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6 weeks post open fasciectomy
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05/09/2014 11:18
zinkadoodle 
05/09/2014 11:18
zinkadoodle 
Re: 6 weeks post open fasciectomy

callie:
Diane,

That is interesting. My surgery was 12 years ago and the results were perfect and then last year my other hand started to be affected. I have always thought that I would have surgery again if needed rather than trying the short term fixes given how I responded to surgery. Then again, certainly all of us know that there are no guarantees with any procedure. And, I had very little pain with the surgery.


Callie, we could be sisters!!!

~~ Diane

05/09/2014 11:54
AnneD 
05/09/2014 11:54
AnneD 
Re: 6 weeks post open fasciectomy

Diane I hope you get back on here after surgery and let us know how it goes. I'll pray your surgeon gets it all and spares your nerves from damage. You should have a nice hand by Christmas! Are you going to the same surgeon as before?

05/09/2014 15:57
zinkadoodle 
05/09/2014 15:57
zinkadoodle 
Re: 6 weeks post open fasciectomy

It's not going to be the same surgeon. I kind of wish it was, because he did such a fabulous job. But, he no longer takes my insurance, and I cannot afford the costs of an out of network provider. So, I found a new surgeon who I have a lot of confidence in. He seems wonderful and competent and .... well, you know. He's got good reviews, so that helps. And, DD is one of his specialties.

I will definitely keep you all posted. Goddess knows, I'll need the moral support. It's a tough surgery, tough recovery, and on my dominant hand. I look forward to being able to spread my fingers again. My ring and middle fingers are almost overlapping because their stuck in such a tight position.

~~ Diane

05/09/2014 16:56
pia2some 
05/09/2014 16:56
pia2some 
Re: 6 weeks post open fasciectomy

Diane,

I hope this surgery goes as well as the first and that the outcome is just as good.

My surgery last fall was on my right hand which is my dominant hand. I know how you feel going into surgery knowing that your dominant hand is going to be out of commission for a while. It is scary. I wish I could give you a good report on my outcome, but I can't. I, too, had Xiaflex in the right hand and it seemed to create an explosion of new nodules and cords within a few months. We did everything possible in OT to give my hand the best chance of a full recovery but it just wasn't meant to be.

One thing I did like was the Cica gel sheets. My OT really recommends them to help with scarring. I bought mine from Amazon (it was around $45) and it was more than enough to last me months. We cut into into strips and placed it on the incisions and then wrapped my hand to hold it in place. You have to wait for the incisions to heal, but it did seem to help prevent scarring.

I need to have NA done on my left hand but I'm just not ready to have something else done. Plus, we need to save up some money to have it done. My right hand is pretty useless now and my only option for it is the dermofasciectomy. My surgeon does not want to do that. He wants me to have a very experienced plastic surgeon who specializes in hands to do it. Obviously I am not ready for that at all.

Anyway, I'm hoping for the best for you! Keep us posted on your surgery and recovery.

~ dawn

05/09/2014 17:45
callie 
05/09/2014 17:45
callie 
Re: 6 weeks post open fasciectomy

Dawn,

You said something that was interesting. You said, "He wants me to have a very experienced plastic surgeon who specializes in hands to do it."

What kind of a surgeon did you have for your hand? My surgeon was not a plastic surgeon, but a hand surgeon who operated on nothing but the hand, or "everything below the wrist". He was very good. He did say that Dupuytren's surgery was one of the easier surgeries for him to do.

05/09/2014 18:26
pia2some 
05/09/2014 18:26
pia2some 
Re: 6 weeks post open fasciectomy

callie:
Dawn,

You said something that was interesting. You said, "He wants me to have a very experienced plastic surgeon who specializes in hands to do it."

What kind of a surgeon did you have for your hand? My surgeon was not a plastic surgeon, but a hand surgeon who operated on nothing but the hand, or "everything below the wrist". He was very good. He did say that Dupuytren's surgery was one of the easier surgeries for him to do.

My surgeon is hand surgeon and does specialize in DC. But the dermofasciectomy that I need is going to require a lot of skin grafting. Because of the horrific flare of the disease after my surgery, my surgeon feels that using a plastic surgeon to do the grafting is the wisest option. Since dermofasciectomies are not done very often, my surgeon doesn't have a ton of experience in doing them. Whereas as plastic surgeon who specializes in hands is going to have more experience in that area.

There is a plastic surgeon in Atlanta who is a hand specialist and who does this surgery. He would be the first one we'd consult with. It is just a very specialized surgery and since my DC is so aggressive, we need to most experienced surgeon doing the dermofasciectomy ... IF I should decide to go that route.

~ dawn

05/10/2014 00:28
zinkadoodle 
05/10/2014 00:28
zinkadoodle 
Re: 6 weeks post open fasciectomy

The doc who fixed my left hand 12 years ago was a plastic surgeon. He was recommended by my rheumatologist. I had so much pain in my hand, and the surgeon admitted to me that he wasn't even sure the fasciectomy would alleviate the pain, though I didn't have too much contracture, maybe 20 degrees on my ring finger MP, but my rheumy talked him into it, a neurologist agreed, my GP said go for it, and I went along. I was in so much pain that I would have done anything. That surgeon was excellent. But, he no longer takes insurance, so that's that. Now, I'm seeing an orthopod who specializes in DD. The surgeon removed the nodules and cords, and did a tendon sheath release on my ring and middle fingers. The recovery was tough, but I was "cured." I think one of the reasons I had such good results was that the contraction wasn't too advanced.

This time around, I have much more contraction, less pain (more intermittent), and I'm more afraid of doing nothing. Particularly because my middle finger is contracting now. The large nodule on my ring PIP goes back and fourth between crazy making itching to actual pain. It has to go. The nodule that formed after the Xiaflex in the palm of my hand was severely painful, but the pain has subsided significantly, though it too is intermittent. That nodule has to go. I can no longer spread my fingers, and that is really affecting my daily life. That has to be fixed. And, of course, my curled hand needs to be straightened. I've got faith in this orthopod. He da man!!!

~~ Diane

05/10/2014 01:04
Tusk 
05/10/2014 01:04
Tusk 
Re: 6 weeks post open fasciectomy

I've seen two doctors who had certificates for hand surgery and plastic surgery.

http://medicine.stonybrookmedicine.edu/s...rycertification

05/12/2014 00:28
moondanc 
05/12/2014 00:28
moondanc 
Re: 6 weeks post open fasciectomy

zinkadoodle:
I stated something stupid, to the effect that if I do nothing, I'll end up having fingers lopped off. He said that he had to do that with a patient a few weeks ago, because of Xiaflex complications, but reassured me that it is very, very rare for that to happen. I know that it is, but it's not unprecedented. So, I'm going forward. Hopefully, I'll see the same success that I have experienced on my left hand so long ago


~~ Diane

Whoa!! amputation because of Xiaflex complications? Was the doc any more specific? I'm very curious. I'm another one of those that absolutely HATES Xiaflex and it definitely made my disease much, much, much more aggressive.

another Diane

05/12/2014 10:04
zinkadoodle 
05/12/2014 10:04
zinkadoodle 
Re: 6 weeks post open fasciectomy

It was my understanding that the complication of the Xiaflex had to do with administering it incorrectly, wherein the surrounding collagen based tissues were also dissolved, including tendons and ligaments. Also, the DC was extremely advanced, but the Xiaflex just rendered the fingers totally useless and an impediment to everyday function, beyond the misery of DC itself. I assumed he was talking about the amputation, but admittedly, I wasn't paying a ton of attention, as I was worried about my hand too much. He did stress how rare it is, and it's one of the complications of Xiaflex that we agree to when we sign up for that drug. But, docs are supposed to be well trained, wherein they limit, very very carefully, how much Xiaflex goes into what structure. Apparently, one doc missed the memo, I guess. Or maybe, the patient decided to just move his hand excessively after injections (which I find hard to believe, given how painful and swollen my hand was immediately after the series of injections), wherein the Xiaflex got "squeezed" to outside of the cords. I dunno. I didn't pursue the discussion.

What did concern me, however, was that the resulting scar tissue from the Xiaflex in my hand will complicate the surgery. My doc compared it to a "bomb" going off in my hand. He scheduled me for a 3-hour procedure , because he will have to tease the cords and scarring away from the nerves and other healthy structures.

Changing the subject a bit, my doc also mentioned that Drs. Badalamente and Hurst of Stony Brook, are now in Phase whatever trials of using Xiaflex for adhesive capsulities (frozen shoulder). I can't even imagine the additional misery caused by injecting Xiaflex into an already horrifically inflamed shoulder. I've had AC, and it is one of the worst six months of pure painful misery I've ever experienced, though the adhesions lasted well beyond that time frame (I still cannot raise my left arm above 90 degrees from the side). At least, DC isn't that kind of painful, wherein it makes it a bit easier to think about Xiaflex. I think Badalamente and Hurst will find that Xiaflex will eventually be pulled from the market, as its effectiveness is no better than NA, and the side effects are much worse, not to mention the ridiculous expense of that drug. I hate it. NEVER AGAIN......


~~ Diane

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