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Intro - what next?
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02/22/19 22:36
doctorann 
02/22/19 22:36
doctorann 
Re: Intro - what next? UPDATE

Hey folks...

It's been over a year and just want to give you an update. I've seen 6 orthopedists now and they pretty much all agree that this is a bad case, and a weird one. After my surgery in December 2017, the right ring finger continued to contract and is now at ~90 degrees. It is much worse than it was before surgery. Most of the time it doesn't hurt, but I can tell when it's going to get worse, because my whole hand will seize up. The right little finger is somewhat affected, but more just stiff.

I'm not a candidate for Xiaflex or NA because of how far the finger is bent, I have a lot of scar tissue, and apparently the extensor tendons on my right ring and little fingers are either ruptured or nearly ruptured and embedded in scar tissue. I had an ultrasound and the doctor, who does nothing but hand and foot ultrasounds, just couldn't get a good image.

I traveled to New Jersey and saw Dr. Pess last fall, and he said "maybe" Xiaflex would help, but he was reluctant to do it. He said I was not a candidate for NA.

Dr. Pess referred me to a better surgeon up here in Boston (Blazar), but he is as stumped as anyone. More surgery might or might not happen.

On the left hand front -- it's pretty stable. Dr. Blazar is supportive of RT, so I have an appointment with Dr. Delaney, a RO at MGH, in a couple of weeks. I saw him last year but just wasn't ready to have yet another thing done to my hands. I have a couple of small nodules on my palm, and one near my thumb.

I just had a left thumb trigger release done -- and wow, compared to the 2 trigger fingers, this one has been SO easy. I was awake for the surgery, which was a little weird, and came out with 2 stitches, probably no OT required, and as of now (2 weeks after surgery) very good healing. The surgeon wanted to do the release before RT, though he said he could wait until after, but it was getting bad enough that I just wanted it out of the way. **SO FAR** it has not set off the DD in my left hand.

I am still riding, and functioning more or less OK though there are a few things I just can't do, or have to be very careful about it. I changed the way I hold the reins when I ride, to put as little stress as possible on my DD fingers.

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02/23/19 10:11
spanishbuddha 

Administrator

02/23/19 10:11
spanishbuddha 

Administrator

Re: Intro - what next?

Thanks for sharing an update with us. Did you mean extensor tendons, as they are on the back of the hand and used to straighten fingers; why or how did they get damaged or embedded in scar tissue? Can the ring finger be straightened at all using gentle pressure with the other hand? The photo doesn’t clearly show a cord causing the contracture so maybe that is caused by a combination of scar tissue, cord, and tendon stricture, and this uncertainty is why there is doubt about surgery; surgery to do what? Just thinking aloud here based on a photo, and of course you should rely on your Dr. who can feel your hand, have diagnostic imaging (or not!) and explain what he thinks. I would imagine some finger release would help your day to day function, but given your history maybe get ready to have RT after any new surgery to see if that helps hold things as they are then if signs of a flare occur.

For your LH just be aware RT is most effective when there are active symptoms of some progression, aches, tingles, pains, new or growing nodules etc .

02/25/19 21:27
rockinroller 
02/25/19 21:27
rockinroller 
Re: Intro - what next?

My RH little finger went from 40 (2016) to over 90 degrees contracted last year and after 6 different consultations ranging from ortho surgeons to hand specialists I decided on Xiaflex. One of the orthos said he wouldn't touch my little finger--either with Xiaflex or surgery--also due to the extreme contracture and the fact that the little finger is occupied by the most concentrated system of tendons and nerves, etc. I contracted with a Detroit area hand surgeon who was one of the top administrators of Xiaflex in Michigan (they post the list on the Xiaflex site), and submitted to two procedures--one to have a vial injected into the upper palm region below the ring and middle fingers and about 6 weeks later a 2nd vial, directly into the little finger. That was last August. To date my little finger is approximately 95% extended with only a bit of stiffness keeping me from giving it a 100% rating. The ring finger (also contracted, but not as bad) is totally normal and there are no nodules or cords in the upper palm area any more. The procedure is painful and expensive (Medicare covers "80%" of the street cost for each vial, but it still cost me over $2000 for the two sessions, out of pocket, and that's with an Advantage plan in addition!). But in retrospect, I'll do it again if my other hand's beginning signs of DD progress to a similar level.

Edited 02/25/19 21:28

02/26/19 17:28
doctorann 
02/26/19 17:28
doctorann 
Re: Intro - what next?

spanishbuddha:
Thanks for sharing an update with us. Did you mean extensor tendons, as they are on the back of the hand and used to straighten fingers; why or how did they get damaged or embedded in scar tissue? Can the ring finger be straightened at all using gentle pressure with the other hand? The photo doesn’t clearly show a cord causing the contracture so maybe that is caused by a combination of scar tissue, cord, and tendon stricture, and this uncertainty is why there is doubt about surgery; surgery to do what? Just thinking aloud here based on a photo, and of course you should rely on your Dr. who can feel your hand, have diagnostic imaging (or not!) and explain what he thinks. I would imagine some finger release would help your day to day function, but given your history maybe get ready to have RT after any new surgery to see if that helps hold things as they are then if signs of a flare occur.

For your LH just be aware RT is most effective when there are active symptoms of some progression, aches, tingles, pains, new or growing nodules etc .

You are right; I meant the flexor tendons! The extensors appear to be fine, although undoubtedly affected by being stretched for so long; it's the flexors (on the inside of the hand) that are so embedded in scar tissue that it *looks* like they are possibly ruptured -- this was determined with diagnostic ultrasound in December. it is a known but rare side effect of trigger release *and* of fasciectomy.

The little finger cannot be straightened further with pressure at this point. All its joints can be flexed a little with pressure.

The cord was visible before the December 2017 surgery, but is now buried in scar tissue.

I do think my surgeon is reluctant to do further surgery on it, because we just don't know what is going on in there. Maybe an MRI would show more??? He could remove the scar tissue and permanently fuse the PIP joint, but probably mess up the tendons even more in the process, and with all this going on as well as my reaction to surgery, tendon grafts are out of the question.

I have an appointment with him this afternoon to discuss things further and for him to check how the left thumb is healing after the trigger release. It does not appear to have caused the left hand DD to flare, but I'm only 18 days post-surgery at this point. I won't mess with the left hand until there is a clear reason to do so.

If I had to do it over again, I'd have found a doctor to do NA or Xiaflex as soon as we knew it was DC rather than a temporary thing caused by surgery on the adjacent finger. The RO I see actually recommended Xiaflex a year ago, but I was so wary of it that I procrastinated, and here I am. He likes to do RT within a week or a few weeks after Xiaflex.

Edited 02/26/19 17:29

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super-important   misunderstanding   contracted   Xiaflex   surgery-recurrence-extension   procrastinated   contracture   surgeon   because   trigger   spanishbuddha   fingers   administrators   finger--either   radiotherapy   procedures--one   aggressive   straightened   surgery   dermofasciectomy