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NA experience by Australian Users
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07/19/08 05:05
Larrane Rocky

not registered

07/19/08 05:05
Larrane Rocky

not registered

Re: NA experience by Australian Users

Thanks Brian for you quick response hope your op on your hand is successful.

Cheers Larrane


07/30/08 10:43
rosco 
07/30/08 10:43
rosco 
Re: NA experience by Australian Users

After some 10 months, I am back to reviewing the latest in Aussie cures for DC. I had surgery on my left hand in Nov 07; and after some minor initial problems with swelling, the hand has returned to almost 100% functionality. The only lasting efftect is the loss of some sense of touch around the scar line, and a permanent stiffness of tissue along the scar line itself.

However, compared to what has happened to my righ hand, my left hand surgery is non problematic. 10 months ago, the DC was mild in the right hand...10 months later it is rampant. It is growing chords everywhere. This agressive progression of the disease is apparently not uncommon after some initial surgery...but I did not expect it to be this pronounced.

So...I am back at the old equation...surgery vs alternatives...which led me to this posting. I have contacted Jennifer Green's surgery some 4 months ago, but was told that ideally I should be 60 or over to be considering NA. So at 54 years of age, I ceased pursuing this method of therapy. However, I am encouraged by some of the positive feedback from this posting as to success, and hence ask if the 60 years entry threshold holds for other patience?

In the mean time, I have decided on this occasion to go to a recognised hand surgeon for my right hand (appointment early Sept) ; not that I am over displeased with surgery on the left hand performed by a general orthopeadic surgeon, though those who followed my posting from last November may recall my experince in the local private hospital (that left even the surgeon bewildered), and the lack of follow-up physiotherapy.

Will keep my eye on this forum; I am absolutely convinced that there is more constructive debate conducted here that in many of the local doctor's surgeries. It pays to be informed.

07/30/08 11:34
wach 

Administrator

07/30/08 11:34
wach 

Administrator

Recurrence after surgery

I personally believe that the risk of recurrence and extension after surgery is often underestimated. I had problems similar to yours, six new nodules within a month after surgery and the new nodules growing much, much faster than the original and operated on nodule/cord.

I used radiotherapy to slow down the progression of my new nodules and it worked. Four nodules basically vanished, two kept growing but slower. My fingers are still straight.

As to the age of 60 limit for NA: that's an arbitrary number. You can use NA at any age but if the disease is very agressive NA might have to be repeated after a year or less and thus won't be that beneficial. As young patients often have a more agressive form of Dupuytren's NA is considered good espcially for older patients. But itt's not really a question of age but of the speed of disease progression.

For very agressive Dupuytren skin grafts might be useful. Barry (posting as "newman") has a lot of exprience with it down under. You might talk to him.

Wolfgang

07/31/08 05:11
rosco 
07/31/08 05:11
rosco 
Re: NA experience by Australian Users

Thanks Wolfgang for feedback, I will consider NA again as it is an attractive alternative. Will keep the forum informed of my decision and progress.

One other thing that puzzles me constantly, and the researchers as well no doubt, is why some people get this disease and other in the same family do not.

I seem to have the classic related symptoms of the disease, DC in both hands slowly forming since mid 30's (now aggressive); frozen shoulders (operations on both shoulder to release in my early 50's), and the early stages of diabetes. Yet, I am as thin as a pin, don't drink or smoke, and exercise regularly. No other relation in my family on either side has had any one of these complaints, yet I have all three. I am definitely my parents' son due to other facts and obvious charateristics (ie I am not adopted!), so why is it that I have these conditions, but my sibling, parents or any other relation (close or far) we can think of does not? I have read much on how it runs in families, but I guess that inheritance is not the only factor here?

Don't really expect that anyone can answer this mystery...but it does intrigue me greatly. The only saving grace is, from my three daughters' perspective, that the disease may not be transmitted on and might hopefully disappear out of the family tree permanently...but I somehow I doubt that.



Edited at 07/31/08 05:11

07/31/08 12:54
brianc 
07/31/08 12:54
brianc 
Re: NA experience by Australian Users

Hi Rosco,

I recently posted my NA experience with Dr Green in Sydney.

My experience was that it was a such simple 10 minute procedure and really quite benign. Even if it does reoccur there doesn't seem to much to lose by giving it a go.
Dr Green has said though, that NA cannot be used with contracture in the second joint of the finger.

At this stage, 4weeks later, I have had no side effects.

Regards
Brian

08/01/08 22:01
Issleib 
08/01/08 22:01
Issleib 
Re: NA experience by Australian Users

Rosco,

Genetics is fascinating. Dupuytren's is an autosomal dominate. But if, when, and how the gene is expressed clinicaly depends on many other contributing factors both in the rest of your genetic make up and your environment. This is true of many autosomal dominate problems. So one of your parents carried the gene but was lucky enough not to have expression of it. At younger ages men out number women but by mid 80's the numbers are the same. So a woman might die of old age before she had symptoms of her Dupuytren's.

My Father has it. His Father didn't. His mother died in her early 60's and may have died before she had symptoms.

So your girls have a 50% chance of inheriting the gene but may luck out and have very mild or very late age of onset.

08/13/08 01:27
james 
08/13/08 01:27
james 
Re: NA experience by Australian Users

Hi, I live in NZ and don't think there is anyone here doing NA, so rang Dr. Green. She is not taking any new patients and moving to Qld. I was given the name of David Dilley (02 9687 8735). Does anyone have any experience with him?

I am hoping NA will be suitable for me. V mild in right hand; no loss of dexterity and 1 v small nodule. Left hand started progressing more quickly, 2 nodules, fingers still straight but sore in the mornings, dexterity a bit reduced.

Any feedback would be great. Thanks

James

08/15/08 04:08
dirk

not registered

08/15/08 04:08
dirk

not registered

Re: NA experience by Australian Users

To Newman, I think we are on the edge of pushing to alternative treatment in Australia for Dup. My hand physiotherapist & other physios. are pushing for NA & radiotherapy to be available. It has taken a long time for a few surgeons to listen. I was wondering if you had passed on your knowledge to radiotherapists like Dr Borg in Adelaide? Wolfgang has helped to make this infomation also available on this website. Because we don't have experienced specialists like the ones in Europe & the States we all want to encourage ways to treat our hands before we need hand surgery in Australia. When Dr Green says she will only do hands over 60 it still seems we have to convince them. What do you reckon? Seeya

08/15/08 10:30
newman 
08/15/08 10:30
newman 

Re: NA experience by Australian Users

Hi Dirk.I certainly have passed on my experience and met with Dr. Borg. showing him the book" Radiotherapy for Non-Malignant Disorders " written by Prof. Seegenschmiedt and others. He has knowledge of the Prof's work and has made contact with him, on the treatment of other Benign diseases. He was so impressed with the publication he told me he would purchase the book . ($300 Aus.) I will keep in contact with him after my return from Germany in October. (as it will then be over 12 months, since my initial radiotherapy treatment. ) He led me to believe he would list on the Dupuytren Society web page. He is in private practice at Adelaide Radiotherapy in Adelaide. Dr. Greg Bain is also a well respected Surgeon, who is offering the needle fasciotomy (NA.) in Adelaide. His web site www.gregbain.com.au will give an indepth to his work and experience.
Regards.

Edited at 08/16/08 06:10

08/18/08 03:56
newman 
08/18/08 03:56
newman 

Re: NA experience by Australian Users. ATTENTION JAMES- in N.Z.

Hi James, Australia Calling,
I am aware Dr.Green was moving to Queensland and hopefully, if she continues to practice, she will let me know . I have made enquiries and Dr. Dilley has a web site

On the web, the e-mail drop down window is INCORRECT. I will e-mail him to see ,if he will list on the Dupuytren Society web site. I do not have much experience with needle fasciotomy ( NA. ) ,but you sound more of a candidate, for low dose radiotherapy, as you have no contracture. You do not mention any evidence of cords and my understanding is ,that in NA, the cord is broken to release the contracture in the joints.
Have a look on the forum, click on Dupuytren and scroll down to 'Eaton Strikes Again' by Randy- Open the window and click on both the links , the first contains a video and the second pdf. files on procedure. This will broaden the horizon . Regards.

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