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NA-my recent experience
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05/25/03 02:30
Juli

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05/25/03 02:30
Juli

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NA-my recent experience

I had the NA procedure done by Dr. Lermusiaux last week in Paris. I had 4 cords in my right hand and two in my left hand treated in a two day period. I am happy with the results and the trip was well worth it. I can lay my hands flat, but the residual cord tissue remains although it is softer now that the cords have been severed.

My fears of never damage were unfounded and I join the ranks of satisfied Americans who made the trek to France to have a very simple procedure performed. Dr. Lermusiaux's is quite competent. His manner is comforting and assured.

I may be in a unique position having had all three of the currently practiced procedures, surgery, collagenase, NA. This must be a first! I must say that having experienced all three procedures, I would put NA at the top of the list. I only wish I had the procedure done sooner.

The only real drawback is the travel, but if you must go a long way to be treated, what a nice place to go. I went by myself and could only manage tourist level French, but this was not a problem. It is easy to get around Paris, as they have an excellent Metro system, you just need to pay attention to the signs which are clearly labeled and abundant. A single train ride(about 1/2 hr) from the CDG airport to center city Paris was just 8 Euros. The total trip including transportation(air and trains), lodging, food and treatment was about $1,000.

Given my history of reoccurance, I am sure the contractions will return, as they have done so after surgery and the collagenase treatment. I will without hesitation go the NA route again.

I will be happy to share additional details of my experience with anyone who has any questions.

I would also like to thank all the people on this forum who had the NA procedure and answered my questions, gave me the benefit of their experience, and offered me their support.

Thanks to you all!!

05/25/03 02:06
Terry

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05/25/03 02:06
Terry

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additional info

juli have only had surgery and thoght i new a little about dc till i found this board damn shame i didn't look erlier have a few ? and sorry for the other posts.
? do they do this needle treatment on severe dc.
? you said yours retuned was it really bad (mine retured on the right hand and yep had surgery again)
? sounds like recove was really short was it.
any answers would be a great help and maybe i can get my father to get his done if there is a less intrusive methord.
thanks Terry



05/26/03 02:29
juli

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05/26/03 02:29
juli

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additional info

Terry,

My worst contracture was 40 degrees on my RH little finger and this was not a problem to treat, although on this finger I also have a sizable nodule(which the NA procedure does not correct) at the PIP joint which restricts full extension. I can straighten my finger fully with assistance, and use a splint at night to try and stretch the finger back to its normal position. The MCP joints were about 20 degrees and these are now back to normal.

Recovery was very quick, although it is still sore in the palm. I had no problem handling my luggage on my return to the U.S. I had one hand done on Monday, one on Tuesday. I swim for conditioning and was able to get back to my normal swimming routine on Saturday(a mile swim with no problems at all!). By contrast, I was unable to swim for 6 WEEKS after surgery.

05/26/03 02:16
john 
05/26/03 02:16
john 
Collagenase reatment?

Juli2 said;
"I may be in a unique position having had all three of the currently practiced procedures, surgery, collagenase, NA"

Anybody, -What is collagenase treatment?

john

05/26/03 02:53
Terry

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05/26/03 02:53
Terry

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~dq~knife/enzyme/needle~dq~

juli thank for the quick reply, sounds like this might have been a far better course than the one i took hopefully it will be a benafit to my dad . unfortuanatly he has phase 2-3 inboth hands some fingers are 2 others 3but luckaly not to much in the thumbs. mine was in the 3 stage on rt hand little finger 1 in the left but way larger an area ie thumb little finger crook between index and thumb.will deffinatly try this befre surgery if it returns. am still recovering from lft hand surgery it sucks.
thanks for the answers there will be way more if it's okay.
terry

05/28/03 02:54
randy simula

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05/28/03 02:54
randy simula

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Julie2 - All 3 procedures?

For those of us whow would like avoid conventional surgery, N/A and collagenase seem like the only options. There is not a lot of first hand input available on either, especially the collagenase. You state that N/A would be your procedure of choice for any future needs. Can you share more about your exposure to the collagenase treatment, how it compares to N/A and why you would choose it out of all 3? You are probably unique in having all 3. Would be great to hear from anyone else how may have, thanks.

05/28/03 02:20
Juli

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05/28/03 02:20
Juli

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Collagenase/NA

Randy,

The main reason I would do the NA treatment vs the collagenase at this point in time is as follows:

1. Collagenase is still an experimental drug, now in phase III trials, and is not available to the public unless they are in the trial program. There is also a limit of 5 injections, and I have had 5 therefore having any more until the drug is approved is moot for me. It is only offered at Stonybrook and Stanford(?) in California.

2. Each collagenase injection in the clinical trial program requires about 12 follow-up visits. I was in the Stonybrook trial and live in Delaware, therefore each follow up visit was about a 12 hr day X12 visits X5 injections=60 trips @ 12 hr a trip. I was able to combine some trips but this is still alot of travel time. This of course will be different once the treatment is approved and can be done by a local surgeon.

3. Each session treated only one cord vs as many as 4 in one day and two the following day with NA. I am not sure how many collagenase injections can be done in one day, but it is probably restricted in order to maintain an upper concentration limit of enzyme in a localized region of the hand. This is a big factor for me as to why I preferred the NA treatment. I was able to have 6 cords treated in a two day period. I don't think collagenase can be administered to treat these many in this short a time period.

4. NA will probably always be less expensive than collagenase as collagenase is a patented treatment, requires expensive processing equipment to make, will be regulated by the FDA, and will be administered by a hand surgeon. NA in Europe costs between $50-$100 per session. Collagenase will probably be no less that $1000, probably much more, per treatment if I had to guess.

5. Collagenase is probably 2-4 years from approval and then surgeons will need to be trained and enzmye manufactured adding more time before it is routinely available.

6. Collagenase is administered in a specific dosage, if it doesn't sufficiently depolymerized the cord, you need another treatment. In my case the first two injections worked like a charm. I had recurrence within two years and then two out of the next three injections afterwards did not work as well as the first two. Although in one case it was on a very thick cord and the other on the PIP joint which, as I understand tends to be problematic.

In the NA procedure the physican can continue to cut the cord until it is severed.


Don't get me wrong, I think the collagenase treat is a much better alternative to surgery.

I think realistically it is many years away and it is false hope to think otherwise. I held out for at least I year hoping the collagenase would be approved, and finally gave up and went the NA route.

Collagenase save me from having surgery and I didn't have recurence for 2 years. Since my NA was just done last week, I have no idea how long it will be before I need another treatment.

05/28/03 02:44
Tom M

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05/28/03 02:44
Tom M

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Thanks

Thanks for the thoughtful and insightful information on your experiences with both NA and injections. I hope you will keep us informed regarding the results of the NA.

Tom M

05/29/03 02:04
randy simula

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05/29/03 02:04
randy simula

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All 3 procedures - Julie2

Thank you so much for your details on collagenase vs. NA. This is a terrific assist to those of us considering our first intervention. Surgery is still my last option, hoping for collagenase, knowing it is still aways off but feeling that NA is my best bet. I have yet to hear from anyone on a negative response after having NA, just wish it was not such a long trip. A bit distressing to hear of reoccurance so soon after collagenase but is guess it is the nature of the desease. Hope your NA goes longer, I have not seen any real long term studies on it. Thanks again for taking the time to provide us some insightful details in an objective manner. It helps a lot.

05/29/03 02:42
jim h

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05/29/03 02:42
jim h

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collagenase vs NA

I've been following the Collagenase story for several years. The interesting thing to me is that based on the publicly available information I can see no advantage to this treatment over needle aponevrotomy. They are just 2 ways to mechanically sever the cord.

Maybe the Collagenase injections are safer, with less likelyhood of nerve damage, but on the other hand, it's an active substance and there could be side-effects as yet unknown.

Maybe there would be less recurrence as some of the band would be dissolved, instead of just snapped.

And I suppose an injection is a simpler technique, not requiring extensive practice and/or training.

Or maybe I'm just missing something.


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available   treatment   injections   depolymerized   mechanically   injections=60   administered   surgery   realistically   procedures   Collegenase   transportation   experiences   unfortuanatly   procedure   additional   concentration   probably   recurrence   collagenase