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Aussie needs your experience
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01/21/2012 18:54
vijaicroos 
01/21/2012 18:54
vijaicroos 
Re: Aussie needs your experience

Hi every one,
how are you all? I am happy to be a member of the forum. I finished my BSc. Radiation therapy in Sri Lanka. Now I am in the states. Does anyone know the basic requirements to apply for the ARRT examination?

01/21/2012 21:43
Anthony 
01/21/2012 21:43
Anthony 
Re: Aussie needs your experience

Hi All
Still keen on finding out if anyone has been able to have their second round of treatment back in AUS after seeing Seegenscmiedt for the initial assessment and round one.
Hi Newman, also still keen on hearing your order of progression and time frames for surgeries etc. What has your progress been like since your RT treatment in 07. Remission of those parts treated? Other growths in new areas? More surgery?

Regards
AB

01/22/2012 02:07
Cyclist 
01/22/2012 02:07
Cyclist 

Re: Aussie needs your experience

Hi Anthony
If you have an aggressive case, all the more reason to visit the international expert. You'll never have regrets or 'what if' feelings that way, because you'll know you've had the best possible treatment.
My 2 treatments for both feet in Hamburg (from Sydney) cost AUD $4000 in (the cheapest available) airfares and $3000 in treatments (including one MRI, which cost AUD $750), accommodation about $350 per week and food is cheaper there than in Aust. This was when the exchange rate was 70-75 Euros.
You could do a search for my previous post on this, but the travel, accommodation and flights, although not able to be claimed through my Australian private health insurance, was a tax deduction come tax time, so I effectively got 30 per cent of back.
Prior to visiting Prof S, I did contact Dr Borg, who was very forthcoming with information. As you know he follows the German protocol, but told me he only leaves 6 weeks break between cycles as there is no evidence to suggest any reason for a longer duration. Prof S disagrees, as his experience dictates the skin requires longer to recover. This has not yet been proven scientifically, it's just Prof S's 'experience' at this point.
I understand radiation oncologists to be highly educated and skilled professionals, capable of reproducing the German protocol. However, I opted for the 'no regrets' option, based on a decision that experience with the condition does stack up to the best possible care.
I hope this helps and all the best in making the decision that's right for you
Di

Anthony:
Hi Larry,
I'm certainly looking very seriously at Hamburg, and if I'm not convinced of Dr Borgs creds I will need to bite the bullet and go. There are significant cost and time constraints in going to Germany ( posssibly up to $9000 difference as our insurances will not cover overseas doctors). I'm hoping Newman or some other informed reader may be able to give more info on Borg, and I will be giving him the 'third degree'. If he is a true professional and has researched and used Seegenscmiedt's protocols and has reasonable experience, Australians like myself will need a "Seegenscmiedt" here in Australia during our lifetimes.
Thanks Again
AB

01/22/2012 09:03
Anthony 
01/22/2012 09:03
Anthony 
Re: Aussie needs your experience

Hi Di
I really appreciate your opinion and information. Everything you have said makes sense. This certainly is the sort of disease that could bring out all types of regrets should too many poor decisions be made. Knowing that you've done all that you can is all we have.
Mind you, after spending many, many hours researching the disease and treatment options over the Christmas break, I'm looking forward to finalizing a plan for treatment so that the mind can have a bit of 'time out' as well. That makes your reminder of "no regrets" even more relevant.

Thanks again
AB

01/22/2012 10:50
newman 
01/22/2012 10:50
newman 

Re: Aussie needs your experience

Hi Anthony,
Firstly Dianne raised an important point about claiming the treatment on your tax return something, that has not been raised before. Briefly I discovered the beginning of Dupuytrens in one hand about 6 months after a motor cycle accident, then I was about 35yrs of age. I watched the progression ,not needing surgery until my early 50's when I had contraction . Each procedure lasted about 18/24 months before the next procedure involving repeat ops and then skin grafts. In 07 after a repeat op on my right forefinger it triggered numerous nodules adjacent to the surgery and in the forefinger of the left hand. In 2000 I developed a nodule in the arch of my left foot and by 07 a lump developed in ball of the right foot. In mid 2007 I had the 2 session 5X3 Gy option and infact in the right hand I only received the total of 15 Gy.(Did not require the second RT ) With regard to Dr Borg up to 2007 Prof Seegenschmiedt was allowing 6 weeks ,before the next treatment. He published a paper in 2000 and that was the time frame he was suggesting . When I met Prof. Seegenschmiedt we decided that 3/4 month between treatments would be OK when I would return to Germany.We discussed the 3/4 month between sessions may even give a better chance to see the benifit of RT from the first treatment. I would not worry about the 6 weeks between treatments, because in the other protocal there is one session of 7 days X3 Gy. An important point not to be missed is the RT is best in the early stages ,when you feel the disease is active and you can feel something going on . in my case I had a constant itch , funny feeling deep in the hand. Finally Prof. Seegenchmiedt explained to me, that it is hard to palputate your own hand to identify the forming nodules yourself. He explained the example of running your fingers over the surface of a ripe peach , where one could identify the imperfection in the form of bumps etc. Your partner could do this for you and using a fine ink marker identify the areas allowing a few millimetres outside of the nodule. Lay your hand on the photostat machine /towel covering the hand and print for this for own your records.
Regards from Germany where I am at the moment .
PS I have had no further treatment and have full use and strength of my hands .Feet OK as well.

Edited 01/22/12 16:44

01/22/2012 12:34
Larry 
01/22/2012 12:34
Larry 
Re: Aussie needs your experience

THX, newman, cyclist and all others from Down-under !

You should get a few dedicated physicians over to Germany to be trained at a German site (Hamburg, Offenbach etc.) on issues like palpation, documentation and proper RT field allignment and then have them distribute their knowledge to other doctors ... Apparently this seems to be the only way to avoid the "give it a trial ..." approach. All AUSSIES should collect their data together and approach their health authorities ...

In Germany both Dupuytren and Ledderhose Disease are (less) well known diseases and radiotherapy is paid by the health insuarance.

Edited 01/22/12 14:37

01/22/2012 17:15
newman 
01/22/2012 17:15
newman 

Re: Aussie needs your experience

Hi Larry,
Prof. Seegenschmiedt often joked he would love to come to Australia to spread the word between Oncologists and Surgeons but alas the cost. Many German doctors visit Australia working up to 5 yrs. I think the Aussies pay more than in Germany.
I thought I would post a short insight into the Aussi health system as I believe you are in the profession. In 1975 the Aust. Govt implimented a Universal Health Care system called Medicare for everyone. The tax payer contributes 1.5% of the taxable income with the Federal Govt. contributing 8.5% of GDP to the Health Care. There is mix of Private and Public Hospitals. There is a push for citizens to take out Private Health with the Govt contributing 30% of the premium and for 70 yrs.40% of the premium.This is to reduce the impact on the Government Hospital system ,which is free as a Public Patient. I think overall the Australian Health System is world class. We don't have insurance companies operating for profit in the health care as is the case in Germany so the premium is lower.The employer does not make any contribution. Average Family Top cover irrespective ,if spouse works with or without children the cost is around $4000Au. Unfortunately Germany does not have a Reciprocal Health Agreement with Australia . For me to take up German Health care for my wife and I the cost is in the vicinity of $24,000Au. We must take out International Travel Insurance each time we come to Germany,which does not cover a pre-existing illness. It is very complex. Regards.

Edited 01/22/12 19:31

01/23/2012 03:30
flojo 
01/23/2012 03:30
flojo 
Re: Aussie needs your experience

Callie,

RE:

Quote:
Has RT ever failed? I am still troubled by people reporting excellent results. If I would have had RT in my right hand 15 years ago I would have been screaming from the highest mountain about how successful it was 15 years later, that "RT stopped the progression". Well, I didn't have RT 15 years ago and my Dupuytren's in my right hand has not advanced any. It is exactly as it was 15 years ago. This occurred at the same time my left hand (little finger) contracted to 90 degrees. My two hands were parallel in progression, one stopped and one continued to progress.

My question is, "how is the unknown progression figured into the endorsement of RT?"

Quote

I have thought for quite a while that it would be a good study/research to survey this Forum with the anecdotal descriptions various patients have given about the results of RT on their Dupuytren's and LD.

You ask the question that is basically the same as "How can you prove a negative?" In my case it is a one for one success rate, therefore 100% based on the results I sought. My goal was to at least slow the progression of Dups or hopefully stop the progression. I got more positive results than I sought.

Within the first week of treatment, the crawly, itchy feeling in my palm stopped and after the second week, nodules began to reduce in size and hardness. Improvement continued for 3-4 months during which time my grip returned to pre-Dupuytren's strength. My grip wasn't measured with an instrument, so I can't say for sure, but my opening a bottle of water was a test and was my measure. I had lost grip strength with the active Dups and could not open a bottle of water, and I did not even realize that weakened grip was a symptom of Dups until after RT when I could open a bottle of water. I can still open a bottle of water 2 1/2 years later. Also, 4 months after RT, I had nodules disappear, others get smaller and I had no more nodules in 2 1/2 years now in the irradiated area.

All the radiologists/oncologists say Dups must must be active for RT to be effective. I had 3 nodules total in two quadrants of my hand in May of '09 and by July '09 when I had RT, I had 9-12 nodules and scattered in every quadrant of my hand. Mine was clearly active and I believe that contributed the success I had.

It is important to get RT while Dupuytren's is active. You are right, Dupuytren's could stop progressing for no apparent reason and start back up for no apparent reason. I would still opt for RT if I had active Dupuytren's and am watching my left hand like a hawk. So far, it is active with nodules but only in my forefinger. My palm has cords forming out from my thumb, but RT is most effective on nodules.

01/27/2012 02:44
GaryBall 
01/27/2012 02:44
GaryBall 
Re: Aussie needs your experience

Hi Anthony
I ve just returned from Germany and picked up your post......of course I would be glad to help you any way I can.....my experience in nz is that practioners have limited or no experience in this condition..... I was just grateful that I was diagnosed with a name that I could chase on the net and get some answers.......
For me .......through sites like this....... I made an early decision to get RT........hopefully overseen by prof S. I made a couple of calls to the clinic.......sent some medical notes and photos.......and e mailed with prof s a couple of times....I then booked my appointment and flights......it was really easy no fuss stuff........I am 46....
Prof s did nt guarantee treatment......but with my notes and photos he said I was avoid candidate......thinking logically.....our challenges regarding location.....should nt affect clinical diagnosis.....
When I arrived my ledderhose was diagnosed...... And early stage n dups diagnosed in both hands.......the prof has an easy 6 point system to evaluate if RT is appropriate....... My feet scored 4&5...... My hands.....2.......the feet then had RT
........and the hands did not at this stage......
I am I pleased with my decision to go to Germany?"????....absolutely!!!!!!!!........the prof is a top bloke........who clearly knows his way around this stuff.......I saw 7 medics in nz.......all I was able to get was poor advice and a possible name of the condition......I cannot stress enough the importance of experience in treating this for a favorable outcome...

I hope this answers some of your questions....

Gary



Hi Gary
Good to hear from you. What were your options in NZ regarding RT - experienced practitioners??
How old are you(if you don't mind me asking)? How much communication have you had with Dr Seegenscmidt? When you get there are you guaranteed treatment or is the visit primarily for assessment? How advanced is you disease?
Sorry for the third degree, but as you know, so much to learn and so little time. Good luck with your trip. I'll be very keen to hear about your experience.
Thanks in anticipation

AB

01/27/2012 03:15
Anthony 
01/27/2012 03:15
Anthony 
Re: Aussie needs your experience

Hi Gary
Thanks for your response.
I am also 46.
I am in the process of planning my trip to Germany to have both hands and both feet assessed. There seems to have been very few regrets from people who have made the trip. We ANZACs need to keep pushing to improve our practitioners knowledge and experience 'downunder' for our future (and our kids) benefit.
Let us know how the treatment works out.
AB

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