Going to Germany for RT! |
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03/23/2011 20:50
spanishbuddha Administrator
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03/23/2011 20:50
spanishbuddha Administrator
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Re: Going to Germany for RT!
Short update from me nearing four weeks after first round of treatment. I've already reported soreness in the hand that was treated, and that continues but is declining.
The sun is finally out in the UK, and whilst looking out for my grandson in the park I noticed my treated palm in bright sunlight, and compared to my untreated hand it's changed colour, looks like a bad fake tan job!
Also I do have dry surface skin, it's shedding slightly and in the web at the base of the fingers there are signs of surface cracks. Hard to spot any of this in normal light. Carrying the urea cream around with me now, but the dryness is, ahem, really what an 'older' man would take for granted (with apologies to the PC brigade).
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03/23/2011 22:23
bill_c
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03/23/2011 22:23
bill_c
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Re: Going to Germany for RT!
How progressed was DD for you when you began treatment, SpanishBuddha? My DD seems quite active but I just found out today that I won't be able to see a hand specialist to obtain an official diagnosis (for insurance purposes) until 5/10. I haven't hit contracture yet but I'm afraid of how far things could progress between now and the time that I can first start RT.
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03/24/2011 01:48
Maddie
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03/24/2011 01:48
Maddie
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Re: Going to Germany for RT!
Everyone is different, but I can tell you about my experience... My DD progressed extremely rapidly after initial diagnosis. I started RT about 5 weeks after being diagnosed, and my DD had progressed significantly during that period -- the nodules grew a lot, and I went from having only nodules to having a number of cords. I didn’t have contracture yet, but I lost some mobility in my thumbs. I didn’t begin RT until 5 weeks after diagnosis because I was really starting from scratch when I was diagnosed -- I had never even heard of this disease. So I spent some time researching treatments and doctors and deciding what to do, on top of arranging to be away from work etc. I wish I had been able to start RT sooner, though, as it would have left me in better shape. My progression was rapid enough that even a week made a noticeable difference.
So if I were in your shoes, I definitely would not wait until mid-May to move forward. Time is critical when getting RT, because generally cords and functional limitations that have developed will not be reversed. I don't know about your specific insurance situation, but I don't see why the diagnosis the radiologist provides wouldn’t be adequate. My insurance company (Blue Cross) did not ask me to have the treating radiologist’s diagnosis confirmed by another doctor.
If the radiologist feels that he/she needs a diagnosis from a hand specialist, that’s a different story. But it seems to me that you should be able to get in to see some hand specialist before May! I’ve seen three different ones in my local area since I’ve had this condition, and it has never taken more than a week to get an appointment with them. If you live in an area with limited medical resources, maybe it’s harder. If that's the case, maybe you could find someone in a nearby city?
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03/24/2011 02:00
Maddie
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03/24/2011 02:00
Maddie
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Re: Going to Germany for RT!
Bill,
Just went back and read your posts in another thread, in which you said that you saw an orthopedic surgeon who confirmed that you had DD but wouldn't put it in writing. Another poster stated that her radiologist never asked to see a written diagnosis, and that was my experience also. When I contacted radiologists, I just told them I had been been diagnosed with DD, and when they examined my hands they certainly seemed to agree that it was DD. If you have doubts yourself it would certainly make sense to get a confirmation before doing RT -- but as mentioned above, if I were you I would pull out all the stops to find someone to do it much sooner than May.
Maddie
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03/24/2011 16:49
bill_c
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03/24/2011 16:49
bill_c
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Re: Going to Germany for RT!
Thank you for the advice, Maddie! I called my health insurance and they said that my GP can refer me to anyone, in or out of the network. So I called my GP's office and let them know that the orthopedic surgeon had said that it was Dupuytren's and that I would like a referral to Dr. Pauling Chang at the Palo Alto Medical Foundation. We'll see what happens. I'd like to move as quickly as possible and it sounds like my insurance will be accomodating. I'll keep you informed.
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03/24/2011 18:41
spanishbuddha Administrator
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03/24/2011 18:41
spanishbuddha Administrator
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Re: Going to Germany for RT!
bill_c: How progressed was DD for you when you began treatment, SpanishBuddha? My DD seems quite active but I just found out today that I won't be able to see a hand specialist to obtain an official diagnosis (for insurance purposes) until 5/10. I haven't hit contracture yet but I'm afraid of how far things could progress between now and the time that I can first start RT.
I was diagnosed in October last year, but had symptoms for about up to 2 years before that, such as lumps, patches, then soreness, but didn't really realise what it was. I started monitoring it after diagnsosis lasted Xmas I perceived a spurt.
Since I play a little piano, and have an amputation in the other hand (not from DD) I decided to do something positive about it, even if perhaps it was unnecessary and there is some risk.
I don't have a contracture in the DD hand but do have some loss of flexion in the other hand due to scarring, and really wanted to prevent any DD contracture if I could.
Good luck in your pursuit.
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03/25/2011 07:32
zobirdie
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03/25/2011 07:32
zobirdie
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Re: Going to Germany for RT!
Hi!
I just wanted to add that since I began growing my Ledderhose (By the way, am I the only one who has named their nodules? If they are going to mess up my life, they need names!!) I have become croc woman. Now, I have high arches, so the extra support is nice for me.
http://www.crocs.com/crocs-rx-medical-si...ootwear-medical These are brilliant for me.
But I have all manner of different and flatter arched styles and they really help. They are also nice to wear when you dont want to wear runners! Now that you have had treatment, they might work for you!
Z
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04/12/2011 11:26
spanishbuddha Administrator
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04/12/2011 11:26
spanishbuddha Administrator
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Re: Going to Germany for RT!
Another update from me, going on six weeks after the first round of RT on one hand.
The minor dry skin and discolouration has gone. The soreness I previously reported is almost non-existent now too.
One of the nodules is significantly reduced, less hard, and flatter. Others I don't really notice a difference, but what I do notice is that when stretching the palm out, it is definitely flatter overall than it used to be. The wrinkles, cords and bumps are less obvious.
I'm starting to believe for myself this is going to work
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04/12/2011 15:14
LubaM.
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04/12/2011 15:14
LubaM.
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Re: Going to Germany for RT!
Its only been six weeks...improvement after RT continues for many months. I had RT in Nov. 09 and continued to see improvement even after 5-6 months. Its been almost 18 months and the progression of the disease has completely stopped in the radiated areas of my left hand and left foot.
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04/12/2011 19:02
Larry
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04/12/2011 19:02
Larry
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Re: Going to Germany for RT!
spanishbuddha: Another update from me, going on six weeks after the first round of RT on one hand.
The minor dry skin and discolouration has gone. The soreness I previously reported is almost non-existent now too.
One of the nodules is significantly reduced, less hard, and flatter. Others I don't really notice a difference, but what I do notice is that when stretching the palm out, it is definitely flatter overall than it used to be. The wrinkles, cords and bumps are less obvious.
I'm starting to believe for myself this is going to work
Looks like that you went over the most critical period similar to me, when I was treated for the first time on my hand. When I compare my personal experience with radiation therapy of both hand and feet, I think that hands are more sensitive than feet ... and you can observe and palpate them every day at any hour which you don't do with your feet ... So it seems also to be a matter of awareness ...
Looking forward to hear more good news from you, spanishbuddha
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