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Numbness in big toes
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12/12/20 21:22
Akwatia 
12/12/20 21:22
Akwatia 
Numbness in big toes

Hi all,

I have had Ledderhose for about 15 years and have had three operations in my left foot and one in my right. I have grade 3 Ledderhose in both feet again admin with lots of pain and difficulty walking at times. After surgery in my right foot my big toe was numb which I put down to the nerves being damaged in the surgery. However, as the Ledderhose has got worse in my left foot, aver the last few months my left foot big toe is now going numb. Does anyone know why?

I also have Dupuytrens in both hands and have had surgery in my left hand.

12/12/20 22:00
Lumpzzz 
12/12/20 22:00
Lumpzzz 

Re: Numbness in big toes

Very sorry LH in your feet. When feet are effected it is so painful. I have the exact issue as you described. LH in both feet haven’t had any surgery, with large nodes on the bottom near the toes and side the inside of my arches. The big toes are also numb . In my case it’s from deformed big toes and Morton’s nerve syndrome.

Hands were treated with xiaflex over 10 years ago and doing well with some minor contraction and nodes.

I have difficulty finding shoes that are comfortable. With the use of arch inserts it’s seems to help avoid the pressure on the nodes on the bottom of my feet. I’m in my 70’s it’s slowly becoming a serious issue.

Edited 12/12/20 22:01

12/13/20 06:24
wach 

Administrator

12/13/20 06:24
wach 

Administrator

Re: Numbness in big toes

Have you considered radiotherapy https://www.dupuytren-online.info/radiation_therapy.html of your Ledderhose? According to our patient survey radiotherapy seems to be the most effective treatment https://www.dupuytren-online.info/patient_survey.html . An issue with radiotherapy might the price. It really depends on where you are living and how you are insured. It is very expensive e.g. in the USA and much less in the UK or Germany.

Wolfgang

12/13/20 08:40
Akwatia 
12/13/20 08:40
Akwatia 
Re: Numbness in big toes

I am considering the total removal of the fascia in both feet to avoid recurrence and extension (to other areas). I accept that surgery for Ledderhose is overall more critical than for Dupuytren and should be considered as last resort, but after four procedures (the most recent bing six years ago), but nodules are now so large and causing too much discomfort for any other course to be realistic.

12/13/20 13:49
wach 

Administrator

12/13/20 13:49
wach 

Administrator

Re: Numbness in big toes

Total fasciectomy seems to be a successfull treatment for https://www.dupuytren-online.info/ledderhose_literature.html . Unfortunately, a total removal of the fascia of both feet couldn't avoid disease extension to the hands because the disease is most likely in the genes.

The fascia of the foot have a function when walking https://www.podiatrytoday.com/understand...-plantar-fascia . Personally I would be afraid that a total removal of my feets' fascia might make walking a little shaky but I am not an expert in that. Has your doctor discussed that with you? I guess, once it is removed you can't get it back ...

Wolfgang

12/13/20 14:24
Akwatia 
12/13/20 14:24
Akwatia 
Re: Numbness in big toes

Thank you for the various links and references Wolfgang, they are very helpful. Thank you also for your concern about post operative mobility. My Ledderhose is a lot more aggressive than by Dupuytrens. My ability too work any distance is already limited and because I am compensating when walking it is causing strains in my hips and knees, so I don't think a full removal will be a down side, on balance it will allow more normality overtime. what started 15 years ago as an innocent lump has turned into a very painful disease. I'm as the end of the road on options.

12/14/20 04:03
Seph 
12/14/20 04:03
Seph 

Re: Numbness in big toes

Akwatia; I am a little hesitant to chime in here as you say that you have already had several surgeries and I couldn't possible know what the implications of that might be. Having said that I would caution against radical surgery.

I have chronic DD in both hands and both feet. To give some context my fingers in both hand are a mess and I now have sheets of DD forming at the base of both thumbs. I have had surgery once and NA more than a dozen times. I was scheduled to be in Paris in June this year for another round of NA when Covid hit and we became confined to Australia.

Then the feet. I have significant lumps in the arches of both feet and large LH masses running behind both sets of toes. I have some numbness in my left big toe. I had surgery to remove the first lump that appeared in my early teens but it returned twice the size within 2-3 years so I resolved to stay away from surgery.

As the LH disease grows and changes i have periods were I have to deal with significant pain. Also in the my 20's and 30's the lumps in the arches of my feet would rub on the soles of my shoes and blister. I would pop the blisters and rub with methylated spirits. Over time the skin toughened and the blistering stopped.

Over the years I have found that the pain in my feet has one simple solution that people don't want to hear and that is to push through the pain. It seems to me that the growth on the LH material displaces or puts pressure on nerves but if you push through they eventually settle down and the pain disappears.

For the past six months or so I have had intense pain through the back of my heals when I first start to walk in morning or when I have been sitting for some time. When walking it feels like I am walking on bruises but when I sit down and press into the area that is sore there is no pain. My conclusion is that nerves are under pressure when I walk probably due to the growing LH mass behind my toes. My solution is to get out and walk. Starting slow and then increasing the pace and pushing forward with my toes. I am walking 10-12km each time. Not fixed yet but I am making progress and I expect the problem to go away.

To complete the picture I am 66 so I have been dealing with this disease for at least 52 years. For me the LH came first but I had LH and DD both feet and both hands by my early 20's.

The surgery that you have had may have consequences that I don't understand but absent that information I would be advising to push through the pain. Stay active, keep pushing and the pain will go away.

Good luck

12/14/20 17:16
spanishbuddha 

Administrator

12/14/20 17:16
spanishbuddha 

Administrator

Re: Numbness in big toes

Seph:

For the past six months or so I have had intense pain through the back of my heals when I first start to walk in morning or when I have been sitting for some time. When walking it feels like I am walking on bruises but when I sit down and press into the area that is sore there is no pain. My conclusion is that nerves are under pressure when I walk probably due to the growing LH mass behind my toes. My solution is to get out and walk. Starting slow and then increasing the pace and pushing forward with my toes. I am walking 10-12km each time. Not fixed yet but I am making progress and I expect the problem to go away.


Hi Seph. I'm sure you know your feet better than anyone, but you describe classic symptoms of plantar fasciitus (PF) in this one specific instance. PF is different if that is the case, akin to tendonitis but inflammation of the plantar. You could test this symptom by wearing a night boot for a few days, that maintains the foot in dorsiflexion, if that is tolerable to you with LD; the immediate pain in the morning will be diminished if it is PF. If confirmed the treatment is usually conservative, stretching, icing, night boot, insoles, but you would have to determine what is applicable in your specific case. I hope this is helpful, if relevant.

I had PF, lasted best part of 2 years, was quite miserable, and I tried the conservative treatments quoted, none really helped apart from the boot. Eventually I had a completely unrelated surgery and had to cease exercising for 3 months (I play tennis) and in that time the PF disappeared.

Best wishes SB

12/15/20 01:58
Lumpzzz 
12/15/20 01:58
Lumpzzz 

Re: Numbness in big toes

Good info . SHARED .
I am at a crossroads too. I have not made any decisions to do surgery or radiation treatments. Very little known for treatment without risks. Cannot walk on my left foot at all and forcing it walking anyway just makes it worse. Using cushioning in shoes helps a bit. I am the only caretaker for my DH . I guess icing, ultrasound and applications of DMSO will have to do for now.

12/15/20 07:59
Seph 
12/15/20 07:59
Seph 

Re: Numbness in big toes

Hi Seph. I'm sure you know your feet better than anyone, but you describe classic symptoms of plantar fasciitus (PF) in this one specific instance. PF is different if that is the case, akin to tendonitis but inflammation of the plantar. You could test this symptom by wearing a night boot for a few days, that maintains the foot in dorsiflexion, if that is tolerable to you with LD; the immediate pain in the morning will be diminished if it is PF. If confirmed the treatment is usually conservative, stretching, icing, night boot, insoles, but you would have to determine what is applicable in your specific case. I hope this is helpful, if relevant.

I had PF, lasted best part of 2 years, was quite miserable, and I tried the conservative treatments quoted, none really helped apart from the boot. Eventually I had a completely unrelated surgery and had to cease exercising for 3 months (I play tennis) and in that time the PF disappeared.

Best wishes SB


Thanks SB; you might be right but I treat it all as connected. My view is that I must maintain my exercise regime as I like good wine and food. I still play tennis twice a week (3 hours on Saturday afternoon) and go to the gym 5-6 times per week and we have now added in 8-12 km walks 2-3 times per week. Regardless of the cause of the pain it does go away once I get moving and only comes back after I have been sitting for a bit and get up to move again. As Dolly Parton is known to say "I would rather wear out than rust out".

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