Hello.

First, much thanks to organizers of this forum/site. A real god-send. Finally getting useful information (one might naively think that might come directly from one's doctors/health care providers).

Me - 52 yrs. of age, stage 1 DD w/ 34% in right hand ring finger. Doctor is rec. partial f. and ring finger release surgery. I would really like to try other treatments first. Also, for me precursor seems to be painful knuckle pads on top of hand ...that just started on right hand pinkie. (Doctor said a while ago, "oh, those are harmless [not to worry]~ ...so stupid me let the ring finger go to long before "oh, you need surgery").

Still getting lots of information from this site. Just did a search on Albany. "ladwil" mentioned that CDPHP (hmo) did not cover NA. That's distressing since that's my hmo.

"Guest3" on 9/13/09 mentioned NA from Dr.Khuri. If that person could let me know if procedure was ok/would rec. him for that procedure would be great (I could send personal email address if need be).

I apologize if I'll find this in archive. But, any recommendations on doctors and/or facilities in upstate NY, greater Northeast of US ...that have some experience treating this disease?

Other comments welcome as well.
Thanks again and take care all.
John

Would really like to know what is the "German Protocol" in Albany !?

The Name "German" doesn' always mean the same contents !!

Single dose - Total Dose - Time between Courses - ALL is relevant !

In ADDITION: PRIMARY PALPATION and LONG-TERM EXPERIENCE
will give you the right choice of treatment area covered ... I have
heard of to many cases which have been treated wit too small fields
because not all disease was discovered and tretaed at the first ...

Please report us back from your experience .... THX, Larry

Edited 02/18/11 01:09

Thanks for replies folks. Appreciate it.

The update I rec'd today - spoke again with doctor - who is not recommending NA or other treatments other than surgery because ~he could not feel the cord~ to be able to do NA or enzyme injection.

Hello John,

Glad you found the forum. It helped me out immensely.

I see that you found my posting on CDPHP. I can assure you that as of two years ago, despite numerous appeals including much supportive information, CDPHP refused to cover the successful NA I had performed to correct a 66 degree contracture. They of course would have covered the $10,000 open surgical procedure that I obviously did not need. I have since switched insurance to MVP after being told that coverage is not guaranteed, but that MVP has covered the NA procedure for other patients.

I encourage you to look into NA with Dr. Charles Eaton in Florida. My trip to Florida flying on Southwest from Albany to West Palm Beach cost along with Dr. Eaton's fee cost less than what Dr. Pess quoted me for NA with him once his facility fee was included. NA was one of the best decisions I've made. There is very little discomfort and the results were immediate for me.

You stated a 37% contracture - do you mean 37 degree? If so, that is pretty well contracted and possibly past the intial stage for radiotherapy.

Let me know if you need any further info. Who is the hand doctor you have been seeing in the Albany area? I was seen by the hand specialist at Schenectady Orthopedics. He did not even mention NA until I brought it up. He wanted me to wait for more contraction then have open surgery which he said would most likely be a temporary fix for a little finger PIP joint contraction. I was very discouraged when I heard that news and I am happy that I chose not to take his advice.

Best wishes,
Lise

To Tsheff1,
Not much of any update for you from here. For better or worse, I've just put off decisions/treatment.
After checking again with CDPHP (and verifying whether or not they would cover NA) ...I may very well
change to MVP (HMO). Which would be too bad because otherwise I'm satisfied with cdphp.

Good luck.