| RT at Fairfax Inova Hospital, VA |
|
|
1
|
| 1
|
|
05/03/2015 19:21
LizT 
|
05/03/2015 19:21
LizT
|
RT at Fairfax Inova Hospital, VA
Hi,
I'm new to the forum and this is my first post.
One month ago, I had surgery on a 50 degree contracture of my left little finger. The surgery was performed by Dr. James Higgins at Greater Chesapeake Hand Specialists in Lutherville, MD. It is straight now. Yeah! I'm very happy with my finger. I have full range of motion and am continuing with physical/occupational therapy working on regaining my grip strength.
However, my palm is another story. The surgery seems to have triggered other nodules to increase in size and I feel a couple new ones beginning. (I knew this was a risk of the surgery.) I do not have any contractures at this point in time. I figure now is the time for RT as the DD is clearly active.
Has anyone had experience with RT for DD at Fairfax Inova Hospital outside Washington DC? Is there a specific doctor there I should ask to see? It seems many people travel to Germany for radiation treatment. Is that still necessary or has the expertise been developed in the US by now?
|
|
|
|
|
05/04/2015 06:07
spanishbuddha  Administrator
|
05/04/2015 06:07
spanishbuddha Administrator
|
Re: RT at Fairfax Inova Hospital, VA
LizT:
Hi,
I'm new to the forum and this is my first post.
One month ago, I had surgery on a 50 degree contracture of my left little finger. The surgery was performed by Dr. James Higgins at Greater Chesapeake Hand Specialists in Lutherville, MD. It is straight now. Yeah! I'm very happy with my finger. I have full range of motion and am continuing with physical/occupational therapy working on regaining my grip strength.
However, my palm is another story. The surgery seems to have triggered other nodules to increase in size and I feel a couple new ones beginning. (I knew this was a risk of the surgery.) I do not have any contractures at this point in time. I figure now is the time for RT as the DD is clearly active.
Has anyone had experience with RT for DD at Fairfax Inova Hospital outside Washington DC? Is there a specific doctor there I should ask to see? It seems many people travel to Germany for radiation treatment. Is that still necessary or has the expertise been developed in the US by now?
Hi Liz
There are increasing number of hospitals gaining experience of doing RT for DD in the US. Over on the Dupuytren's Contracture Facebook Group in the files section there is an incomplete and unverified list of hospitals who have done RT for DD in the US. US patients seem to be leading the way by taking the literature published from Germany and going to see the radiologist with it, so that the 'German protocol' is used. They have even created another FB group promoting the use in the US, called DART (Dupuytren's Advocates for RT?). Of course this is no replacement for the experience and personal consultation with ProfS in Germany, and I think the group is a bit naive and blasé in their promotional approach; but still if you do your homework and make the right judgement about timing it may something to look at.
We list the Inova Fairfax hospital and Doctors Gopal Baja and Samir Kanani here on the treatment page, and they will have has some experience of using RT to treat DD. It is difficult to judge whether the flare reaction will settle down or continue to progress with a cord and another contraction. I wonder why you had surgery, and not NA or Xiaflex?
Best wishes
SB
|
|
|
|
|
|
|
05/04/2015 09:03
LizT
|
05/04/2015 09:03
LizT
|
Re: RT at Fairfax Inova Hospital, VA
spanishbuddha:
Hi Liz
There are increasing number of hospitals gaining experience of doing RT for DD in the US. Over on the Dupuytren's Contracture Facebook Group in the files section there is an incomplete and unverified list of hospitals who have done RT for DD in the US. US patients seem to be leading the way by taking the literature published from Germany and going to see the radiologist with it, so that the 'German protocol' is used. They have even created another FB group promoting the use in the US, called DART (Dupuytren's Advocates for RT?). Of course this is no replacement for the experience and personal consultation with ProfS in Germany, and I think the group is a bit naive and blasé in their promotional approach; but still if you do your homework and make the right judgement about timing it may something to look at.
We list the Inova Fairfax hospital and Doctors Gopal Baja and Samir Kanani here on the treatment page, and they will have has some experience of using RT to treat DD. It is difficult to judge whether the flare reaction will settle down or continue to progress with a cord and another contraction. I wonder why you had surgery, and not NA or Xiaflex?
Best wishes
SB
Hi Spanishbuddha,
Thanks so much for your rapid reply.
I drove a 5 hour round-trip to the nearest facility that performs NA only to be told that my cord was not anatomically appropriate for NA. They offered to do a minimally invasive surgery (the incision would have been straight from my MIP to the PIP) using a nerve block. I would have been fully conscious, talking! I could have watched! No thank you!
Then I came home and consulted with the local hand surgeon who proposed a surgery with an incision about 30% longer than the one I ultimately went with. This surgeon was going to use full general anesthesia in an operating room at the local hospital where patients with god knows what are operated on. No thank you!
My final consult was with Dr. Higgins who offered a middle of the road procedure with "conscious sedation" (I was still truly out of it) in an operating suite where they only perform upper extremity surgeries. No actual sick people are there. That is what I chose.
I did discuss Xiaflex with each of these providers. I know folks on this forum speak highly of it. For me it just did not seem to be the right decision. I'm happy so far with the surgery and I have every hope and expectation that my finger will strengthen, return to full function within the year and I will be done with it.
If the RT is an appropriate next choice and I can put the whole thing in remission for a while, I hope to go forward with that and get all this hand junk out of the way this year. Hopefully to be followed with 45 years of functional hand usage!
Thanks again,
Liz
|
|
|
|
|
|
1
|
| 1
|
837 users online
Login
