Firstly I would like to again thank you for allowing me to join this group that...

I was sent to the Cleveland Clinic in September 2009 for pre-op testing and in early October I underwent a VSG (vertical sleeve gastrectomy). In June 2012 I went to Montreal, QC to have the second portion of the surgery to complete my DS (Duodenal Switch). Presently I am sitting at 265lbs so nearly a third of what I once was. I mention the weight loss surgeries and the weight as initially my doctor believe this could explain my foot pain. I'm dealing with various nutritional deficiencies due to being on a low/fixed disability income and the Ontario government will not cover any high dosage or bariatric vitamins/supplements. Last April I spent two weeks in the hospital being pumped with IV calcium as the ER doctor said my level was the lowest he had ever seen in his career (1.2). However they never addressed the vitamin D deficiency so I suspect my calcium level a year later will be back to where it was (I'll know on the 29th).

Now whether any of my issues stemming from my weight or surgeries have helped in anyway I don't know. Perhaps it was all the additional walk and use of the stairs in my mom's house that caused trauma to my foot and is to blame. At the end of the day it has been painful and frustrating given it took a year and a half to arrive at a diagnosis.

I was referred to a surgeon in Toronto (Dr. Syed), but he focused on the ankle and suggested that I have an ankle fusion done. I'm not keen to do that given that I do not have pain in my ankle. This is why I am going the route of seeing if specialized shoes and braces will be enough to help first.

I was being prescribed various medications for nerve pain purposes (bunch of anti-depressant meds seeing as now seem to be more useful for nerve blocking), but they didn't help at all and cause more problems. Pill popping is prevalent in my family and I was not keen to go that route honestly. I don't drink, smoke or use recreational illicit drugs. Although I am curious to see if medical cannabis would be helpful - but I have pain/medical issues in other areas of my body besides the foot (and a friend of mine in California swears by cannabis for natural medicinal purposes).

To my knowledge I am not aware of anyone else in my family have is DD or LD, which makes this uncharted territory for me. Just from initial online reading I'm not keen on the surgical options available. As for radiotherapy it's another area I'd prefer to refrain from, so I feel as though my options are limited based on personal preferences. I did read a post on a thread elsewhere about someone using essential oils diluted with coconut oil and that it caused their fibroma to disappear and they updated several months later saying it had not returned. That is a lead I was hoping to pursue to see if there is any truth to it. Although I feel I may be in the later stages due to the size of the fibroma (I believe it was roughly 2cm by 2cm off the top of my head), and the fact that the pain is at times noticeable when just sitting.

All that said I kind of apologize for the length of this post. I wanted to give a fair bit of background information that I felt might be prevalent to my ordeal and how I've ended up here. As it stands I don't believe I have any issues in my hands, however I did notice myself rubbing around my palms looking before typing all of this, heh.

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  • Jeff, you have been through an awful lot! I am so glad you found this support group. I am a newbie myself and do not have LD, but I know folks will be chipping in here soon to give you some great suggestions and support.

  • Hi Jeff, welcome and let us know if you need help finding info. No need to apologize for your post, it's your story! Would you mind posting a pic of your feet. You can add yourself to our map if you like.

  • Wow Jeff what a journey and big congratulations to you for your massive weight loss. I struggle to just lose 10 pounds I cannot even imagine what you had to go through to lose 500 pounds? Surely continuing to lose weight will be helpful for your feet, so please continue your weight-loss goals. I am getting the sense that your biggest concern right now is pain relief, without pursuing radiation therapy. I suggest that you read the transcript from Dr. Jeffrey Coster's coffee talk. He is there forum expert podiatrist and very knowledgeable about the disease. Take one day at a time you're very new here read as much as you can ask questions read some more ask some more questions. I'm also going to tag Jonn Ord and Paule Gauthier our members who are starting a Canadian dupes group. They may be better able to help you with resources near your home. We are sorely lacking names of podiatrists who have experience treating the disease in the US and I'm not even sure we have one podiatrist on our map in Canada. It's possible that a Cortizone shot might help you and even some topicals like a simple salon pas pain patch that you can get over the counter in the drugstore. Whatever you do don't let anyone operate on your feet as it can exacerbate the disease and has a high rate of failure. Keep up the great work and keep dropping in with whatever questions you have we are here for you!

  • Please also forgive me for typing errors and miss spellings as I use voice to text at the end of the day and sometimes don't bother to go back and correct. I get more done this way if everyone can forgive me for the errors.

  • I know someone else who does this (but they are just lazy and don't want to type out their emails or text messages) and compared to any minor errors in your message at least it was comprehensible sentences, heh.

  • I am nearing the 500lbs mark; granted I figure to have 20-30+ pounds of excess skin and depleted fat cells that could eventually be surgically removed (I'm in the beginning stages of seeing what is covered by my provincial healthcare and the costs associated with anything further). My initial goal was to get to 300lbs and I felt that 250lbs might be a reasonable goal weight. I'm 6'3" with a large frame - however it's tough to gauge due to the 'apron' being in the way. Regardless I am happy, but I feel due to the surgeries and the malabsorption issues coupled with the government not covering supplements that for the most part I have not been able to afford for most of the past five years I feel less healthy now than I did at my heaviest. Tough when it feels so bittersweet.

    At this point I'm self-diagnosing myself, but I feel that it is correct given how it has progressed. Hopefully my family doctor has at least heard of LD. I do want to see about some sort of referral, but I may hold off on that as I seem to be covering my bases already (orthotics, braces, shoes). I will be taking time to see if there is any mention of essential oils helping to shrink nodules as it almost seems too good to be true.

    You are correct that pain management is the main focus. I have noticed that when sleeping keeping my foot covered (thus the nodule getting warm) tends to irritate and cause pain so I try to keep my foot uncovered.

    I am hopeful that the bracers will help me from developing further nodules - especially given that I feel this is now developing on my left foot (I have also noticed that my left foot is beginning to turn outward more, which might be attributed to the limp I've developed due to my right foot. It's a pity that there are limited surgical options when it comes to the feet for straightening them. The orthopedic surgeon I saw initially suggested a surgery to do that before changing his mind and saying the ankle fusion was more appropriate. I wanted to the lose the weight so that I could eventually be more active and I fear right now I've traded in one issue for another. However I'm feeling more optimistic than pessimistic!

    At any rate I intend to do some perusing of the group, ask some questions if I'm unsure of anything, etc. This is how it was for me with my weight loss surgery as I absorbed as much information as I could and I've shared my story with others and helped people with their questions and concerns. I like to learn and put it to good use to help others.

  • Hi Vickie, I'll get some photos of my feet up tomorrow if possible. I'll show the lump and callus as well as show my natural position for my feet that will illustrate just how out turned they are (the right is worse than the left).

  • Hi Jeff and welcome to the group. I have LD which also developed after a significant weight loss (around 150 pounds) and increased physical activity. How interesting! I'm also currently developing DD in my hands but at this point it's mostly an annoyance... Occasionally painful. I'm in California and also swear by medical marijuana, but for a million other things. It doesn't do anything for my pain LD at this point. I also use a Cannabis balm on my tumors.... We'll see if that helps! Stay tuned! So thanks for sharing and welcome to the group!

  • Sorry I'm redundant

  • I have found that oil of magnesium works pretty well for DD...but LD...I have found nothing that works well....but I'm going back to foot soaks in apple cider vinegar and Iodine.....

  • Jeff, I admire your strength and courage.. you could try Voltaren gel to rub on the feet and hand nodules and cords.. i use it a lot and have not had progression of DD nodules in 7 years since the last flare...i have developed two nodules in my left arch but since i noticed them i have kept them somehow the same size, like small peas, for over two years... i also use it on arthritis pains and disk nerve pain from 8 spinal surgeries, elbow pain, knees, etc. it is an NSAID in gel form.. i cannot take it or any other NSAIDs by mouth except aspirin, which seems to help a lot with nerve pain.. not sure you can take it with the bariatric surgeries... and it can cause dreadful constipation in pill form by mouth... your doc can give you a small tube.. the 100mg tube here is expensive so it may be cheaper in Canada...