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06/19/2016 23:06
Joyce 
06/19/2016 23:06
Joyce 
Re: Options

Thank you Newman I do want to know experiences otheRd have had. And reassuring that my RD doc is waiting the 3 months. Later

06/20/2016 16:25
bstenman 
06/20/2016 16:25
bstenman 
Re: Options

Any activity that requires gripping something for hours is going to aggravate the Dupuytrens as with your canoeing and kayaking. I replaced our conventional kayaks with Hobie kayaks which are propelled by the feet and the paddle is only needed to leave the shore or dock. I can go twice as far and twice as fast and not use my hands. Think about bicycling if you had to use your hands and arms to move the pedals instead of your legs and feet.

I had the best results with a combination of Xiaflex injected on the first day and manipulation and NA performed on the following day. The hand surgeon could assess which areas would benefit the most from the Xiaflex and which would require and were safe to treat with NA.

The doctor who is a board certified hand surgeon and who has performed thousands of NA procedures and many hundreds of Xiaflex ones, Dr. Keith Denkler in Larkspur California, prefers to do the combination of NA and Xiaflex over either procedure individually and believes that both are preferable to performing a fasciectomy.

06/20/2016 21:54
moondanc 
06/20/2016 21:54
moondanc 
Re: Options

bstenman:

I had the best results with a combination of Xiaflex injected on the first day and manipulation and NA performed on the following day. The hand surgeon could assess which areas would benefit the most from the Xiaflex and which would require and were safe to treat with NA.

The doctor who is a board certified hand surgeon and who has performed thousands of NA procedures and many hundreds of Xiaflex ones, Dr. Keith Denkler in Larkspur California, prefers to do the combination of NA and Xiaflex over either procedure individually and believes that both are preferable to performing a fasciectomy.

After my bad experience w/Xiaflex in the trials, I still haven't gotten up the nerve to do the combo procedure and opted for NA only when I saw Dr. Denkler a year or so ago. I even convinced him to do the more "gentle" Eaton technique-- smaller holes, less skin tearing. I'm having fairly good success wearing splints-alternating on each hand--every night. Two fingers on left hand have actually improved a few degrees while the two fingers on my right have only contracted a few degrees more. I'm lucky to live close to Dr. Denkler but he's worth the trip.

06/30/2016 14:55
onetopmom 
06/30/2016 14:55
onetopmom 
Re: Options

Joyce:
Moondanc: NA was an option but stats given me of reoccurring were great.Have had DD nearly 10 years. (69 now). Very active yogi and able to flatten hand for "down dog" with pressure. Now impossible to flatten and painful. Also recently excessive itching.

Hello Joyce
I also am very active tennis player, yoga and kayaking and was just dx with DD in right hand. I had a small nodule and two cord going up toward my finger and a small cord going down toward my wrist all within two weeks. My left hand has one cord and I can feel a very small nodule starting. I was going to Jacksonville Florida to meet with oncologist on July 5th next week. He is doing a MRI first. Then I can start R/T the next day. I have a slight burning tingling sensation in both palm and both feet especially at night. I think this means its active right now. Oh course my hand surgeon who dx my DD wants me to wait and see and come back when my finger start to bend for N/A he is totally against any R/T treatment. I might be to early for the R/T will see next week. This is the hardest decision I need to make so far in life. I'm 55 and I can not stop kayaking living on the water in Florida. Playing tennis and I also love yoga. I'm hoping if I do that R/T I might be able to get more years before I need to start with N/A and maybe other new treatments will come along. How is your hand after R/t ?? Any burns, blisters, peeling?? I had stop playing tennis for now as I think it just might make it worst at this time. Thanks again

06/30/2016 15:50
Joyce 
06/30/2016 15:50
Joyce 
Re: Options

OnetopMom
I have completed 1st of 2 rounds RT on left hand and have had no adverse affects. Nothing! Which surprised me since I had read same as you, i.e. burning, itching. I am so hopeful it will slow down progression as right hand is Stage 3. I found my Ocologist Dr. Chen on DD foundation list and I have a great deal of faith in her. She waits 3 months before 2nd RT. Initially I sought her for treatment on right hand but after reading so much about its success in initial stages we decided to do left hand (for now).
My advice for what it's worth with no medical background (but a gal who knows her body and it's state of wellness) I would go for it providing you find a good oncologist
That was important for me. She heads Wilmot Cancer Oncology at University of Rochester Medical Center. She personally oversaw all the imaging and blocking areas to radiate. Interesting she decided against tatooing (normal procedure for ease of technicians to calibrate radiating area (I presume) as didn't feel it needed any trauma not even a pinprick.
Keep in touch fellow yogi

06/30/2016 16:05
Joyce 
06/30/2016 16:05
Joyce 
Re: Options

OnetopMom
Forgot to mention. I discussed with Dr. Chen my concern on best next steps for right hand and she got me a referral to what she considered the best duypretrens surgeon to discuss right hand options. Noting we can also do RT in the event I want to go that route also. From what I am hearing it may be unusual for RT specialist to work with specialist in surgery. Appointment couple weeks out.
Joyce

06/30/2016 21:02
onetopmom 
06/30/2016 21:02
onetopmom 
Re: Options

Joyce:
OnetopMom
Forgot to mention. I discussed with Dr. Chen my concern on best next steps for right hand and she got me a referral to what she considered the best duypretrens surgeon to discuss right hand options. Noting we can also do RT in the event I want to go that route also. From what I am hearing it may be unusual for RT specialist to work with specialist in surgery. Appointment couple weeks out.
Joyce
Thank you especially about the tattoos. I'm seeing Dr. Ackerman in Jacksonville they are doing around 25 hands a year and they are seeing more and more each year as more people find out about R/T treatment. Oh course my hand surgeon did not even want to discuses R/T only wait and see then N/A so I think a lot of people just don't know about R/T the information is not even passed on in most hand surgeon plan for treatment. The first thing is a MRI and consultation if I decide on R/T then some type on scan I think maybe cat scan then R/T . Did you have a MRI or cat scat as part of the oncologist treatment plan. I have read that some are getting great results and not needing round 2 of R/T only 15gy. I know the normal is 30 gy with 2 rounds. I'm also taking lots of vitamins and all the oil including vit E magnesium. SSKI mixture to keep the nodule soft.

I will let you know how my appointment in on Tuesday. I think at this time I'm going for the R/T I might be too early that the only thing. since I only have one nodules and three cords. We will see Thanks again for your help and support. Cant wait to get back to tennis and yoga.

06/30/2016 23:19
Joyce 
06/30/2016 23:19
Joyce 
Re: Options

My opinion if you have been diagnosed with DD have any nodules or contracture it is never too early for RT. RT primary use is to slow DD down and from what I know there is no.such thing as DD not progressing yet slower for some than others.
About surgeon not knowing about RT. Don't buy it. If they are treating DD they should know and know that it's promising. Maybe they don't want to cross lines of expertise but that's unfortunate and I would be leary.
Yes I had MRI and extensive "blocking" beforehand to pinpoint exactly where to radiate
In fact I had a new nodule when I went and she redid area so as to include new effected area.. That's why she didn't want to tatoo the area i.e. new inflammation.
I am learning as I go. Have seen several hand docs but was.hoping the Xiaflex would be answer. I lived awhile in Sarasota and believe my doc there (that did injection) was very knowledgeable DD. His staff helped me get grant for xiaflex from Healthwell Foundation. His name is Dr Michael Gordon @ Sarasota Orthopedic.Assoc. I would go back to him in a minute but moved back to NY and thus NY insurance plus it was before. RT. At the time Xiaflex.was.very new and he was.one of few doing it.
About supplements Vit E Magnesium, massage et al yes I've done.the gamet but truth is DD has progressed severely in right hand and beginning left and though these may help the symptoms of pain,.hardening, etc I don't think any of these is enough (for me).
Lastly go to oncologist or doc armed with questions. Check out 2015 International Duypretrens Foundation Symposium video sessions which include videos from experts on what's new what's working and what's on the horizon. Anyone treating you should be up on this. Remember it's in your hands not his or her's.

07/01/2016 06:29
spanishbuddha 

Administrator

07/01/2016 06:29
spanishbuddha 

Administrator

Re: Options

Joyce:
My opinion if you have been diagnosed with DD have any nodules or contracture it is never too early for RT. RT primary use is to slow DD down and from what I know there is no.such thing as DD not progressing yet slower for some than others.
About surgeon not knowing about RT. Don't buy it. If they are treating DD they should know and know that it's promising. .
OK, but that is not the opinion of ProfS in Hamburg, who publishes most on using RT to treat DD. He often sees patients with nodules and early signs where he recommends delaying treatment until later, in order to maximise the effectiveness. He uses a physical examination where he palpates the hands and feet, and a questionnaire about symptoms and history, then uses a scoring system to decide whether to treat or not. It's based on his own 20+ years of performing this treatment. In many cases early signs go dormant anyway with no further symptoms until years later, if at all. Remember that for the majority with symptoms they never get a contracture. If you view his lecture from the symposium you can see the specific proliferation stage he is targeting with RT. Since RT is not a prophylactic, and is a one chance only treatment (with some exceptions) you want to take that one chance at the right time.

I experienced this myself, I was fretting over nodules and symptoms in one hand, and upon examination and discussion he recommended waiting until there were more symptoms and development. I was disappointed at the time but indeed he was right and it went quiet for a few years on its own.

Edited 07/01/16 09:41

07/01/2016 10:27
Joyce 
07/01/2016 10:27
Joyce 
Re: Options

Yes we all have our own opinions and.hopefully when asked I qualified I was basing mine purely on my experiences these last 10 years dealing with the progression now in both hands. BUT if someone tells me they want to wait "for maximum effectiveness" based on research.I would ask why take the chance on waiting when research has also shown RT most effective early stage and can be retreated. Also age and lifestype are factors for me. DD became my nemesis late 50s when I was retired, felt I was in great physical shape and doing rather strenuous activities.
I thought homeopathy means, xiaflex injections. NA and all less evasive treatmenta were best for me and now I.can add RT. Why not try all that these learned researchers are researching..until there is a cure and until they know.the cause.

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