Who here has Dupuytren' disease in their hands?
Posted , 3 users are following.
I do. I have a history of it. Hand surgery was done on my left hand by the Army in 1995. They removed small lumps in the palm below the pinky. They did local with Bier block. Hand recovered fine.
Now, I have a bad contracture in the same hand. Severe lumpiness near the pinky bottom joint. In 2018, the VA did steroid injections. It straightened the pinky but the palm was still lumpy.
Over the past 6 months my pinky started to curl up again. It's so badly curled now I can't play the piano or even put on a glove. I saw a VA surgeon in Oklahoma City yesterday at the VAMC. He didn't seem like he knew what he was doing. His name is Dr. Ali and he had a strong accent I couldn't understand. I told the VA I wanted another opinion from a hand surgeon there. I am now scheduled to see Dr. Bond there on the 25th of May while my poor hand continues to suffer. I told the ortho surgery nurse there that I wanted to consult with an anesthesia specialist before the surgery. I don't want GA if it can be avoided. People die under that stuff. It's a hand, not a heart or a liver.
I will also tell the anesthesia specialist that I'm allergic to both lidocaine and epinephrine because I know by dental experience with those drugs.
I will tell them that I'm fine with carbocaine/mepivicaine. Carbo and the like doesn't give me chest paints, heart palpitations, throbbing pulsating head, trouble breathing, hot flashes and weird feelings in my head like the other drugs did.
The doctor that did the steroid injections on my hand three years ago used carbo for numbing and I was fine.
As a Veteran under the Mission Act I also have the option to have this surgery done by Care in the Community, and independent contractor like a Oklahoma University.
Have any Vets here had VA hand surgery with good outcomes? The Army seem too have done a good job 27 years ago.
Dr. Bond sounds like an American without an accent by the sound of his last name. I should communicate better with him. Hopefully he will sound optimistic. Also, this Dr. Ali couldn't guarantee that my pinky would be able to be extended perfectly straight gain after the operation. He was also talking about taking a skin graft from my wrist. I told him I want a graft avoided if all possible. I don't want to be a guinea pig for a VA butcher shop. The army did no damn graft 27 years ago.
1 like, 15 replies
barbara66703 JPrestonBailey
Edited
sounds like your looking for answers. there is no cure for dupuytrens but techinques to manage it.
i have had it in my rt hand for 12 years. do not have surgery on the hand it activates the disease.
a hand surgeon did surgery on my hand... what an idiot.... he knew the surgery would make it worse and after 6 weeks check up all my other fingers already were curling up in a fist . he said there is nothin else he can do . i went into surgery with only one pinky finger curl after surgery all my fingers had curled up into a tight fist and could not open any fingers.
these hand specials .... don't get me started...ugh...
after a year of research I learned about xiaflex or xiaplex injections. worked for me right away dissolves the cord tissue that pulls all the fingers into a fist. the tissue that curls the fingers is made up of the same tissue as scar tissue. it is approved by the FDA. it really works. also approved for Peyronie's disease. there is a lot of info on u toob..to watch...
look it up see what ya think. it's not for sisies... there is some pain involved but to be able to open all my fingers and use my rt hand again ... it was worth it. that was over 12 years ago and it has not closed up my fingers again.
With RT, radio therapy...the nodules and cords associated with Dupuytren's are irradiated either with X-rays or electrons. there's another thing to check out. couldnt find anyone 12 years ago who did that treatment in the US. its a treatment originally done in Germany by a German specialist. not doin that either...
i also have it in my feet it's called LedderHose same issue as duputrens. all these names are after the docs that discovered the disease .
well look at the bright side. this disease is also called Vikings disease and heredity. so that means we have some Viking - Northern European background in our families. probably from rowing all those viking ships for miles and miles .
JPrestonBailey barbara66703
Posted
The VA did the steroid injections three years ago and the finger was straighten back out and remained straight until about last November. This did not remove the lumps in my palm and at the base joint of the pinky. Only surgery can REMOVE this lumpy and stringy fascia, maybe. I can ask the VA about xiaplex injections. I had nasty armpit pain with the steroid injections and saw the ER about it.
barbara66703 JPrestonBailey
Posted
i forgot to mention there are also a special glove splints for duypuytrens check on line and xiaplex dissolves the lumps and facia tissue its basically scar tissue check out the process online..the lumps are eliminated. and its painful sounds like you had it done with arm pit pain you mentioned.thats xiaflex effects it lasts for as week or so..
JPrestonBailey barbara66703
Posted
Is there a drug to help with the armpit pain?
The doctor did numb my hand for the steroid shots. Steroid injections don't dissolve the lumps. I will call my VA Ortho doctor Monday and ask about this procedure. I saw some videos on it already. The had can be numbed too with this procedure with Novocain.
barbara66703 JPrestonBailey
Posted
I am not a doctor. I have no idea.
barbara66703 JPrestonBailey
Posted
Steroid injections may reduce the size of nodules early in the course of disease but are less effective in the later stages of Dupuytren's when more thickened tissue has formed. Steroid injections may help slow progression of the condition but won't help straighten your finger if you already have a contracture.
JPrestonBailey barbara66703
Posted
I consulted with my VA OT specialist at the VA Clinic in Lawton, OK this morning. I asked her about Xiaflex. She said it is a treatment option but it failed in many cases in her experience. I told her I had steroid injections for my Dupuytren's at the VAMC in Boise, ID back in 2019. She said I should check with that particular clinic to see what they actually injected. I went and got my medical records online for that time period. The doctor back then injected Xiaflex into my hand back then, indeed, it was not some other steroid as I thought. He did manipulate the finger the next day to straighten it out. The lumpy tissue never shrank, it just broke up. It just progressively got larger over time. Sometime last year my pinky started to curl up again. It's worse now than ever before. Xiaflex evidentially did not do much for me. I haver to see another VA ortho hand surgeon this coming May for a second opinion. I was told to also ask him about surgery alternatives including RT. My local OT/PT specialist said she was not familiar with RT. She said Veteran patients in her experience often have needed hand surgery following Xiaflex treatments.
barbara66703 JPrestonBailey
Edited
keep me posted on your next step . you might check into DC glove splints on line.
as clearly stated earlier there is no cure for dupuytrens.. only technique's to manage it.
JPrestonBailey barbara66703
Posted
I'm well aware of the "no cure" situation. I first experienced it in 1995 and hand surgery made it "seemingly perfect" for about 23 years. Hopefully the next surgery gives me a long interval without any trouble. I will tell my doctor I want a long-term management program for life on this. I just want to be able to use this hand again to play my piano. It's next to impossible to get a glove on this left hand now.
JPrestonBailey
Edited
I have enrolled in Dupuytrens research:
https://dupuytrens.org/
JPrestonBailey barbara66703
Edited
I just saw a VA hand surgeon named Dr. Bond at the Oklahoma City VAMC this morning. I heard nothing but horror stories from him. Possibility of fingers being amputated, how nerves and blood vessels wrap themselves around the chord/fascia tissue and how Xiaflex cause the contracture tissues, nerves and blood vessels to become all together. How the nerves and blood vessels become shortened in the pinky finger. My left finger is now bound at a 90 degree angle. There is a big chord connecting from the palm of my hand to the lowest joint of the pinky. I still have movement and full feeling in that pinky.
Three years ago I had a "steroids" injection to treat this contracture when it was not as severe. The doctor at the VAMC in Boise, Idaho successfully fully extended this pinky but there was still some lumps at the base of the pinky joining and in the palm below it. The left hand was fully functional and I could play my piano up until late last summer when the pinky started to close up again. Here is what I discovered last week. The VA medical center in Boise, Id. did not actually use "steroids injection" by Xiaflex. I did have pain in the left armpit for about a day, swollen limp node. I check my VA medical records and it was indeed Xiaflex used in march of 2019 to treat my contracture.
Should I just stick with repeated Xiaflex treatments as needed and say no to Doctor Butcher of the VA Ortho Surgery department? I was in the army and got out in 1995. Soldiers would often tell me how their surgeons just love to cut. Maybe some VA surgeons are just as carve-happy. I did have hand surgery in this same region in 1995. The army did the surgery under Bier block and the results were great. It was just small lumps they removed in the palm of my hand and there was little or no pinky bending back then, however.
This Dr. Bond claims that since I already had previous Xiaflex treatment, that hand surgery now would be very complicated and quite dicey according to him. He has even admitted to me that some of his patients have had finger amputations as an outcome to hand surgery. I am a male age 58 now and of northwestern European ancestry.
Yakahosubu JPrestonBailey
Posted
Given my experience with DC. if Xiaflex is not working, I would have them remove the Pinky if that makes life easier and eliminates pain. Problem with this disease, it always comes back to haunt you.
barbara66703 JPrestonBailey
Edited
Again a mention about the importance of the DC glove splint to wear nightly. I swear by them available online, and surgery can activate DC.
The decisions your asking about is only yours to make. It's your hand your life. Never could i ever advise anyone to do one thing or another regarding DC. Most of my opinons about surgery, xiaflex I have already put my experience in above posts for you to weigh in on .
Have you considered the latest treatmant ? Injection of the anti-TNF drug adalimumab into Dupuytren's disease nodules is supposedly effective in reducing nodule hardness and nodule size?
its a bio drug used as a TNF inhibitor for various autoimmune diseases. I receive the same effect just from daily gentle message.I will not use any bio drug . This in my opinion . This bio drug is a bump up drug by the manufacturer. I do not trust the FDA. In the various research articles I have read over the years there are different modifications for each advertised illness and there are many side effects that are far too serious for me to even consider.
I do not trust any surgeon due to previous experience or the newer hand specialist. They do not have enough experience to treat my hands or feet. I have not had any new serious complications in years.
Yakahosubu JPrestonBailey
Edited
I am 64, live in Ontario, Canada, also an avid motorcycle enthusiast along with typical other physical activities. I have had many health related surgeries over the years ranging from simple sutures for cuts, to a more extensive craniotomy. All ended with positive results and minor post surgery limitations... except ONE. Surgery to correct DupCon on my Left Hand Middle Finger.
This took place in Nov. 2022. My hopes were to have Xiaflex treatment performed, as was done 2 years earlier on the adjacent finger. That procedure was performed with a local anesthetic, and while a bit of discomfort for a couple of days, it healed very quickly and the results were great! Now, on to the next endeavour. The same surgeon informed me that sadly, the company was not longer supplying to Canada since demand was insignificant therefore, surgery was the only option. Foolishly, I did not research further options to having Xiaflex done elsewhere especially since I had private coverage. But, thinking that the finger surgery was not significant, I may as well "go with the flow". Big Mistake! Surgery with just a local anesthetic was done and it was much less invasive vs what I expected. The healing time was very good and the finger straightened almost as well as the Xiaflex finger. However, the unexpected side effect is frequent pain in knuckle are of the hand spreading to the three central fingers. I waken up during the night and try movement exercises to help the annoying pain. In the morning I will use a cold pack to see if that will work and often ask my wife to massage the hand. It almost seems that the invasive surgery initiated a miserable arthritic condition. Clenching my fist is still not possible and pain is felt when trying and also when opening my hand as hard as possible. Finger also shows swelling quite often.
So my comment is to avoid the surgery if at all possible. The Xiaflex was the way to go and apparently there is a newer treatment similar to Xiaflex that is even better. I am hoping that over the next months, things will get better and Motorcycling will be a key indicator. Just can't believe advancements are made for successful treatment, then we revert back to Jurassic methods!!
Good luck.
PS Sadly I can't take pain medication due to other health issues, so one just adapts!
barbara66703 Yakahosubu
Edited
great attitude.. keep it mobin.....