| Lost password
220 users onlineYou are not loggend in.  Login
Question on RT and others
 1 2
 1 2
04/07/2010 22:40
David26

not registered

04/07/2010 22:40
David26

not registered

Question on RT and others

I just found out I have DD. 58 year old male. I've had a couple of nodules while but didn't know what they were and they weren't problematic. I now have a large nodule on the R hand as well as one on the L hand. Both under the pinkie.

I am scheduled to see Dr. Bourland in Memphis. I live in Alabama. Bourland trained under Eaton. Anyone familiar with him? I have some contracture which just began of the right pinkie but it is not severe at this time. No other contracture. However, I worry that I may have the more aggressive, diffuse version as my whole right palm is getting warm and tight and I can tell something is going on. Also, I think there are some other smaller nodule on both hands.

I have read everything I can find for the past few days. I hope that I am a candidate for RT. From the Eaton web site, I find a clinic in Charlotte, NC (Southeast Radiation Oncology, Dr. Anthony Crimaldi) which is closest to me. What is the RT procedure? How many treatments over how many days? Are these people going to Dr. T getting a hotel room for the duration? Is the RT generally covered by your medical insurance?

Bourland http://www.orthomemphis.com/physicians/bourland

thanks

Edited 04/08/10 01:41

04/07/2010 23:05
flojo 
04/07/2010 23:05
flojo 
Re: Question on RT and others

From your description, it sounds like your Dupuytren's is "active". They say that is key as RT is successful when DD is active. My RT was done after I had NA to straighten mild contracture. The RT protocol that Dr. T used on me was 1.8Gy for 5 days each week for two weeks in a row. Someone posted that he did a stronger radiation for fewer days. The radiation protocol seems to be somewhat varied, so you can talk with the radiologist in Charlotte about what they use. Don't hesitate to email them or call to ask questions.

I did stay in the San Diego area for 4 nights each week even though I live only 80 miles away. If there is a next time, I may commute.

Feel free to ask more questions. It's a strange disease and you need all the input you can get because your DD will be different from anybody else's, but you'll find some similarities. Keep on researching, then you just have to decide what is best.

For me, RT was successful. I wouldn't hesitate to have it in my left hand or in the non-radiated parts of my right hand if I find it has become active.

04/07/2010 23:47
David26

not registered

04/07/2010 23:47
David26

not registered

Re: Question on RT and others

how does the "active" work, does it switch between active and non-active?
how long do they last (realizing it would different for most)?

04/08/2010 00:19
LubaM. 
04/08/2010 00:19
LubaM. 
Re: Question on RT and others

My experience with RT is similar to Flojo's...I had RT on the palm of my left hand and also on the bottom of my left foot where I had two nodules
(Ledderhose...related disease to DD). I also had my RT with Dr. T. in LaJolla, CA...in my case he used 2 gys per day, for five days, two weeks in a row, no weekend, for a total of 20 gys.

Some of the nodules on my hand are gone. The nodules that remain are much softer, .....and the itching has completely stopped, no new nodules since the RT. I believe the fact the itching stopped is an indication the disease is NOT progressing for now...the two nodules on my foot are almost gone as well... My RT was in November 09, its too soon to know if the good results are permanent, one can only hope.

I would definitely suggest you try the RT and as soon as possible, before the contracture gets worst, at which time it would be difficult to do the RT, especially for the small finger where contractures are harder to correct.

If you should get a contracture, look into Needle Aponeurotomy (NA)...
lots of information on this forum and on Dr. Eaton's website. I had NA with Dr. Eaton 3 weeks ago on my other hand, very successful, and Dr. Eaton is wonderful....

Keep posting your questions....Best of luck.

04/08/2010 20:05
lori 
04/08/2010 20:05
lori 
Re: Question on RT and others

Hi there,

I saw Dr. Crimaldi at Southeast and can answer any questions you have about him. Southeast also has other doctors who treat DD and I saw them during my RT.
I will have my last checkup with him in June.

I had a nodule and cord that he did radiation on. My procedure was to have RT for 5 days in a row for a week at 3gy and then repeated in 6 weeks. After reading about others having a smaller dose and then being able to retreat the same area I know that if mine returns in another area I will talk to Dr. Crimaldi about using the lower dosage.

If you have any questions about Dr. Crimaldi or the practice, let me know. I found them competent and extremely friendly. They answered all of my questions (and I had a lot). When I was looking for someone to treat me and was checking out his practice, instead of a nurse or assistant returning my call, he returned my call and spent quite a bit of time going over the procedure.

I went for my initial vist at his office in Charlotte. Since it is connected to the hospital it went towards my deductible and from that point on I saw Dr. C. and had RT at the satellite offices so it would be considered an office visit and all I had to pay was the copay. All of his locations are near hotels and restaurants. Should you decide to go to him let me know and I willl email him.


Lori

04/10/2010 02:39
David26

not registered

04/10/2010 02:39
David26

not registered

Re: Question on RT and others

Thanks Lori,
Yes, I have a lot of questions. Here we go.
1. Do I need a referral of some sort for the RT from my hand doc?
2. Does medical insurance usually cover the RT?
3. I see a lot of talk about Dr. T in SD. I would go there if I thought it might be worth the extra money. I live in the SE.
Can anyone comment on Dr. T versus the others.
4. I just found out about the DD in the last few weeks. Seems like the palms and feet are getting a burning feeling. I have several very sensitive nodules in the palms but not much contracture yet, just a little bit in one pinkie. Nothing noted on the feet except a burning sort of feeling.
5. Does DD go active and then inactive. I see mention about you need the RT when it is active.

Thanks for the help if anyone can provide.

David

04/10/2010 21:35
LubaM. 
04/10/2010 21:35
LubaM. 
Re: Question on RT and others

David....
Not sure what state you live in and what insurance you have...I am in California and have Medicare (primary) and Anthem Blue Cross PPO (secondary), so insurance issues might be different for me...
1) I needed NO referrals from any Dr. for my RT treatments
2) My Medicare and Blue Cross PPO paid in full...actually Scripps Hospital in LaJolla, CA and Dr. T. accepted Medicare payment as "payment in full", the PPO paid a very minimal amount on top.
3) Dr. T. near San Diego,CA is wonderful, but surely there are other good radiation Drs. elsewhere...radiation is pretty much a standard thing everywhere, if they use the same protocols
4) Burning is one of the signs of active Dupuytrens...but there would be a presence of nodules (I believe) on the bottom of your feet if you had Ledderhose Disease...I know Dr. T. doesn't consider doing RT unless there is active Disease...i.e. itching, growth of nodules....

Hope this helps...

04/10/2010 22:03
David26

not registered

04/10/2010 22:03
David26

not registered

Re: Question on RT and others

I live in Alabama but have BC/BS of Illinois.

How does the RT doc make his plan on what area to radiate. I saw something about CT mapping but don't know if that is actually what is used.

I am still interested in something more local if it is the same treatment I would get at Scripps. For instance Dr. Crimaldi in Charlotte. This disease is quite scary based on what I've seen in the past two weeks. I'm am just getting over the shock of it all.

A follow up on the active part. Does DD alternate between active and inactive. If yes, what is a typical length of time for the two modes.

I have a lot of questions and am glad for the help I've rec'd on here. It must be a rare disorder, especially the more aggressive version which is what I think I have. I called my 82 year mother because I remember her fingers were bent and curled the last time I saw her. I thought it was arthritis. After questioning her, I found out she has what sounds like knuckle pads, thus probably DD and then inherited.

04/10/2010 23:40
LubaM. 
04/10/2010 23:40
LubaM. 
Re: Question on RT and others

I'm not sure how the coverage works if your primary is BC/BS, doublecheck with them, because in my case Medicare paid first...

Dr. T. first did a CT scan (I guess to know how deep to radiate), then mapped the area that needed radiation according to where the nodules/cords were located. Dr. T's protocol for me was... 5 days of 3Gys each from Mon. to Fri...then again repeated the following week....for a total of 30 Gys. for the whole treatment....

The same dosage was done on the bottom of my left foot (Ledderhose) where I had two nodules.

The length of time between active and inactive disease would totally be individual from patient to patient...

04/10/2010 23:56
flojo 
04/10/2010 23:56
flojo 
Re: Question on RT and others

My input -
- I did not need a referral for RT
- Insurance coverage, same as Luba's - Medicare primary and Anthem Blue Cross secondary
- I thought Dr. T was very competent and knows radiation, but I think other radiologists would also know. They'd only need to research the use of radiation for DD. I'm sure they could consult with Dr. T or other radiologists who have done RT for DD
- As for whether it is active or not, mine was an itchy/crawly feeling and more nodules kept developing, but it's hard to describe. It's like "you just know" but it's also hard to know for sure.
- Mine never went inactive but apparently DD does go active then inactive. Like everything else about this disease, it is unpredictable. Once I found out that it needed to be active to get RT, I wanted to get it done right away in case DD decided to go inactive. I've read for some that it would be inactive for years or never inactive. You just never know. I wanted to be aggressive in dealing with mine and be ahead of DD, not behind and letting it dictate how I was going to live my life. Again nothing predictable about the time frame of the different modes.
- Dr. T palpated my hand to feel where the nodules & cords were. The CT scan was to determine the depth of the DD relative to the bones and then know how deep to send the rays.
- The mapping was to make the metal plate with holes in it so that the rays would go only where the nodules were in the hand. In my case, it was my whole palm, so there was one big hole the shape of my palm.

I just recommend that you try the other treatment options rather than surgery. My case is very similar to Luba's. I don't regret getting NA first to straighten out my stage 1 contracture so I could hold my hand flat for the RT. RT was the best thing for me. It did stop progression and about 3 months after RT, I found I was no longer fixated on my DD hand. Before RT, it was in the back of my mind all the time.

Keep the questions coming. At some point, you'll feel OK about what you know and make a decision.

 1 2
 1 2
Crimaldi   similarities   Radiation   nodules   inactive   questions   insurance   disease   radiologists   Question   because   different   contracture   treatment   circumstances   aggressive   unpredictable   Charlotte   Unfortunately   opportunities