| Another Dupuytren in town...needs help! |
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03/04/2015 22:33
Sherise 
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03/04/2015 22:33
Sherise
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Re: Another Dupuytren in town...needs help!
Alrighty... Second follow up...
More on the biologic called XIAFLEX injections used to treat my Dupuytrens Contracture.
Continued from my earlier post.
Back to doc for finger manipulation 3/2/15. Which is basically after the XIAFLEX enzymes has loosened the hardened build up collagan causing the fingers to curl.
My two fingers were curled closed pinky and four finger almost. The doc numbed my hand and after a week from the XIAFLEX injection the fingers opened while he pulled lightly. Fingers are not totally flat yet. Still in a splint they are straight enough to fit on a splint.... and ready for PT. Great!
I am happy my fingers actually straighten up onto a straight splint with a slight 2nd joint curvature. My fingers haven't been this open and straight in three years.
The joints were heavily bruised and swollen, after three days now the swelling is almost depleted. Lot's of ice.
The good news I'm looking foreword to doing many things I struggled with before with two curled fingers.
Also the best part from XIAFLEX are the scars from surgery on the finger have disappeared. That's another piece of this bio drug that will help others not just with Dupuytrens Contracture, but also help those remove serious scarring from burns etc. It's a good day!
Arthritis sucks but wadda do? I hope sharing this helps. Many have this disease and don't even know it.
Have a great Day!
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03/12/2015 00:52
Builder1
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03/12/2015 00:52
Builder1
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Re: Another Dupuytren in town...needs help!
I had my first NA 12 years ago when I was 53 on my left pinky. It was bent almost completely over. I went to Dr Eaton in Florida and had a 90% correction. It returned along with the pinky and thumb on my right hand. I went back to Dr Eaton in 2007 and had about a 95% correction on both hands. Returned again in both hands - both thumbs and pinky along with the pointer finger on the left hand , so three fingers on the left , two on the right. Dr. Eaton closed his practice so i went to a local Austin Tx hand surgeon who had done about a hundred NA procedures. They have all been somewhat painful but only in administering the local anesthetic, but the last one was almost unbearable. I'm considering surgery now as I dont think I can face the pain from the local again. I've seen some very mixed responses on surgery and would like to make sure that it is a good alternative to someone who is pain adverse at this stage.
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03/12/2015 07:11
wach  Administrator
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03/12/2015 07:11
wach Administrator
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Re: Another Dupuytren in town...needs help!
I found surgery MUCH more painful than NA. Plus a long recovery with again painful exercises. If you want to escape pain, surgery doesn't seem to be the best way ...
Wolfgang
Builder1:
... I'm considering surgery now as I dont think I can face the pain from the local again. I've seen some very mixed responses on surgery and would like to make sure that it is a good alternative to someone who is pain adverse at this stage.
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03/15/2015 03:37
Sherise
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03/15/2015 03:37
Sherise
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Re: Another Dupuytren in town...needs help!
Sherise:
Still after surgery, needle appendectomy and xiaflex injection yesterday. 5-6 small injections in one finger. My finger is so swollen & hand it feels like it's going to bust open. It's painful & brused in pinky area . Xiaflex is a enzyme which was my last chance to eat thru the collagen built up on the finger cord and breakup the severe scarring from surgery. The normal side effects is extreme bruising, swelling and itching all over. No severe side effects or allergies have I experienced so far.
Next week go in for finger manipulation.The dr. Wanted to wait a week due to the severe scarring from hand surgeon.It hurts like a son of a gun. Still waiting and holding out for a positive result from XIAFLEX .i figure if it's used for penis DC straightening I have a lot of sympathy for the man who goes thru XIAFLEX. It's safe and a better solution than surgery. I decided if used for that then safe for a pinky finger. Yet never heard of a male using XIAFLEX for DC of the penis. I can't imagine.he must be kept in a self induced coma. I can't move my hand or barely move PERIOD. How could he walk. I am in a lot of pain , as each day goes by it gets a little better. Stay positive and let The Lord take charge. POSITIVE THOUGHTS !
Update after XIAFLEX biological drug injection for DC.
Three weeks now after manipulation to pull the finger straight. Opened part way with a small curve . The best part about Xiaflex it has removed all the scarring from the surgery 3 years ago. ( research is being included for removal of scar tissue from burn victums.) it makes sense since XIAFLEX dissolves collagen.
I now wear a splint daily and PT EXERCISES. All 4 fingers went into DC after surgery 3 years ago. The pinky is the finger which had the XIAFLEX injection and so much better. I no longer have trouble opening the frig that my finger will get caught in those types of handles, now no mittens to garden I can wear garden gloves.
In a few weeks go in for needle appendectomy on the nodules in the palm causing all four fingers to curl and cannot place hand flat on table yet. This was all due to surgery on one pinky that had been effected by DC. It was after the surgery that all four fingers flared and they began to curl as a reaction to surgery. This was common, yet the surgeon did not tell me. I expected to prevent one finger fron curling yet all four after surgery even my pinky were curled and frozen.
Thanks to the new bio drug XIAFLEX it has open my pinky. It was not easy I had all the typical side effects after the injection. The drug cost is $3000.00 and my insurance covered all but $600. It was well worth the cost to have my finger open and not stuck in a curled shut frozen position. I suffered several side effects sore swollen elbow, and very sore in the arm pit area for 2 weeks. Also received cortisone shots in the nodules in my palm to relieve the nodule pain.
Edited 03/15/15 06:15
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03/15/2015 03:45
Sherise
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03/15/2015 03:45
Sherise
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Re: Another Dupuytren in town...needs help!
Builder1:
I had my first NA 12 years ago when I was 53 on my left pinky. It was bent almost completely over. I went to Dr Eaton in Florida and had a 90% correction. It returned along with the pinky and thumb on my right hand. I went back to Dr Eaton in 2007 and had about a 95% correction on both hands. Returned again in both hands - both thumbs and pinky along with the pointer finger on the left hand , so three fingers on the left , two on the right. Dr. Eaton closed his practice so i went to a local Austin Tx hand surgeon who had done about a hundred NA procedures. They have all been somewhat painful but only in administering the local anesthetic, but the last one was almost unbearable. I'm considering surgery now as I dont think I can face the pain from the local again. I've seen some very mixed responses on surgery and would like to make sure that it is a good alternative to someone who is pain adverse at this stage.
Ask your doc to use a freeze spray on UR hand before the injection for numbing so the injection does not hurt. My hand surgeon did that each time and there was no pain. Also with injections in the bottom of my feet the same technique to freeze spray the site before the injection. It really does not hurt as it numbs the hand close to a dentist numbing the gums before the injection.
Whatever you decide I hope UR hand can return to UR expectations. Surgery caused all three of my fingers to curl and freeze. The pinky finger had surgery and what most drs. don't tell u that surgery can cause a flare, and make DC worse. As it did in my case.
Good luck and keep us posted.
Edited 03/15/15 06:13
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01/03/2016 06:28
CLJ
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01/03/2016 06:28
CLJ
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Re: Another Dupuytren in town...needs help!
maat:
I would be glad to post photos of current condition, if I can figure out how. I don't have "before" photos but can tell you that I had to wait for a contraction of +35 degrees in order to qualify for surgery, which occurred for my left hand only in December 2014. I should also mention that I have been stretching my cords daily since I started applying the solution.
Hi Maat,
How's your DC treatment with DMSO & SSKI working out? Thanks for your post here.
I'm about to embark on treating a new 4 month old nodule with DMSO & SSKI which has just started to bind and cause very slight contracture. I'd used DMSO successfully a couple years back on an Achilles heel tear so I'm familiar with the need for care and caution. I'll be making my own SSKI with Potassium Iodine http://youtu.be/BwOI2_Kg5IU
Thanks,
Chris
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10/11/2017 11:58
Steelhead
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10/11/2017 11:58
Steelhead
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Re: Another Dupuytren in town...needs help!
Builder1:
I had my first NA 12 years ago when I was 53 on my left pinky. It was bent almost completely over. I went to Dr Eaton in Florida and had a 90% correction. It returned along with the pinky and thumb on my right hand. I went back to Dr Eaton in 2007 and had about a 95% correction on both hands. Returned again in both hands - both thumbs and pinky along with the pointer finger on the left hand , so three fingers on the left , two on the right. Dr. Eaton closed his practice so i went to a local Austin Tx hand surgeon who had done about a hundred NA procedures. They have all been somewhat painful but only in administering the local anesthetic, but the last one was almost unbearable. I'm considering surgery now as I dont think I can face the pain from the local again. I've seen some very mixed responses on surgery and would like to make sure that it is a good alternative to someone who is pain adverse at this stage.
I have had all forms of medical treatment on both hands and still have a severe case. However, one thing I have not seen in any posts is that a few years ago, the FDA approved a new (modified) procedure called "Needle aponeurotomy under sedation". I also tried regular NA with a local anesthetic injected first. Very, very painful at the time of treatment despite the anesthetic. Given the recent approval of Needle aponeurotomy under sedation, I tried that.
Basically, the difference is it is performed by a qualified hand surgeon trained in NA but is in an operating room with an anesthesiologist. The anesthesiologist does not knock you out, but sedates you to the point you don't feel the NA itself but are alert enough to speak up immediately if the hand surgeon touches or gets too close to a nerve. Then, he/she can try a different angle or different spot. It's like riding the edge of being fully sedated but still able to flag nerve contact. I only had one time during the procedure where I needed to speak up.
Results were good, the hand surgeon could work on all parts of my fingers and hands in one shot, and post-procedure recovery took about an hour+ for the anesthetic to wear off. The key is to have an excellent anesthesiologist who can put you under just enough to knock out the pain but not so much that you cannot indicate contact with a nerve. Of course a very qualified and experienced hand surgeon with NA expertise is also critical I had both.
To me, this was the most pain-free way to release multiple fingers in one shot and there was nearly zero wound care...just a few holes here and there where the NA needle was inserted.
The challenge is to find a qualified NA doctor who has experience and willingness to employ Needle aponeurotomy under sedation and an anesthesiologist able to get you just right for the procedure as previously mentioned. My doctor moved out of the country and the only NA folks I have found in my area only do the traditional pain killers in the hand and handle this as an in-office procedure. I will keep looking.
I have also had multiple Xiaflex treatments, open surgeries, etc. I am considered the worst case by nearly every hand doctor I have seen. Some doctors won't even attempt treatment. Luckily, right now I am working with a hand doc who is pushing the edge on what Xiaflex can really do and we have come up with a special pain management regime through experimentation, which has made the injections and the manipulation processes more tolerable.
Good Luck!
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10/11/2017 12:06
wach Administrator
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10/11/2017 12:06
wach Administrator
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Re: Another Dupuytren in town...needs help!
Hi steelhead,
your first NA probably did not work out as supposed because what you are describing as "under sedation" is exactly how the normal NA ought to work, except that it is performed not necessarily in an operating room. I had NA about a year ago and it was completely painful except for a little pain when injecting the finger to numb it to some extent. But anyway, it's great that the procedure worked for you!
wolfgang
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10/18/2017 20:20
Steelhead
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10/18/2017 20:20
Steelhead
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Re: Another Dupuytren in town...needs help!
wach:
Hi steelhead,
your first NA probably did not work out as supposed because what you are describing as "under sedation" is exactly how the normal NA ought to work, except that it is performed not necessarily in an operating room. I had NA about a year ago and it was completely painful except for a little pain when injecting the finger to numb it to some extent. But anyway, it's great that the procedure worked for you!
wolfgang
It is different because the sedation is done by IV / general anesthetic rather than a local series of anesthetic shots into the hand and wrist. I have had both methods...Because the sedation is delivered by IV / general anesthesia and medically monitored by an anesthesiologist, it has to be done in an operating room. The only "pain" was due to the setting of the IV.
Anyway, thanks for the reply. Just trying to help.
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11/02/2021 08:41
Paolo3291not registered
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11/02/2021 08:41
Paolo3291not registered
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Re: Another Dupuytren in town...needs help!
Sherise:
Sherise:
Still after surgery, needle appendectomy and xiaflex injection yesterday. 5-6 small injections in one finger. My finger is so swollen & hand it feels like it's going to bust open. It's painful & brused in pinky area . Xiaflex is a enzyme which was my last chance to eat thru the collagen built up on the finger cord and breakup the severe scarring from surgery. The normal side effects is extreme bruising, swelling and itching all over. No severe side effects or allergies have I experienced so far.
Next week go in for finger manipulation.The dr. Wanted to wait a week due to the severe scarring from hand surgeon.It hurts like a son of a gun. Still waiting and holding out for a positive result from XIAFLEX .i figure if it's used for penis DC straightening I have a lot of sympathy for the man who goes thru XIAFLEX. It's safe and a better solution than surgery. I decided if used for that then safe for a pinky finger. Yet never heard of a male using XIAFLEX for DC of the penis. I can't imagine.he must be kept in a self induced coma. I can't move my hand or barely move PERIOD. How could he walk. I am in a lot of pain , as each day goes by it gets a little better. Stay positive and let The Lord take charge. POSITIVE THOUGHTS !
Update after XIAFLEX biological drug injection for DC.
Three weeks now after manipulation to pull the finger straight. Opened part way with a small curve . The best part about Xiaflex it has removed all the scarring from the surgery 3 years ago. ( research is being included for removal of scar tissue from burn victums.) it makes sense since XIAFLEX dissolves collagen.
I now wear a splint daily and PT EXERCISES. All 4 fingers went into DC after surgery 3 years ago. The pinky is the finger which had the XIAFLEX injection and so much better. I no longer have trouble opening the frig that my finger will get caught in those types of handles, now no mittens to garden I can wear garden gloves.
In a few weeks go in for needle appendectomy on the nodules in the palm causing all four fingers to curl and cannot place hand flat on table yet. This was all due to surgery on one pinky that had been effected by DC. It was after the surgery that all four fingers flared and they began to curl as a reaction to surgery. This was common, yet the surgeon did not tell me. I expected to prevent one finger fron curling yet all four after surgery even my pinky were curled and frozen.
Thanks to the new bio drug XIAFLEX it has open my pinky. It was not easy I had all the typical side effects after the injection. The drug cost is $3000.00 and my insurance covered all but $600. It was well worth the cost to have my finger open and not stuck in a curled shut frozen position. I suffered several side effects sore swollen elbow, and very sore in the arm pit area for 2 weeks. Also received cortisone shots in the nodules in my palm to relieve the nodule pain.
Basically, the difference is it is performed by a qualified hand surgeon trained in NA but is in an operating room with an anesthesiologist. The anesthesiologist does not knock you out, but sedates you to the point you don't feel the NA itself but are alert enough to speak up immediately if the hand surgeon touches or gets too close to a nerve. Then, he/she can try a different angle or different spot. It's like riding the edge of being fully sedated but still able to flag nerve contact. I only had one time during the procedure where I needed to speak up.
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