Dupuytren's contracture

[morgan]

I have a relatively early case of Dupuytren's contracture, and am trying to figure out how to proceed with it.

If any cafe members have or know someone who has Dupuytren's contracture and has undergone any treatment or therapy, I would very much like to hear your story.

For those who don't know, Dupuytren's contracture is an abnormal thickening of tough tissue (fibrous layer) underneath the skin of the palm and fingers. Little lumps form in your palm and wrap around the tendons to your ring and little fingers, eventually causing the fingers to contract and curl. Its not painful but in advanced cases you lose much of the use of those two fingers, plus general mobility in your hand. I have two siblings who have undergone surgery for it; in my sister's case it also affected her thumb. Fortunately, mine has to date only manifested itself in my pick hand.

[tree]

If you haven't already, ask around and get a recommendation for a good hand surgeon in your area.

It sounds as if you may already be at this stage, if so, I have no experience that would bear on your situation. I have had hand surgery, though, and it was a bigger deal than I would have thought. There's a lot going on in your hands, and you want to make sure your doctor is very good.

[R. Kane]

I have had it in both hands, I've had surgery, and its come back again, 8 or 9 years later, in my left. If you want my advice, avoid the surgery at all costs. I am scheduled to have the xiaflex enzyme treatment in January. Look up xiaflex and find a hand specialist who is treating with it.

PM me if you want more.

[fatt-dad]

Now I have a name for my hand condition! I prefer "Viking Syndrome" however - ha.

I guess for me, it's not enough of a bother to mess with. Next time I hit a clam, I'm blaming my ansestors, that's for sure!

f-d

[pgfoto]

Morgan,
I too have Dupuytren's. Mine is in my left (fingering) hand. The disease first showed up as a small bump on my palm under my ring finger when I was around 48 years old. It really freaked me out.

I'm not surprised to hear that others in your family have Dupuytren's. As I found out Dupuytren's is genetic... My father passed many years ago and there is no one left on his side to ask, no one on my mothers side had a clue about the disease.

I went to see a hand surgeon and was told that there isn't much that can be done as far as permanent treatment. I'm now 53 and the thickening has spread both laterally and towards my wrist. I do feel some pain as the tissue thickens and pushes up against the muscles and nerves and skin of the palm. The pain is in the form of a burning sensation and sensitivity to pressure. Also, I can't extend my middle and ring finger as far as my index finger and pinkey( maybe a 10-15 degree difference). If you've ever sprained a finger playing a sport you might understand the sensation of the limited movement and tightness in the palm.

That being said, I don't think it's hurt my playing....yet. The fingers will curl towards the fretboard and the movement of lifting and pressing on the strings still works just fine. I can stretch the affected digits by pulling them back slowly as far as they will go and then repeating..that seems to help.

I've been thinking about visiting with the hand specialist again. From what I've seen online, there are a few new procedures to relieve the thickening in the palm. However my specialist pointed out that the relief is most likely not guaranteed or permanent.

The dilemma is, I would hate to have a procedure make matters worse by affecting feeling in my fretting fingers etc.

I wish I had better news. If you find out anything please let me know.
Phil Goldman
pgmando@gmail.com

[pgfoto]

Nice to know there are others out there... I'll check out the xiaflex treatment!
Thanks R.Kane

[morgan]

I play mandolin with my general practitioner doc and he looked up info for me on one of his reference sites. My understanding is that whatever you do, it will likely come back. But I would like to knock it back. Collagen or steriod injections are sometimes used early. My sister's surgeon said that he has had success with the collagen injections in early cases.I found in a web search that there is something called Needle Aponeurotomy that was developed in France, in which the doc basically teases apart the lumps with a needle. I don't think that procedure was mentioned in the reference document.

In regard to some of the other comments: I'm 52 and it came on in the last year or so. Because of the family history, it didn't freak me out when it did, but it wasn't happy event. I'm part Irish and my sister says its the Danish blood in the Irish that gave it to us, but who knows. It's apparently genetic.

My sister's case was particularly bad, and the surgery helped quite a bit, but her hand is still not entirely right. I'd like to do something before I have to go that route.

R Kane, my daughter is throwing me off the computer, but I'll be in touch. Thanks to everyone for their replies.

[fatt-dad]

anybody have a pronounceation guide?

f-d

[R. Kane]

Doopitrenz. Named for the 1800s French surgeon who first reported it. Hereditary, but exacerbated by autoimmune diseases (like diabetes), alcohol (the Irish and French connections, maybe), and maybe some other things.

Uponurotomy. Jabbing a syringe into the lump enough times that it breaks apart the tissue under the skin. Can cause even more damage. I met that french doctor that developed the technique about 9 years ago, watched him treat someone, and opted for surgery.

Surgery was the most often prescribed treatment, but it sports a very very long recovery, even if "successful", and the complications can range from numbness to infections to trigger finger (had all). If you go this route, you want one of those top .1% surgeons with a lot of experience in this operation. Frankly, I think every surgeon is now chafing to try the xiaflex therapy to avoid the recovery and risks.

Xiaflex is an enzyme that is injected into the fascia that dissolves/weakens the tissue (cords) that cause the contracture and lumps. The cord is then "snapped" a day or two later (sounds like fun). I've spoken with 2 people who were guinea pigs for the testing of the procedure, and its a no-brainer. No nerve damage, no healing scars, no physical therapy, and immediate relief. It should get FDA approval in the next month.

But Dupuytrens will always come back. To delay onset, spend as much time stretching your fingers away from the direction of the contracture as you do playing/clenching. Oh, and stop drinking and don't get an autoimmune disease. (I used to wake up with clenched fists, so I built splints that I wore at night (fun).) Correct when it affects your ability to do something important, like a pushup, or a G chop chord, or shake hands with a stranger.

I wish I didn't have so much firsthand (pun) experience, but I hope this is helpful to someone.

[Harrmob]

I was told that it was an abnormality in the formation of collagen (scar tissue) in the hands b/c of my descendents. I found out I had dupuytrens when I snapped the tendon in my left index finger (during a mandolin solo to Prince's "When Doves Cry"). The Doc found my flexor tendon retracted in the palm of my hand and later said I had dupuytrens. (FYI, I now have permanent stitches holding my tendons together and still pickin like no tomorrow.) Was dupuytrens the cause of my tendon snapping? I don't know, but the chords are there only in my left hand (currently). Please keep us posted on the xiaflex treatment as I know a lot of people are interested in it.

[R. Kane]

Since the cords are collegen-based, injecting more collagen seems the wrong approach.

[AZStu]

Since the cords are collegen-based, injecting more collagen seems the wrong approach.

Xiaflex is a type of enzyme that is called a collagenase. It breaks down collagen biochemically. Dupuytren's contracture is caused by an abnormal accumulation of collagen in the hand. In theory, the enzyme collagenase should break down the abnormal tissue and release the tendons into a more normal position. I would be somewhat concerned whether this activity would weaken the tendons too, leading to rupture in the future. I'm sure they are looking at this in the studies and as with all procedures, is probably dependent on the skill and experience of the surgeon.

I had surgery for Dupuytren's of my right hand about 4 years ago. Fortunately, it was only affecting my 5th finger. I decided to have surgery because every time I shook somebody's hand, my bent 5th finger would crash into their hand. I was in a splint for 1 1/2 to 2 weeks, but after that was not restricted. I wasn't playing mandolin yet, but could flat and fingerpick the guitar without a problem.

[AZStu]

I have a relatively early case of Dupuytren's contracture, and am trying to figure out how to proceed with it.

If it's mild, I wouldn't do anything yet. Xiaflex (collagenase) may prove to be as effective and less invasive than surgery. I have it mildly in my left hand and will wait as long as is feasible and assume they will get better with the injections over time.

It's also bad for a Packer fan to have a Viking disease...

[Mandoviol]

If I'm not mistaken, Botox injections can help with this sort of thing as well; a couple of years ago, National Geographic ran a set of articles on poisons and how they can be beneficial/harmful to people. One article was about a pianist who had something similar happen to his hand; it curled up into almost a clawlike shape and was hard to move. His doctor told him to have Botox injections in his hand; when he got them, his hand limbered up and he was able to play until he needed his next round of injections.

I think his problem may have been more muscular as opposed to having collagen build-up in his hand, so Botox might not be the way to go here, but who knows? There might be a connection...

[Bob A]

Injecting a collagen-dissolving enzyme into the hand is serious business. Too much, and you end up dissolving more tissue than you'd planned for, which could leave you worse off than before.

[morgan]

I suspect that the collagen injections my sister referred to were actually colleganase injections.

My brother, who also had the Dupuytren's surgery, is a research biologist at Mass General. I asked him about the Xiaflex, and he told me that xiaflex is a crude enzyme preparation that breaks down collagen to weaken the cord. Then they "manipulate" the finger to break the cords. Many other hand tissues including tendons have collagen - so they are using a fairly non-specific tool and counting on good aim or differential sensitivity to get the specificity they want. So, the doc needs to be good at it. He also noted that that a study he looked at included two tendon ruptures,which were presumably the result of the collagenase weakening the tendon before manipulation, and which was a 10x higher rate than general results for surgery.

[Rockville847]

There is a new procedure for Dupuytren's. It's is called needle aponevrotomy. It is much less invasive than traditional surgery and much cheaper. I had it done last week and I will be able to start using my hand in about two weeks instead of months. I was skeptical about this at first but I can already feel a difference. I will be back playing in no time. There is a doctor in Idaho doing this procedure. His name is David Kline. He has a web site. Dr. Kline said he has done many well known musicians. He also said there are a handful of docs in the US dong this procedure.

[Bruce Evans]

Include me among the inflicted. I first noticed a lump in my left palm about a year ago at age 59 and went to a plastic surgeon. He asked me if my family name, Evans, was English. It is Welch. He diagnosed the lump as Dupuytren's contracture, stating that it was most common among people of northern European ancestry. He told me about surgery and its non-permanent results. I now have a very small second lump next to the first. So far they are just lumps and have not afected my playing - for better or worse. :) As it developed much later in me, I'm hoping I can make it to the end of my playing days without surgery.

BTW, Happy Birthday to me. 60 years old today, at 1:46PM to be precise.

[morgan]

Rockville -

How far along was your case, and how much did the procedure cost? Please let us know how you are faring in a few weeks.

Thanks

And Bruce Evans, happy birthday. I'm part Welsh also as you probably guessed from (Cedwyn) Morgan. Maybe its from that side and not the Irish

[Rockville847]

My left hand was bound up pretty good. My little, ring and index fingers were the worst. My little and ring fingers were almost at a 90 degree permanent bend. This doctor has Dupuyten's so he knows the condition. It been almost 2 weeks now. My hand is already much more flexible. There isn't a lot of pain now. It costs around $2800.00 and your awake for the whole thing. You can even watch if you want to. By the way I am of Welsh, Norman decent as well. I will keep you informed.

[mandogart]

I have 1st stage duputryn's contracture in my pick and bowing hand. It appeared about 5 years ago as a thickening in palm as described by others in this post. My ring finger is about 30 degrees contracted and has not made any difference in picking or bowing...although a firm handshake hurts.

Problems, however, can arise by not addressing the contracture even when not problematic. Two weeks ago I took a minor slip on a patch of ice. As I instinctively broke my fall with my affected (right) hand, the contracted finger took the first force of the fall and dislocated (could have as easily snapped) my finger into a right angle turn at the knuckle.

A healthy shot of morphine at the local hospital led to a near painless reset. Rehab is taped fingers - I can still play! - However, the greater question looms...What happens the next time I slip or trip?

I have decided to go ahead and have either the surgery or the NA procedure. My understanding is that Xiaflex has still not been finally approved by FDA in this country yet.

So, even though the contracture may not affect your playing, it may directly lead to problems that do.

[man dough nollij]

I've been having some weird problems with my hands, and after a little research, it looks like this is what I have. I woke up one morning feeling like my left hand had been slammed in a car door. I think I may have slept on it funny, or done something to stretch out the tendon going to the middle finger. It hurt pretty bad for about a week, and I started getting lumps on that tendon, right in the middle of my palm. I'm sure it's on that tendon, because if I press on those lumps, it curls up my finger. I started feeling around in my tendons, and discovered that I have the same thing (to a lesser extent) on the ring finger of my right hand. I haven't been playing much at all because of the new left hand one. It's not painful, but it's irritating, like an itchy scar. I'm going to get it checked out, but it sounds like a classic case, except for the pain at the beginning. The internet is wonderful-- I can find out more than my doctor knows, even before I make an appointment. Doctors have their role in health care, but I believe in being informed and taking care of myself, too. BTW, Welsh here, too.

[Rockville847]

An update on the condition of my left hand. It quickly improved to the point where I was able to easily flatten out my hand on a flat surface. The pain was reduced to almost nothing. It started bothering me some awhile back and I considered going in for another surgery just to try and stay ahead of it. About 2 1/2 months ago I was bitten on my left hand by a Wolf Spider. There were 3 bites, two between my ring and little finger and one on my palm about 1" below my middle finger. I developed a HUGE blister on my palm. My hand was the size of a boxing glove and the pain,"WOW". By the time I got to the doctor my hand was real mess. Without all the gory details the doc said if I had waited one more day I would have likely lost my hand. (probably would have improved my playing) After surgeries to get rid of necrotic tissue and several rounds of antibiotics for infections that ensued my hand has almost healed. I still have neurological problems but I think they have actually improved my sanity. Mandoviol mentioned poisons being used for medical procedures. I sure wouldn't recommend Wolf Spider poison therapy to anyone as this was one of the most painful things I have ever gone through. Having said that, my hand has improved significantly since and the bite has almost healed. Could be coincidence but who knows. For now, the next surgery is on hold and I am playing again.

[Ivan Kelsall]

Lee - It sounds to me like you have "Trigger finger" (Tenosynovitis). That's when the tendons in your finger(s) have swellings on them which prevents them passing easily throught the small loops of cartilage that hold them in place. I have it mildly in both hands & had an op.8 years or so ago on my left hand ring finger & thumb to remove the problem.
I currently have it in my left hand middle finger,but the use of an anti-inflamatory gel (Piroxicam) has helped greatly in reducing the swelling on the tendon. A steroid injection is on the cards for me if it really begins to give me problems.
DPS is a whole other ballgame however & a visit to the Docs. to start with is a must. My sister-in-law has it very badly in her left hand & is due for an operation to correct it as much as it can be. She left it too long before going to see her Doctor,so she's not got as good a chance of getting it totally sorted out,
Ivan63433

[man dough nollij]

I'm not looking to the Mandolin Cafe crowd for medical advice, but here's a pic of the bumps on my middle finger tendon.63454

[Ivan Kelsall]

Lee - That's exactly where the lumps in my left hand are.They've considerably reduced by the use of the anti-inflamatory gel that i use. If you flex your middle finger,do you feel the 'lumps' move & does your finger 'lock' & then 'click' (trigger) open ?. if so,then i'd say that you most definitely have trigger finger. Steroid injections can be successful in around 65% of cases,but if that fails,then surgery is the only (& permanent) way forward. The op.from start to finish is only about 20 minutes,but then you've got 3 months of recovery time ahead of you.The upside is,as i said,the results are permanent. A trip to the docs.is definitely the right move,
Ivan

[man dough nollij]

I've experienced trigger finger, I think, but not in that finger. Very seldom, I'll flex my hand back, and the index finger won't want to bend again. It's not painful, but it's freaky nad kind of scary. The bumpy tendon I have on my middle finger doesn't hurt or lock, but the bumps are prominent enough that they bug me when they hit the steering wheel or the dog leash (or the neck of my mandolin).

[Ivan Kelsall]

Lee - It's definitely worth a trip to your docs.,but,you could try an anti-inflamatory gel much as i did. The lumps are almost certainly an inflamation of some sort & could respond to an anti-inflamatory treatment in time,as mine did,& if you can take anti-inflamatory tablets or capsules,then they could help as well - but don't do both ,