Personal experience |
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07/31/2012 06:20
GaryBall
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07/31/2012 06:20
GaryBall
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Re: Personal experience
Fair play seph,
I had the same thought with my RT in NZ.......it was available here......but I ended up in hamburg......I suspect your thought process is similar to mine......get it done right first time with the experienced practitioners......
I have no regrets.....
Good luck to you...
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07/31/2012 18:09
flojo
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07/31/2012 18:09
flojo
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Re: Personal experience
When waiting too long with too much contracture, there are the skin splits, sometimes grafting needed, etc. I have not waited and don't intend to wait for very much contracture to occur. When mine contracts to about 20 degrees, I'm at Dr. Denkler's office, spend 30 minuted, see their standard white poodle, the ladies in the front office and their babies, and I'm on my way.
Dr. Denkler near San Francisco is aggressive in using NA on contracture that is quite severe. You can email pictures to him and he'll email you back. Get his opinion even if you won't be able to use him. He's passionate about helping people with Dupuytren's and I know he will be happy to look at your pics and reply.
You can come to California to see him. His charges for me were about $600 for about 6-8 needle releases. He'll do more than one release on one cord depending on how far reaching the cord it. Look at his website. It's in the list in the treatment menu.
Whatever and where you have your NA done, see if you can get a prescription for a night splint. I went 2 1/2 years between NA treatments and had my last one a year ago. I did not have a night splint the first time, but I've used one for the past 11 months now. I feel confident my night splint use will push my need for NA out at least one additional year and I'm hoping 3 more years.
I you have more questions, post them or message me.
Good luck!
Flora
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09/22/2012 17:11
Putzo
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09/22/2012 17:11
Putzo
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Re: Personal experience
Tried realease on left pinky finger last October...came back worse...Doctor said surgery was necessary and that I would have to be put out during surgery. This did not sit well with me so I searched for other doctors in the Toronto area that perform the surgery.
DR Tang who is a plastic Surgeon who specializes in hands was on the list. I met with her and immediatley felt comfortable, she took the time to explain in detail every step before during and after surgery. She also said t6hey could perform a Bier Block, which means I did not have to be put under.
Basically they froze my arm, and clamped at the upper muscle and performed the surgery. I was awake all along and was informmed by the doctor at every step of proceedure. I arrived at hospital at 10 AM and was taken right away to pre op. They then took me to prep room where the the proceedure to block was performed.
A ultrasound was used to find the nerve that blocks my arm. A needle was inserted and freezing applied. once freezing was in place They then proceeded to wrap from my hand up in elastic band to remove the blood from arm. At that point a "clamp" was put around my arm and tightened. The elastic was removed...and off to operating room.
The wierdest part was, as my arm was frozen in an upright position, through-out the entire proceedure my mind was telling me the arm was still raised.
Anyway, I chose not to watch and was drapped. What ever she was doing it took about 30 minutes at which time she said alll went well.
I was taken to recovery, where the doctor gave me instructions that I must...starting immediatley close my fingers and hold to make sure I dont lose movement, and to continually do this, either use it or lose it, and that she will see me in 2 weeks.
As I had not taken any anethetics or sedatives I was immediatley released form hospital.
The arm regained full feeling in about 2 hours, but the hand was still frozen for about 4 more. I went to bed at about 11pm with the pinky feeling frozen.
Next morning Hand, Pinky were not frozen but Pinky was tingly, I could move somewhat to closed fist but did have to force all the way where it should have been,,, releasing of fist did hurt as if it had not been done in a long time.
It is now 4 days since surgery, my finger is straight, still abit tingly but better every day.
I ride a Motorcycle and I believe that by tomorrow it will be applicable to do so
In all the stress I went through prior to surgery was unwarranted as the whole proceedure was not that bad
Edited 09/22/12 20:14
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09/22/2012 17:28
marigail
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09/22/2012 17:28
marigail
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Re: Personal experience
Thanks so much for sharing your story, Putzo. I am delighted that this block seems to be your answer---Yay!!! Since I posted last time I have taken the advice of many and have looked into NA. My doctor here said that surgery was the only remaining option, and I was not very happy. Using the list provided through one of the members on this list, I found a Dr. Raskin in NYC who does the NA procedure. I was able to send pictures, my history, etc. to him, and I have an appointment in early November. From the pictures, he thinks the NA may do the trick. However, since my pinky is extremely contracted, and I may need some kind of surgical procedure, that according to the person I spoke with is practically non-invasive. I'm wondering if it might be the block you are describing. I seem to be able to "feel" the cord all the way up the side of my arm. I am feeling much better about this whole situation since reading your post. I had two xylaflex injections and the Dupytren's came back worse than it was before.
Keep us posted on your progress!! marigail
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09/22/2012 17:53
Putzo
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09/22/2012 17:53
Putzo
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Re: Personal experience
Xiaflex is just released in Canada, and as doctor said you want to be first? Don’t think so... My duprytens was extensive in left hand and is also in right...later down the road for this.
I was really scared of being put under so the block was an welcome option.
But I am surprised 4 days later of the use I have already, and each day it is better...ask about the block as doctors have been doing this since the 1800's and they all know about it...it is used on kids as an alternative
Good luck, and I am sure whatever you do you will realize after the stress was not warranted
Putzo
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09/23/2012 11:02
marigail
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09/23/2012 11:02
marigail
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Re: Personal experience
It is very encouraging to learn of your success. I am trying hard not to stress over this because from all accounts this doctor I'm seeing is excellent. I'll be glad to be able to use my left hand more efficiently again! marigail
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09/23/2012 15:28
Putzo
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09/23/2012 15:28
Putzo
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Re: Personal experience
marigail: It is very encouraging to learn of your success. I am trying hard not to stress over this because from all accounts this doctor I'm seeing is excellent. I'll be glad to be able to use my left hand more efficiently again! marigail
Believe me, The stress you are experiencing is normal, I was a basket case until about 3 days before my surgery I was at a party, and a friend that was having her Breast removed day after me was also there. She was handling her problem better then I was. I thought wow hers is alot worse then what I am going through, It kind of calmed me to a point that I accepted this as minor compared to other peoples problems.
If this is the worst thing I ever have to go through I will be lucky there are a lot of worse situations that we could be faced with
Day 5 and stiffness in pinky a little less Have to force bending of finger to make a complete fist. Bruising in palm is visble but not bad.
Finger still has tingling but livable I have only been taking Tylenol extra strength since surgery, (they did prescribe T3) but tylenol ex seems to work well- take about 6 a day at 4 hour intervals
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09/23/2012 18:52
moondanc
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09/23/2012 18:52
moondanc
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Re: Personal experience
flojo:
Whatever and where you have your NA done, see if you can get a prescription for a night splint. I went 2 1/2 years between NA treatments and had my last one a year ago. I did not have a night splint the first time, but I've used one for the past 11 months now. I feel confident my night splint use will push my need for NA out at least one additional year and I'm hoping 3 more years.
Flora
Flojo--thanks for being such a great advocate for splints. I have a bunch of other medical problems (getting hip replaced in 2 days) and have trouble sleeping so have stopped wearing my splint--covers two fingers on RH but I'm in need of one for two fingers of my LH also. My questions are: 1) how many fingers does your splint cover (or how many fingers are being splinted) 2) Do you have just one or one for each hand?
Diane
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1 .. 7 .. 12 13 14 15 16 .. 34 .. 51
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