Hi Bonnie.
I'm a Kaiser client as well. I met with Dr Jann Johnson a few weeks ago for the nodules forming in my Rt palm. She refered me to a Kaiser affiliated cancer treatment center in Rohnert Park for RT therapy.
I met with the very nice staff last week, and will begin a 7 treatment series next week. 3X a week 'til done.
Although the staff physician admits they have little experience treating RT, I am hopeful!
Happy to share anything else I can with you.
Thomas

Bonnie,
I did not have RT, but Jann Johnson did NT on both my hands several years ago. I Highly recommend her for your Kaiser NT if your contracture reaches that point. She is very gentle, careful, and informative during the NT procedure.

Note that my primary care physician was reluctant to refer me to her because at that time the Kaiser system did not list her under Dupuytrens. But just be assertive and insist that Jann is the right person. The three times I was in her office I only saw other DD patients, so my impression was that DD is a very large part of her skills, and that she has done NT on a large number of patients.

Jann Johnson is in the Northern California San Rafael Kaiser location, And one time there were a group of doctors from your LA area to observe her procedures for DD. Perhaps there are now more choices within the Kaiser system, but I would suggest that you at least contact Jann Johnson via email to see if she could recommend someone in your area to help.

Jeff

Jeff and Alan, thanks for the suggestions and information. I will definitely email Dr. Johnson to see if she has any southern CA Kaiser recommendations. I don't know why that never occurred to me

theliteratesims:

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I wasn't sure if I should start a new thread or bump this one up, so I'm going with bumping

I was not able to find an email address for Dr. Johnson, so I did a little research to find out about getting second opinions through Kaiser. I had to file an appeal with member services in which I indicated that the first doctor to whom I was referred had very little experience with Dupuytren's and was only familiar with the most invasive of procedures. (He was, in fact, dismissive of the other potential treatments like NA and injections.)

Much to my surprise, my request to see Dr. J was approved. I'm going to be calling this morning.

Also interesting, the letter granting the request says that my file was reviewed by the Chief of Service for the Fontana Medical Center. The Chief of Service indicates that "there is no prophylactic treatment to prevent the progression of the disease process," which suggests to me that radiotherapy is very much off her radar. No surprise, I suppose.

I have Kaiser and I live in San Jose CA. I emailed my GP a week and a half ago about radiation for early stage Dupuytrens. She referred me to a radiologist, Dr. Seward, who I saw yesterday. The Radiology unit at Kaiser on Homestead, Santa Clara has seen 5 Dupuytrens patients. Kaiser does not consider radiation a legitimate treatment, but will consider it if it meets the criteria of the German facility. She explained all the possible side effects of radiation and that the timing would be important as it probably could not be treated again at a later date. I did not meet the criteria in her opinion. I have early stage Dupuytrens in my left hand. I have no nodules yet, but notice pulling in my palm between little and ring fingers. She did examine both hands, marked my left hand where it is pulling, and took pictures of both hands. My Dupuytrens appears to be in remission at this time. I have had no change in over a year.

She offered to send me to a surgeon if I wanted to see one, even if I just wanted to ask questions. I declined at this time. I am glad that my Dupuytrens is now documented in my file. I will keep an eye on my hand and if I see it progressing, I will pursue Radiation.

I was surprised how fast Kaiser followed up to my initial inquiry. I think I will be able to work my way through the system if and when I need help in the future. Jann Johnson in Redwood City sounds like the Kaiser doctor most familiar with Duypuytrens.

By the way, I contacted the office of Dr. Chang, Dupuytren radiologist at Palo Alto medical in Sunnyvale. Estimated cost was $17-25,000. I also called UCSF radiologist, and initial consultation was almost $900. Both do take most insurances though. But since I have Kaiser, it would all be out of pocket. That gave me the motivation to see what Kaiser would do for me.

Good luck to everyone. This website and forum has been so very helpful.