| Lost password
136 users onlineYou are not loggend in.  Login
RT doctors in Boston or the northern east coast USA?
 1 2
 1 2
11/04/12 15:35
mrl 
11/04/12 15:35
mrl 
RT doctors in Boston or the northern east coast USA?

Hi - I'm convinced myself that RT treatment is the way to go for me. The question is, who to see. I'm located in Boston, but I called Delaney's office at the MGH, and found that while he and another associate both do RT, that they don't see a lot of patients. That doesn't worry me as much as the cost. Has anyone gone to MGH lately? I can't find the post, but I believe someone said that MGH was very expensive (not surprising). Can anyone confirm this for me? Are there any other good options in the northeast? Or someone along the coast, that I can fly back and forth to easily? I'm amazed to see that Jet Blue non-stop round trips to many major cities along the coast, are pretty inexpensive (i.e. = to the cost for a nice hotel room). I've seen Dr. Weiss in VCU highly recommended. Any other suggestions for people that might be closer? Thanks. - Mark

P.s. feel free to email me directly at mrl@psfc.mit.edu

11/04/12 19:13
Larry 
11/04/12 19:13
Larry 
Re: RT doctors in Boston or the northern east coast USA?

Re: RT doctors in Bosten or NE of USA

I strongly recommend an experienced radiation therapy center; if you consider costs, a trip to Germany is probably cheaper and Dupuytren radiotherapy much more evolved in this country than in the USA. There are several people who have reported good service in Hamburg Strahlenzentrum, Erlangen and Frankfurt ....

All German centers have more tha 10 years experience !

11/04/12 20:09
mrl 
11/04/12 20:09
mrl 
Re: RT doctors in Boston or the northern east coast USA?

Unfortunately going to Germany is not an option. Plus, some people have had good success with doctors in the US. Additionally, I think it would benefit patients in the US, if more patients went to doctors in the US, to allow those doctors to gain more experience, and make the treatment more well known here. None of my doctors had even heard of it. The doctor who did, thought it it was a useless treatment. I pointed out the recent long term follow up studies. But the doctor still wasn't convinced, because no studies had been done by "Americans". There is so much dubious stuff being published these days, that I can understand why they are skeptical. I've seen alternative treatments being accepted by doctors, when their own patients benefited from it. - Mark

11/04/12 20:39
Larry 
11/04/12 20:39
Larry 
Re: RT doctors in Boston or the northern east coast USA?

mrl:
Unfortunately going to Germany is not an option. Plus, some people have had good success with doctors in the US. Additionally, I think it would benefit patients in the US, if more patients went to doctors in the US, to allow those doctors to gain more experience, and make the treatment more well known here. None of my doctors had even heard of it. The doctor who did, thought it it was a useless treatment. I pointed out the recent long term follow up studies. But the doctor still wasn't convinced, because no studies had been done by "Americans". There is so much dubious stuff being published these days, that I can understand why they are skeptical. I've seen alternative treatments being accepted by doctors, when their own patients benefited from it. - Mark


All what YOU write, does not explain well, why - plainly spoken - GERMANY is a NO GO !? You can get a good, but probably quite expensive radiation treatment and success in the US. Otherwise you may want to be the "guinea pig" to give the doctors more experience ! It sounds difficult, to give you a meaningful advice. I really hope, you make the right decisions for the only two hands that you have to serve well during a single life .... I know why I made my decisions:



Edited 11/04/12 21:02

11/04/12 20:50
mrl 
11/04/12 20:50
mrl 
Re: RT doctors in Boston or the northern east coast USA?

Please do not respond to any of my questions again.

11/04/12 22:15
GaryBall 
11/04/12 22:15
GaryBall 
Re: RT doctors in Boston or the northern east coast USA?

mrl:
Please do not respond to any of my questions again.
hi mrl...

Larry has kindlyresponded to your question with some advice.....I understand that he is a doctor who also suffers with dups...his valuable experience is worth listening to......please show a little respect...

Gazza

11/04/12 23:53
Lanod 
11/04/12 23:53
Lanod 
Re: RT doctors in Boston or the northern east coast USA?

It is a fact that the German RT centres are by far the most experienced and they have provided the bulk of the research output on radiotherapy threatment for Dupuytrens - as evidenced by respected journal publications etc. I wish it was the case that such experience existed internationally. I personally could not afford to be treated in Germany and instead I went to a less expeienced RT centre. However, I insisted on the 'German' treatment protocol. Larry's consistent message on the importance of relying on evidence-based treatments, and always reminding us of how many hands we each have, gave me the courage to demand the 'German' protocol for the treatment.

I would like second Gazza and say that Larry has been a for rock of consistent and solid information in his contributions on this site - as evidenced by his posts to date. Thank you Larry - your unselfish contributions are very much appreciated.

11/05/12 05:08
mrl 
11/05/12 05:08
mrl 
Re: RT doctors in Boston or the northern east coast USA?

If Larry had told me that he was sorry that I couldn't go to Germany, and that if I had to go to an American doctor, to make sure that the doctor followed the German protocol, THAT would be a kind and useful response. Instead, he insisted to know why Germany was a "no go", and that he implied that only the Germans could treat me properly. And then he includes a very angry looking Icon. That made me very upset. I'm sorry if I didn't feel that was a "kind" response, especially when there is simply no way that I can go to Germany for treatment, given my present life situation. It made me more upset, because I wish I could go, but I can't.

As an aside, I would like to know whether RT is the recommended treatment in Germany, for all patients with early stage Dupuytren's. I.e., do all German doctors who diagnose early stage Dupuytren's tell the person to go for radiation treatment? Is there a German pamphlet, equivalent to the NICE guidance paper, which advises people in Germany on RT? This would be useful to know, which I could show my doctors here. How about in other European countries? What is their official opinion?

11/05/12 14:20
spanishbuddha 

Administrator

11/05/12 14:20
spanishbuddha 

Administrator

Re: RT doctors in Boston or the northern east coast USA?

Welcome to the forum mrl.

You seem to be aware of the NHS guidance in the UK from NICE for Radiotherapy. But even this does not mean that GP's, consultants, or clinics/hospitals, know about, agree with, or follow this advice.

One of the big problems is the treatment is relatively new, relatively undocumented (despite the many publications by Seegenschmiedt et al), and the medical profession is largely conservative and bound by a lot of tradition. At least it is in the UK.

So I suspect that there is a similar pattern elsewhere, and we do get quite a few posts from people from various countries saying their doctor has never heard of RT for DD, and therefore won't help the patient follow this path of treatment.

Now imagine RT was a drug produced by a pharmaceutical company. There would be lots of lobbying for approval, clinical trials, tests, 'free' samples, patient packs, and the promotional marketing blitz. That clearly won't happen with RT. You see it happening to some extent with Xiaflex despite the presence of a well established similar treatment (NA). (I know there may be a few cases with specific clinical application for Xiaflex and DD).

About Larry, his enthusiasm can be direct and blunt. The aggressive graphic would not have been my choice.

11/05/12 21:32
Larry 
11/05/12 21:32
Larry 
Re: RT doctors in Boston or the northern east coast USA?

I try to contribute in a supportive manner as I myself need and had the support of this excellent forum.
Despite being a physician I know the psychological pain about not being able to decide upon the correct personal way to go.

BTW, the graph was simply meant to be an "encouragement" to bend your fate with your own hands, by making appropriate decisions and not "forcing anyone into only one direction.

Sorry, if my comments have disturbed anyone ! THAT HAS NEVER BEEN INTENDED ....



Edited 11/05/12 21:32

 1 2
 1 2
contracture   northern   non-tradidional   Seegenschmiedt   Germany   Unfortunately   treatments   kindlyresponded   patients   Strahlenzentrum   doctors   radiation   experience   internationally   contributions   research   treatment   Dupuytren   radiotherapy   evidence-based