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Radiotherapy
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11/09/2006 20:08
FrederikM

not registered

11/09/2006 20:08
FrederikM

not registered

Re: Radiotherapy



Ok, never mind. I wasn't thinking about censoring, just wondering were the posts were went to

So here, more are less, my post again:

First of all i want to thank you ... for the help. this is really a good way to help each other by sharing knowledge and experiences.

I made appointments with 3 doctors, who should be 'specialized' in Depuytren.
I will aks them all three about what they know and think about radiotheraphy.
I e-mailed a doctor from Germany and he sent me some article and stuff about radiotherapie, so i've got something to show.
First appointment is end next week.

I will keep it updated here.



11/12/2006 22:44
paulina

not registered

11/12/2006 22:44
paulina

not registered

Re: Radiotherapy

Does anyone know of radiotherapists in the US and if so, where? thank you

11/13/2006 13:47
Wolfgang

not registered

11/13/2006 13:47
Wolfgang

not registered

Radiotherapy where?

Paulina, read what Issleib wrote in this thread on 2 Oct. It might guide you to find someone in your vicinity. So far there is no list of radiotherapy institutions in the US available and we are eager to hear about your findings!

Wolfgang
PS: at least we name on our web site two clinics in Montreal/Canada ...

Quote:



Does anyone know of radiotherapists in the US and if so, where? thank you


12/05/2006 13:12
Issleib 
12/05/2006 13:12
Issleib 
Re: Radiotherapy

Someone asked about the cost. I just received my "explaination of benifits" from blue cross. The total bill for both hands was just over 13,000 dollars. CRAZY. But blue cross acceped the bill with out any questions and I owe just over 100 out of pocket. Unless you are in an HMO do NOT go looking for prior approval. My husband worked as a physician reviewer for blue cross for a bit and believe me I learned how insurance works. Just let the hospital submit the bill and if it gets denied appeal it. It is much more likely to be paid that way

01/02/2007 17:14
zumbruk 
01/02/2007 17:14
zumbruk 
Re: Radiotherapy

I had corrective surgery for Dupuytrens in my left large toe, about 6 years ago, and although there has been some recurrence of nodules, the "clawing" of the toe has not returned. Last week I got confirmation from my GP of what I already suspected - the lumps in the palm of my right hand are Dupuytrens. I already have some "clawing" of the little finger on that hand. My GP's suggestion was to return once the finger was bent at some 20 degrees & he would refer me for surgery.

Having discussed this with a friend who's had similar surgery, I'd quite like to talk to someone about radiotherapy. But ... is there anyone in the UK doing this?

(BTW, I'm 52, male, live in the UK and am right handed.)

01/03/2007 09:13
Nigel 
01/03/2007 09:13
Nigel 
Re: Radiotherapy

Hi Zumbruk

I don't think anyone in the UK does this. I went to the Queens Medical Centre in Nottingham when I was diagnosed. The consultant said their only option was to wait until it progressed then have surgery. I went to Essen, Germany, and had radiotherapy. The nodules stopped growing and the cord went soft and has stayed soft. I've my one-year checkup at the end of this month in Essen.

Nigel

ps Ironically, the equipment used in Germany was made in Surrey!

01/03/2007 14:16
Issleib 
01/03/2007 14:16
Issleib 
Re: Radiotherapy

This probably belongs under Ledderhosen but I'll put it here under radiotherapy. I've had my 3 month follow up for my radiation therapy for my hands. Everyone is so pleased at the very obvious improvement that they have agreed to treat my feet. I start Monday.

02/09/2007 13:56
Peter 
02/09/2007 13:56
Peter 
Re: Radiotherapy

I was so excited by the start of my treatment that I posted under "Re: Newbie --diagnosed today" - soz !

Anyway - the post is too long to copy and place here... but please check it ouT!

Had nothing BUT positive feedback from the Professor treating me! and after two RT sessions... DC nodules already softer (I suppose when you nbombard them with millions of electrons... that's what happens... I suppose "the Microwave" effect)

02/09/2007 14:24
Issleib 
02/09/2007 14:24
Issleib 
Re: Radiotherapy

I have had the first 5 radiation treatments on both of my feet. I didn't get the dramatic improvement that I did on my hands but I guess I really didn't expect to because the nodules were so much larger. But they shrunk and got a lot softer and more comfortable to walk on. A couple weeks after I had finished one nodule on the ball of my right foot grew back quickly and was quite tender for a week or 10 days but that has setteled back down and is still more comfortable now than before I started treatment. There has also been a little atrophy of the surrounding tissues. I go back to start the second round Feb 26th. I can wear walking shoes with arch supports again. But my feet are different and I will need to get new shoes for anything really active. I will have an appt with my daughters foot guru To get new hikeing boots in april.

02/09/2007 14:42
wach 

Administrator

02/09/2007 14:42
wach 

Administrator

shoes for Ledderhose

Issleib, the two Yahoo groups that we cite with regard to Ledderhose on our forum page have recently discussed shoes and inlays a lot. Maybe it could help you to choose the right shoes.

Good luck!
Wolfgang

Quote:



I have had the first 5 radiation treatments on both of my feet. I didn't get the dramatic improvement that I did on my hands but I guess I really didn't expect to because the nodules were so much larger. But they shrunk and got a lot softer and more comfortable to walk on. A couple weeks after I had finished one nodule on the ball of my right foot grew back quickly and was quite tender for a week or 10 days but that has setteled back down and is still more comfortable now than before I started treatment. There has also been a little atrophy of the surrounding tissues. I go back to start the second round Feb 26th. I can wear walking shoes with arch supports again. But my feet are different and I will need to get new shoes for anything really active. I will have an appt with my daughters foot guru To get new hikeing boots in april.


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