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Could somebody please help? Ledderhose
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07/11/2012 19:01
Metzie 
07/11/2012 19:01
Metzie 
Could somebody please help? Ledderhose

Hi,
I have Ledderhose Disease in my right foot & I was diagnosed by 3 foot specialists, which claim I need surgery to remove it. Will I be OK if I have this done, or will it make the condition much worse?.....The surgery will be scheduled soon!...Please help! Thank you for any and all replies...Metzie

07/12/2012 08:41
spanishbuddha 

Administrator

07/12/2012 08:41
spanishbuddha 

Administrator

Re: Could somebody please help? Ledderhose

Metzie. Everyone is of course different and there are different experiences with the different treatments.

The consensus with LD is to try 'conservative' forms of treatment first. This means adjust your footwear, also lifestyle, see a podiatrist and try various orthotics, and also perhaps try some foot rolling massage. For some people this helps for a while. The problem does not go away but you cope and manage living with it.

If there is constant pain or pain that interrupts sleep, or such that the above is no longer helping for daily activities then you may want to consider another treatment. The first recommended is Radiotherapy. Is that a possibility for you? There are quite a few reports, including on this forum, of a positive outcome with Radiotherapy. Not immediate but 6 months to 2 years following the treatment.

Surgery for LD seems to have more reports of problems than outright success. There are difficulties with healing, recurrence, scar tissue, pain and so on. This is why it is usually avoided. If you are not in constant pain, and can cope with some pain when walking and recover then delay or avoid surgery of possible. In the US there are reports of using cryosurgery as a successful alternative. Can you investigate that?

Lastly if you do decide to have surgery, make sure your surgeon has done LD surgery many times before, and the majority of his patients are pleased with the outcome. Do some background research on the surgeon, ask questions, and if in doubt hold off. Don't just use a general orthopaedic surgeon - think I've told you that before?

Hopefully some other LD patients can chime in here with recommendations.

07/12/2012 09:27
Gary1987 
07/12/2012 09:27
Gary1987 
Re: Could somebody please help? Ledderhose

Hi,

I am not from the US but I have gone through a very similar thought process to you. I was very close to considering surgery and it was the only option left for me that wouldn't cost a lot of money but even with that being that case I decided to go for radiotherapy and pay rather than have my foot cut on. Certainly before I had this done I had had a steroid injection which seemed to hold things off for a little while (though a lot of people including the specialists think it doesn't do all that much) and I had custom made orthotics as well.

As SpanishBuddha has mentioned there are a lot of reports of people being unhappy with it and a lot of people saying just do not consider it as an option whatever you do but there are some people that have had success with. The truth is though (at least from what I have read in medical journals and textbooks) that the changes of it coming back or causing problems when you have surgery is something like 80% whilst with other options such as radiotherapy the chances of it working are 80% and that is why I made the choice I did and was lucky enough to have grandparents that could afford it.

There are other options, as mentioned cryosurgery is used in the US, I know that this guy does it and has experience with it http://ledderhose.blogspot.co.uk/2012/07...ryosurgery.html

Personally I decided that in the UK radiotherapy was the best option for me and I wanted to avoid surgery until all other options had been tried. I feel I made the right choice as I have not yet completed my full dose (I go back for the second week on Monday) but I think I am starting to see improvements, there are no shooting pains when at rest now and I think that the lump is starting to get smaller. I will of course keep everyone updated.

Gary

Don't want it to seem like I am promoting my blog too much so I have put these afterwards so ignore if you like but I have some interviews with patients that have tried surgery and radiotherapy. A great place for loads of these is on this very site just go to http://www.dupuytren-online.info/dupuytr...xperiences.html where there is one on Cryosurgery http://www.dupuytren-online.info/Bashkar_Ledderhose.htm

Surgery patient 1 - Certainly not happy with results
http://ledderhose.blogspot.co.uk/2012/02...se-surgery.html

Surgery Patient 2 - Too soon to tell but certainly doesn't make it sound pleasant http://ledderhose.blogspot.co.uk/2012/03...se-surgery.html

Radiotherapy Patient 1 - Happy with the results
http://ledderhose.blogspot.co.uk/2012/03...diotherapy.html

Radiotherapy Patient 2 - Again happy with the radiated foot
http://ledderhose.blogspot.co.uk/2012/03...t-number-3.html

07/21/2012 05:36
Seph 
07/21/2012 05:36
Seph 

Re: Could somebody please help? Ledderhose

Metzie; I agree with spanishbuddha and Gary1987. Leave surgery until you have explored all all the conventional non invasive choices.

I have Ledderhose disease in both feet plus Dupuytrens in both hands. Ledderhose appeared first in my early teens and the Dupuytrens started in my early twenties. Surgeons operated on the arch of my right foot when I was 15 (I don't think they had any idea what they were doing). Within 2 years the lump grew back as a wider mass under the scar. There has been no pain from the scar but, from what I have been told, I was lucky.

I have a growing problem at the moment with one foot and I am planning to try RT.

Seph

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