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2 years after RT update on my severe LD
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16.02.13 21:47
drumhead 
16.02.13 21:47
drumhead 

2 years after RT update on my severe LD

OK folks. It's been two years now since RT at OU Oncology with Dr. Herman. I have severe LD on both feet. Here are my results:

1. SURGERY - to EVERYONE - does NOT work - you are asking for trouble - BIG TIME! Most of the time, the nodules come back before you even heal. Keep your feet, avoid infection and tons of money for more misery.

2. My RT was a 50% success. It softened the 7-8 bumps on both feet for a couple of years. But, and listen closely, I STILL had pain. So, I finally found a pain management doctor (I've seen everyone it seems) who actually knew nothing, but took the time to read up on this disease. I have to take two meds to keep the pain under control - Still. Hydrocodone and Gabapentin seem to get me thru the day and night.

3. You know the issue with these meds. After a while, they quit working as well, so he upped me and, yep, it helped. Today? I have two NEW growths where they did NOT use the RT, one on the side of my right foot and one that is very sore on the opposite side of the ball of my right foot. As for the other where RT was applied, still some pain, but because of the meds, I'm certain if I stopped, the pain would be awful. I still feel pain, now have two new 'buddies', seems this disease searches for areas where the RT was not applied. I'm 57. Had this since early 20's. It's progressive, along with the 8 surgeries on my fingers - which non have returned - yet. Hands are ok so far. Feet, well I would suggest RT as the ONLY treatment, because I did get some relief and the nods haven't grown, some have gotten smaller - but, not out of the woods.

4. Understand what you are dealing with. Basically, after seeing every type of specialist known, they know nothing about cause or treatment. After RT, I realized this - I was going to have to take some kind of med(s) to deal with this. Surgery is a great way to lose a foot - and it does NOTHING to STOP the progression. Trust me. So, you have this and are wondering "WHAT DO I DO?" What complicates this is this - even the best specialist don't know what it is, and almost every single specialist, they were baffled, most had ZERO knowledge of this. It's pretty awful

At my age, I realize that there isn't anything I can do (maybe another round of RT), but more radiation and it only stops the progression of what is already there. There is the 50%. I will probably be on pain meds until I die. They DO provide pain relief and get me through the day and night. Cramping is now in the mix, not too bad, but sometimes you feel it at night and how much you are on your feet.

So, where are we? Well, try RT and maybe I'll do it again - or HAVE TO, because this just does not go away - at least for me. Going to UTSW Dallas, some of the very best Drs there, and I'm going to a new specialist to deal with the pain. Nothing has provided any relief for me - and I have tried EVERYTHING! I even stopped drinking alcohol to see if that supposed connection had anything to do with it. Nope. It doesn't.

So, that's where I am now as of today. The only relief is pain meds, and they are effective.

Here is what I recommend if you have this LD = get a round of RT, Dr Herman is great at OU in Oklahoma. This procedure does seem to stop the progression of what you already have there. I fought with insurance for one year before they would approve my treatment! All this chaos is because no one knows what this is. After getting RT, go to a pain management Dr. who can, and is willing, to understand chronic pain - because if you have this, you KNOW it is chronic. Get on a responsible pain med regimen and go with this until there is a way to find a cure, which I don't believe I'll ever see before I die. Gabapentin with hydrocodone works wonders, but you will have to probably, at some point, increase dosage as you become tolerant and dependent on ANY pain med.

I know that isn't the way I want to live - BUT - I can have SOME quality of life if I have the ability to kill the pain so I can be active. I can drum, play golf, can't run anymore, but I can do many things that don't require LOTS of standing, walking, etc. It's not an issue with the right Dr, because chronic pain that goes untreated, can cause depression and all kinds of health issues.

This is my recommendation to everyone. Yes, it's a hassle to deal with getting scripts for pain, but, I can LIVE and ambulate with very little pain. That's just the way it is for me. Better to have some quality because I'm only 57 and am active, but I know I could not do anything unless I had some form of pain meds. Sad, but it's that or? What? Nothing. That's right, nothing. Again, this is just what is going on with me. I recommend RT, it helps somewhat, but long term, the medication has been a God send for me. I am totally responsible, take as directed, and my pain is minimal. You have to decide how much quality of life you want. Good luck to all!

Drumhead

17.02.13 06:45
Seph 
17.02.13 06:45
Seph 

Re: 2 years after RT update on my severe LD

Drumhead; I agree with you that surgery doesn't work for LD. Or at least doesn't work for most people and there are significant risks that it will make things worse. I have been told that even a biopsy can have the effect of spreading the disease.

I had surgery in my early teens and the growths returned within months. In the same spot but wider. I am now 58 so I have been dealing with this for 45 years.

Regarding treatment options there is an additional option that you might want to consider. I had NA performed on both my hands last December by Dr Manet-Chopin in Paris. She is a Rheumatologist rather than a hand surgeon so she is not limited to just dealing with hands. I showed her a new growth that is developing on one foot and starting to cause problems.

Her advice was that I should try and do nothing but definitely I stay away from surgery. I will be back in Paris later this year and if the growth is affecting my quality of life she will do NA but with cortisone mixed in with the anesthetic. No cord to break of course but apparently the effect is that it softens and shrinks the growth. If I have it done I will let you know how it turns out.

18.02.13 18:55
Christl 
18.02.13 18:55
Christl 

Re: 2 years after RT update on my severe LD

What about Cryosurgery? There is talk about that. Have you two considered that? I know it is also a temporary fix, seems everything is, but it could reduce the pain and make walking possible again, so I read. There is a Dr. Spilken in NJ who does that. He was also at the Dupuytren convention in Miami couple of years ago. Seems there is no talk about that on our forum, so not many people are doing it, I assume.
What about some pain cream for the feet? Is there such a thing? Several people reported putting lidocain cream on their feet, it numbs the pain and makes walking possible.
Good Luck to both of you and all of us.


Christl

18.02.13 20:17
drumhead 
18.02.13 20:17
drumhead 

Re: 2 years after RT update on my severe LD

I've been dealing with this for so long, that I have tried everything but that. HOWEVER! I've never, ever heard of Cryo working as Dr Herman explained that the fibrous tumors have chromosomes and RT destroyed the ability of the tumor to replicate. Removes an x or y so it can't get bigger. For Me - my only way after 15 specialists, RT, cortisone, name it - the only way I can have ANY, and I mean ANY kind of quality of life? Something to disassociate the pain from my feet to my brain. Once the pain is removed? I can do what I want without the CONSTANT pain or stepping wrong or standing too long at a funeral, etc. I know pain killers CAN be bad, right? Right. But, watch youtube or read about what chronic pain does to the brain. It is not good, especially over time. So, I finally can live pretty much - not always - pain reduced and the pain meds make a quality of life I can't achieve any other way - I exhausted all efforts to find a solution because I have a lot of life left.

If Cryo was successful, perhaps someone can shed some light on a success story. Everything about LD as far as treatment goes? It's all temporary. But, the right combo of pain meds helps tremendously, not only with your foot pain, but your mental state. A round of golf is awesome with friends, but if your feet are hurting? Forget it. I take my meds before I go and then when - WHEN - they start to ache or I feel that stinging? I take another killer and I'm good to go. Now, remember, things you do one day that are on your feet for lengthy periods of time? Tomorrow or that evening, you are gonna feel it. I soak my feet in hot water, then cold water after playing 18 holes. Seems to help relax them a bit. But, the next morning? Maybe cramping or some stiff pain right off the bat. Take PKs, rest a bit, and then get up and it is SOOOO much better.

There is a stigma about pain. However, there SHOULD be a differentiation of people who use pain meds for chronic pain (In our case, INCURABLE DISEASE, PROGRESSIVE and here to stay) vs. people who are addicted - those morons who make it tough for us (as if it isn't tough enough already explaining to anyone what we have) to get relief. I don't care anymore - If I have to take x amount of whatever to have some quality of life and be active? Then so be it.

The ONLY thing I can say is this - RT helps somewhat - but, does not cure, nope. It helps, but if you have an active lifestyle on your feet? Go to a Pain Specialist - a good one - who will take the time to read-up on this LD and DC. There are some that will, and it is a learning experience for them. Most every Dr. I went to had never seen this. Several took pics of my feet. Don't live in pain - no cure for this. If that is the case? Use the pain meds EXACTLY as prescribed. I have going on 6+ years! Never looked back but have to make adjustments when you get too tolerant, change up, add GABA (Neurontin) and block the pain from several angles. It helps SO much for me, as I am a drummer, golfer, and I used to run, play baseball, but at 56 and with these feet of mine, I can't run - it makes it too painful the next day. And, as most of you know, the more you POUND these nodules, stretch the tendons? You will notice a difference the next day. I'm NOT advocating using Pain Meds, BUT - I AM sharing with you something, that for me, helped when I had given up all hope to live a normal, pain free life. Had 8 pip=nodule surgeries and one DC on one finger, removing TWICE!! It's all good with hands now, some took two attempts, but gone for now.

I will answer any questions from anyone (I've had this since my mid 20's) and I'm almost 57, been thru it all. I will also (private message) tell you what meds work best for this. A combo of three are, and will be for you as well, a GOD SEND! IF you use them properly, adjust to them, know how to be RESPONSIBLE? It is the most effective treatment I can recommend. It won't make the LD go away (RT helps some with the junk you have now), but after RT? GO, go see a certified, quality pain Dr. who will take the time to understand the hopelessness we sufferers have and how it affects our quality of life!! I can't emphasis that enough! You are NOT a drug addict, but someone who has an INCURABLE disease! With PAIN! On your FEET NO LESS! Anything that can allow you to do NORMAL activites, without side effects, or MINIMAL side effects, is worth the effort. It's finding a Dr. that can understand how debilitating this LD and DC is.

Good luck and if you had diabetes, wouldn't you take diabetes meds? OF COURSE YOU WOULD! Chronic pain is chronic pain - period. You know you can't rely on surgery (NEVER) on your feet without a great chance of these nodules returning en masse, so do the smart thing. Run from the knife and to a good pain Dr. You won't be sorry. And, your Dr. will learn something in your disease, I promise. I'm not an expert on LD, but hope this helps.

Drumhead

03.08.13 18:16
jbrya 
03.08.13 18:16
jbrya 
Re: 2 years after RT update on my severe LD

Hi Everyone,
I am a 59 year old male, who lives in OKC, OK. I developed DD at 55. It started with nodules in the right hand and small nodules in my left foot. I went to see my family doctor in September, 2012 at age 58. He sent me to a hand surgeon who said to come back when my hand was contractured. In March, 2013 I developed nodules in my left hand which were growing aggressively. After looking on this site I realized RT might be better than waiting for surgery.
I called Dr. Herman at OU and went in for treatment the 26th of July. He is a great person, very knowledgeable, and has one on the best staffs I have ever seen. He treated both hands and the left foot. Will the RT work? We will see. He says he has a very good success rate if you treat it early. I had no contracture in the left hand and very little in the right hand.

03.08.13 19:00
spanishbuddha 

Administrator

03.08.13 19:00
spanishbuddha 

Administrator

Re: 2 years after RT update on my severe LD

jbrya:
Hi Everyone,
I am a 59 year old male, who lives in OKC, OK. I developed DD at 55. It started with nodules in the right hand and small nodules in my left foot. I went to see my family doctor in September, 2012 at age 58. He sent me to a hand surgeon who said to come back when my hand was contractured. In March, 2013 I developed nodules in my left hand which were growing aggressively. After looking on this site I realized RT might be better than waiting for surgery.
I called Dr. Herman at OU and went in for treatment the 26th of July. He is a great person, very knowledgeable, and has one on the best staffs I have ever seen. He treated both hands and the left foot. Will the RT work? We will see. He says he has a very good success rate if you treat it early. I had no contracture in the left hand and very little in the right hand.
Welcome jbrya, thanks for sharing. Please return in the future and tell us your outcome and any other insights you have on your journey.

24.08.13 18:37
Penny 
24.08.13 18:37
Penny 
Re: 2 years after RT update on my severe LD

I have had dupuytrens for 30 years and my Ledderhose just started 2.5 years ago.
An update on my feet. I had radiation on my ledderhose in 2011 and have had pain increasing since that time. At this time I am in a wheelchair at least part of the day. I can be up for an hour or two and if it is longer when I get off my feet the pain is intense. My pain is not as much in the nodules themselves, but more an all over feeling of pain and mostly in the balls of my feet. There is also a feeling of an extreme thickening of the balls of my feet. When Dr Seegenschmiedt did the radiation he extended my zone up into the base of my toes because I had a place that felt like it could be a nodule there, even though he had never seen that before. So my question is do you think this pain is only Ledderhose or should I examine an additional cause and if so where would I go first. A podiatrist or what??? I am now in the Dallas area—does anyone know of an experienced doctor in this area with Ledderhose?

Update on my dupuytren:
I am also the one who had a sliver and an infection last year in the nodule on my hand. That was taken care of by surgery (there was no other option, due to the infection) The doctor did not remove all the dupuytren for fear of spreading the infection, but so far I have not had any complications or new nodules and am very pleased with the outcome. Thanks for your advice.

05.10.13 01:27
Jolene 
05.10.13 01:27
Jolene 
Re: 2 years after RT update on my severe LD

Hello,

Thanks for this information.

I have had LD in one foot for 18 months. Just finished round 2 of RT on the left foot. Since RT I have been having MAJOR pain. First I thought a new nodule on the bottom the foot was forming. Went to podiatrist for ultra-scan. No New nodules. Thank you Jesus.

I was told possible tarsal Tunnel. This effects the tibia nerve (in the ankle) which brings with it the sensation of pins & needled, tingle sensation in toes, heel, and bottom of the foot. This is the sensation I have Always had since diagnosed with LD. Now the pain is intense and non stop. The podiatist sent me to a neeurologist. I am now on gabadentin. This has helped 80% of the time. I am only oln day 3. Next week I go for nerve study & EMG test. However now my hands are swollen and I am concern this medication can cause the DD & LD to progress.

if anyone knows will gabadentin have that effect?

05.10.13 03:46
nanshands 
05.10.13 03:46
nanshands 
Re: 2 years after RT update on my severe LD

Hey Drumhead and Jbrya,

Can you confirm for me what Dr. Herman's protocol was for your treatments? 30GY's total or 21GY's?

Thank you for your posts!

Nan

19.12.13 16:32
Bleu 
19.12.13 16:32
Bleu 
Re: 2 years after RT update on my severe LD

Christl:
What about Cryosurgery? There is talk about that. Have you two considered that? I know it is also a temporary fix, seems everything is, but it could reduce the pain and make walking possible again, so I read. There is a Dr. Spilken in NJ who does that. He was also at the Dupuytren convention in Miami couple of years ago. Seems there is no talk about that on our forum, so not many people are doing it, I assume.
What about some pain cream for the feet? Is there such a thing? Several people reported putting lidocain cream on their feet, it numbs the pain and makes walking possible.
Good Luck to both of you and all of us.


Christl

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