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Advice please - radiotherapy & epilepsy
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08/02/2012 12:44
RedHed 
08/02/2012 12:44
RedHed 

Advice please - radiotherapy & epilepsy

Hi, I am new to Dupuytrens and new to this site.

I am 57, live in the UK, I`m epileptic and have been taking phenobarbital since 1968.
My NHS consultant confirmed my Dupuytrens in both hands last week.

I have one firm node on my index finger of my right hand that I noticed last October - I thought it was RSI because my work involves constatnt PC mouse clicking. I now have several soft tomato spots on the palm of the same hand.

On my left hand I have one very firm node central palm that I noticed about 8 weeks ago, and already the cords are developing, but so far no contracture. Neither hand is painful.

In 2003 I had breast cancer, with radiotherapy treatment, and was told that if the cancer re-occurred in the same breast that I would need to have the breast removed because local surgery or further radiotherapy would not be possible.

The consultant that I saw last week advised me against radiotherapy on my hands as he said that it "fries" the blood vessels and makes any further necessary surgery extremely difficult - this fits with what I was told after the breast radiotherapy.
He suggested getting a second opinion (NHS).
He also said that I would be an ideal candidate for Xiaplex.

Having done research on this site and others, my brain is saying GO for radiotherapy, especially as time is critical, even if it means travelling to Hamburg.

I`ve also read that just changing drugs from phenobarbital to a different anti-epileptic can make the Dupuytrens regress, though I`ve resisted this for many years purely because I need to drive, and changing drugs might make me unstable. If I have even one fit I will lose my driving license.

So much to think about!
I`m a very "manual" person, do a lot of knitting, sewing, fine work with my hands.

Would really appreciate any comments / advice as I don`t know anyone else with this condition.

Thank you,
RH

08/02/2012 16:44
spanishbuddha 

Administrator

08/02/2012 16:44
spanishbuddha 

Administrator

Re: Advice please - radiotherapy & epilepsy

Welcome to the forum RedHed

Sorry to hear your diagnosis. I'm not sure what to advise about the drug choice with the epilepsy and the link to DD. One to discuss with your GP and epilepsy consultant.

You do have some choices with the DD though, starting with do nothing but monitor it and wait to see how it progresses. Start keeping a monthly photo record. Of course you don't want it to progress to a contracture, and it might not, but you can use some time to plan the first treatment you will have.

There's lots of information here on this site, and the British Dupuytren's Society has produced a leaflet http://dupuytrens-society.org.uk/TreatmentD.html you can use to discuss treatment with your GP.

Radiotherapy Treatment for early stage active and progressive disease has the best prospects of slowing progression down or even halting it. The levels of radiation used are very small, not comparable to cancer treatment, and the depth of penetration is restricted to a few mm only. So your consultant (was it a surgeon?) was probably being pessimistic about the future possibility of successful surgery after radiotherapy. Your difficulty in the UK will be getting RT done on the NHS. The treatment has NICE guidance but very few Hospital Trusts are doing it.

After that, it's a choice between NA and Xiapex, for managing relatively small contracture, and this may keep your hands straight for many years. Surgery has been the gold standard in the UK for many years but the availability of these other treatments means that this is now being left for severe cases almost as a last resort.

In the meantime look after your hands. Wear gloves for many things, driving for example. Try to avoid trauma and strain with your knitting and fine hand work, perhaps via new needles and tools with ergonomic grips.

Best wishes

08/02/2012 21:36
RedHed 
08/02/2012 21:36
RedHed 

Re: Advice please - radiotherapy & epilepsy

Thank you so much for your advice.

I`ve felt like a wayward balloon for the past few weeks, not knowing what to do next, especially as my left hand seems to be progressing at an alarming rate.

The consultant that I saw last week was an orthopedic plastic surgeon, but not a hand specialist. I`ve since checked the BSSH site for hand surgeons, and there are 2 locally in Sunderland.

I think that my next port of call should be my GP again, though the NHS is sooo slow!

I was also interested to read your advice on hand protection. I asked the consultant if massaging the nodules might help to break them down, but he didn`t know and could only say that massage helps normal scar tissue. From your advice it would seem that its best not to press or massage the nodules. No heavy gardening then!

08/03/2012 04:22
flojo 
08/03/2012 04:22
flojo 
Re: Advice please - radiotherapy & epilepsy

Hi Redhead,

Welcome to our special club! We're all members and really don't want to belong to the Dupuytren's club, but we're in it together.

You came to the right place. There is a wealth of information on this site and you can use the Search forum option in the menus on the left. You might put in something about RT in the UK. There are others who have been pursuing that. Maybe you can hook up with them.

You can also send Private Messages by clicking on that menu at the top, right of this page.

Sounds to me like you're a candidate for RT. Agree, the dosage is tiny and not deep for this non-cancerous treatment. It disrupts Dupuytren's disease and has a high percentage of success in stopping progression. It is nothing like radiation to kill cancer cells. I had RT for Dupuytren's on my hand. So-oooooo glad I did!

We all have been at the place you are. We didn't know what to do. It seems like you're on a path that you think is right. It sounds reasonable to me. As you research, you'll come up with the best plan for you.

08/03/2012 07:05
spanishbuddha 

Administrator

08/03/2012 07:05
spanishbuddha 

Administrator

Re: Advice please - radiotherapy & epilepsy

RedHed:
I was also interested to read your advice on hand protection. I asked the consultant if massaging the nodules might help to break them down, but he didn`t know and could only say that massage helps normal scar tissue. From your advice it would seem that its best not to press or massage the nodules. No heavy gardening then!
I don't think there is a consensus on whether massage of the nodules helps or not. Some people are offering this as a treatment and claim good results. See also http://www.dupuytren-online.info/dupuytr...s_research.html. Rolling a spiky massage ball on the soles of the feet is recommended for LD so it may help too with DD. But really there is no evidence other than anecdotal.

My comment was really to avoid trauma and strain. There is documented but not proven links to DD and trauma. I too use my hands a lot, and love gardening, and it's so easy to inflict quite minor damage without realising it, so I now use gloves in the garden whenever gripping tools and in cases when I never used to.

08/03/2012 07:32
Lanod 
08/03/2012 07:32
Lanod 
Re: Advice please - radiotherapy & epilepsy

Dear RH,

I also have early DD - diagnosed last October like yourself. I have decided on the RT route based on a study of information on this really informative site. I am really delighted that I have chosen this route as RT is most effective for the early stage DD.

Prof. Seegenschmeidt in Hamburg offers a very cost effective treatment (about 400 pounds per hand I believe) and both hands (if necessary) can be done at the same time.

Can I suggest that you email Prof. S. saying what you posted in your first message to this site. Prof. S. will know if there are any concerns relating to doing RT - based your other health issues.

You will find Prof. S. to be very responsive to emails. Note - Germans like to holiday in August - so it might be good to catch him soon.

I wish you every success in tackling this condition early.

08/03/2012 22:28
RedHed 
08/03/2012 22:28
RedHed 

Re: Advice please - radiotherapy & epilepsy

Thanks everyone for your advice and friendliness.

I`m rapidly coming to the conclusion that RT would be the best course for me, and as I live in north east England, and the NHS RT specialists are way down south, even if I could get NHS treatment its probably just as financially viable for me to hop over to Hamburg.
So I will write to Prof S ASAP. No point in waiting for a second opinion when time is critical.

Is anyone anywhere doing any research on this fascinating condition?

08/04/2012 01:08
GaryBall 
08/04/2012 01:08
GaryBall 
Re: Advice please - radiotherapy & epilepsy

RedHed:
Thanks everyone for your advice and friendliness.

I`m rapidly coming to the conclusion that RT would be the best course for me, and as I live in north east England, and the NHS RT specialists are way down south, even if I could get NHS treatment its probably just as financially viable for me to hop over to Hamburg.
So I will write to Prof S ASAP. No point in waiting for a second opinion when time is critical.

Is anyone anywhere doing any research on this fascinating condition?


Hi red head.....

If it makes you feel any better.....I think where you are geographically it is a no brainer......the trip to hamburg will be easy and prof S. Is a bit of a legend.......

He will provide you with great advice and excellent treatment......

Good luck to you...

Gazza

08/04/2012 06:51
spanishbuddha 

Administrator

08/04/2012 06:51
spanishbuddha 

Administrator

Re: Advice please - radiotherapy & epilepsy

RedHed:
Is anyone anywhere doing any research on this fascinating condition?
Yes, see under the Research tab top of this website. You can view the Miamii conference presentations on YouTube, and a book was published this year based on the conference http://www.springerlink.com/content/978-...6312&page=1

08/04/2012 08:34
wach 

Administrator

08/04/2012 08:34
wach 

Administrator

Dupuytren's conference 2010 in Miami

There is also a conference web site

http://dupuytrensymposium.com/program.html

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