as mentioned in this forum, there's a doctor in Texas that has been treating ledderhose using these injections for many years and has had good results and no recurrence. I am currently trying to find someone in Australia that would be interested in giving me the treatment, not easy as it involves using the drug off patent. Don't take my word for it though, check the other posts on the forum and the ledderhose.blogspot website)

DON'T get surgery (both surgeons I talked to in Australia, however happy to do the surgery, strongly advised against it. Also, there is no shortage of horror stories on internet forums about recurrence of nodules and various complications. At the end of the day, it's a cellular problem so surgery is not a permanent solution)

DON'T try to link it to another disease or stress about it why it's occurring (my ledderhose appeared after years of long distance running and playing football. I've always been active, eaten healthy and don't have any other medical conditions, the only thing I can put it down to is genetics, foot type and over stress. Unfortunately you don't know what it is until you've got it so there's no one to warn you against it.)

In conclusion, when there are many treatments for a medical problem such as ledderhose or dupuytruens, it usally means that none of them work. If there was a sure thing, we'd all be using it and there would be no need for this forum. At this stage I'm of that belief that if RT can stop the growth of the collagen cells, then the hyaluronidase injections can be used to reduce the collagen growth, and a healthy lifestyle will reduce the risk of future problems.

I hope that helps in some way. Please feel free to add to my comments above or contact me for any more details on my experience so far.

Cheers.
Hi shmiddo

Thanks for your informative and extended post....as a patient of LD I can relate to and agree with many of the points you raise..This post would be a great place to start fo new LD patients......However I am curious why you advocate the hyaluronidase injections and have not mentioned the TPA injections being offered in Brisbane....it seems to me that the process very similar with similar outcomes....Is there something I m missing....

Many thanks

Gazza

Edited 06/03/15 12:20

06/07/15 04:43
Pedro 
06/07/15 04:43
Pedro 
Re: Ledderhose Lessons Learnt (from Australia)

Hi all,

Ineresting read (Y)

While I have no personal experience with Lederhose, if it has any relation to Dupuytren's, RT might not be the only beneficial solution - it might actually be much simpler and cheaper than all that.

May I recomend you read my thread in "Other Therapies" -> DUPUYTREN's CONTRACTURE - A Simple Remedy - Massage, Ginger and Knowledge, if there is any relation I am pretty sure the remedy will prove beneficial - obviously you would be substituting "Hands" for "Feet".

All I ask if you are ably to try out the therapy, whatever your experience after about a 2 weks of daily use (at least Evening and Night), kindly take the time out to provide feedback.

If/when providing feedback, may I suggest creating a new thread in "Other Therapies called "LEDERHOSE - A Simple Remedy - Massage, Ginger and Knowledge" if no such exist - I am interested in following your experiences and hope they prove positive.

Wish You all a speedy recovery.

06/13/15 15:18
Rajput1 
06/13/15 15:18
Rajput1 
Re: Ledderhose Lessons Learnt (from Australia)

Pedro
Thanks for your comments. Can you tell us how you prepare the ginger? I would like to try the treatment and will let you know how it works.
Rajput1

07/21/15 03:33
Rajput1 
07/21/15 03:33
Rajput1 
Re: Ledderhose Lessons Learnt (from Australia)

Just a quick update. Had second round of radiation about two weeks ago.

My specialist told me that I would be unlikely to know whether there has been any success until "two to three months after the second round of radiation".

Just letting those who are considering / are undergoing radiation know this. I was anxious about when I'd know.

07/21/15 18:39
spanishbuddha 

Administrator

07/21/15 18:39
spanishbuddha 

Administrator

Re: Ledderhose Lessons Learnt (from Australia)

Rajput1:
Just a quick update. Had second round of radiation about two weeks ago.

My specialist told me that I would be unlikely to know whether there has been any success until "two to three months after the second round of radiation".

Just letting those who are considering / are undergoing radiation know this. I was anxious about when I'd know.
I don't know about LD, but I remained unconvinced RT had helped my DD for the first 12-18 months after treatment! Now 3 years on, I'm pretty sure it helped. So be patient and don't set too hard a schedule on your hopefully positive outcome. Having said that there are plenty of good reports after just a few months with DD and LD, but everyone reacts and respond differently.

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Radiation   therapists   Ledderhose   accupuncture   unfortunately   Dupuytruens   nodules   plantar   interested   injections   collagen   Australia   needles   treatment   hyaluronidase   progression   Lessons   fasciitis   however   uncomfortable