Saturday, February 25, 2012

Addressing my Dupuytren's

Dupuytren's Contracture
c/o Janet's hands
101 Viking Lane,
Diabetes, CA  12121

Dear Mr. Dupuytren's:

It has come to our attention that you have been spending an inordinate period of time occupying Janet's hands.  We understand that you have aggressively progressed especially on her right palm, but that you have extensive expansion plans to move to the left and perhaps involve multiple finger distortions.

We respectfully request that you cease and desist immediately, or we will have to take more drastic measures to control your occupancy.  Obviously the use of vitamin E, DMSO, or even Lugol's solution (iodine) has not loosened your hold on Janet's hands.  You heedlessly move around converting collagen type I into collagen type III. This is a very bad idea, as type III is less supple and will accumulate and contract over time.

We have plans for a counter attack in one week.  Unless you opt to move on your own, we will be forced to wield a large needle and start nicking at your most beloved cords of contracture.  We have tried reason with you in the past with no response. Now it is time to bring in the big guns and force your hand (so to speak).

Regretfully yours,
Janet's Brain, Body, and Soul

Anyone who would like more info about Dupuytren's can Google or check out Wikipedia. But basically, I've had these nodules on my hands for several years, and now they've begun to turn into stiff cords. It's pretty aggressive I guess and on both hands, but so far I have one contracture that is getting fairly bad.  Cause is pretty much unknown, but there is a genetic component, and it is more common in people with Scandinavian heritage and Viking in their blood (ha! I would have made a fairly decent Viking I think).  It's also associated with other risk factors like being a man (not the first time I've had something that only men are supposed to get), diabetes, and liver fibrosis.  So probably my genes and my diabetes are messing with me.

No big surprise.

Here are a couple of photos of my right hand to illustrate the problem:

Really, there hasn't been too much functional loss except for yoga poses that require palms flat to the ground. But it's gotten worse in the past couple of years and now I do get irritated by not being able to straighten my hand and I know it will only get worse if I don't do something about it.

So, I met with a new hand specialist - I did a lot of research and had talked to another "hand guy" in Oakland. But the orthopedic surgeon types want to do surgery to remove the affected tissue. And I do not want to have the most radical treatment first when there are less invasive approaches to try first. 

I have an appointment to get a "Percutaneous Needle Fasciotomy", also called a "Needle Aponeurotomy". It sounds scary I guess, but really it is a series of nicks along the cord done with a needle that allow manipulation of the hand to straighten it out.  There isn't any big incision, and the recovery time is very short (a few days vs. a few weeks with surgery). The rate of recurrence isn't any worse than the track record of surgery either, but there is a likelihood that it will recur - and I'll probably have to have my left hand worked on pretty soon (earlier would be better than I've waited for the right hand).  Also, if after a few months it seems not 100% where I'd like it, this doc will go in with an even newer treatment of collagenase injections (Xiaflex).  His approach is a little different than the other doctor I talked to in this regard too - the other doctor didn't want to consider it and was somewhat disparaging.  My new hand specialist is a plastic surgeon, and said that he uses based on learnings from using Botox - i.e. he spreads the injections around to "poke holes" in the cords rather than squirting it all in one place.

I'm pretty happy with this plan and I'm excited to see how well the NA will work on my right hand. Keep you fingers crossed for me (because I really can't anymore, at least on the right hand)!

Just a quick update on my internal issues - stomach feels pretty good, still taking the trial medication without any side effects, working on blood glucose control using the CGM (continuous glucose monitoring), and I'm getting all caught up on my maintenance schedule in general (eye exam, mammogram, standard blood tests, etc.).  Also still seeing Dr. Who for acupuncture - I don't know whether it's making a big difference or not, but I still want to stack as many cards in my deck as possible for good health.

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