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Hamburg clinic email?
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12/07/2016 17:50
dupfortem 
12/07/2016 17:50
dupfortem 
Re: Hamburg clinic email?

Thanks for the information Stefan. I just have nodules at this point. One in the PIP of my right 5th finger noticed one year ago, and I think a few in each palm based on my own checks recently. My 4th and 5th fingers on both hands don't extend as much as the others but they can still raise slightly off the table and they don't have any fixed curl, but when relaxed they do curl more than the others, but I can straighten them. Some pain at times in the PIP nodule area. My palms burn at times when I am highly stressed so don't know if that's connected to the disease or to my worries as I have experienced pain from purely psychosomatic stress before.

I was told the steroid shot was not appropriate by the doctor's nurse today, but that she would examine me for the other nodules tomorrow. I hope to get an ultrasound or some less subjective proof that can help pave the way for RT somewhere. I am terrified it will progress before I can get RT and will require even more money and have less chance of success. I missed the treatable windows on two other issues in the past and am in constant pain and disability as a result. I think 3-4 months would be the soonest I could possible get to Hamburg or one of the other clinics. Do you think that's soon enough?

Would you be able to estimate a daily accommodation/food/local transport cost for Hamburg for example? I haven't been to Germany for many years and am out of touch with prices. I can't manage the bustle of a hostel these days but a cheap hotel is all I need and I would shop at Lidl or whatever cheapest supermarket was close and not eat out much. I'd take buses/S-Bahn/U-Bahn etc. Whether I would end up coming from the USA or having moved to Europe by then those costs would be the same...just transport there is the difference.

I figure I have LD as well based on what I read here and feel on myself. So I guess I'd have to double the treatment costs if that were true? 700 Euro or so for hands each time and 700 Euro or so for feet each time?

Edited 12/07/16 19:52

12/07/2016 19:23
Stefan_K. 
12/07/2016 19:23
Stefan_K. 

Re: Hamburg clinic email?

dupfortem:
I was told the steroid shot was not appropriate by the doctor's nurse today, but that she would examine me for the other nodules tomorrow. I hope to get an ultrasound or some less subjective proof that can help pave the way for RT somewhere. I am terrified it will progress before I can get RT and will require even more money and have less chance of success. I missed the treatable windows on two other issues in the past and am in constant pain and disability as a result. I think 3-4 months would be the soonest I could possible get to Hamburg or one of the other clinics. Do you think that's soon enough?
I am just a fellow disease sufferer with further advanced DD, but from what I have read about typical evolution and considering that my own right hand was treated, apparently successfully, nine years after diagnosis and more than one year after the first NA, I would say most likely: yes.

dupfortem:
Would you be able to estimate a daily accommodation/food/local transport cost for Hamburg for example?
The big online hotel booking sites have rooms from 30 to 40 Euros per night, to be multiplied by 5 (in Sunday, out Friday).
On a budget you can get by for food at the same cost as at home, if need be. I wouldn't factor that in as extra cost in that case.
Public transport HVV gets you everywhere efficiently for 27€30 for the entire week and you can buy it online and print it yourself before arrival.
The transatlantic flight and the treatment will be your main expenses.

dupfortem:
I figure I have LD as well based on what I read here and feel on myself. So I guess I'd have to double the treatment costs if that were true? 700 Euro or so for hands each time and 700 Euro or so for feet each time?
If that were true and you decided to get all four extremities treated there would be a roughly 20% discount on the total based on the rate card I was given last year.

I hear what you say about not wanting to miss a window of opportunity based on your experience. But as my very personal opinion I'd say: try to relax if you can and avoid getting hurt more by anxiety than by the potential (but not certain) evolution of the disease itself. You won't die from this one and are more likely to suffer from a heart attack or a stomach ulcer over the anxiety than from the nodules or cords. I'd stay away from the steroid shots and ultrasound and instead try to find an experienced doctor who you can go see at lower cost and who can palpate your nodules and cords. Perhaps someone else can suggest names based on your location.

Stef

12/09/2016 04:54
dupfortem 
12/09/2016 04:54
dupfortem 
Re: Hamburg clinic email?

I saw my local hand surgeon again today to ask questions. Other than the clearly visible nodule in my 5th finger PIP, she thought she felt one in the palm at the middle finger below the MCPJ on the other hand...but couldn't be sure about any others and admitted it's highly subjective when they are small and without cords. I asked her about NA and RT and she said a teaching hospital far away is offering NA but RT isn't really a thing anywhere here. Locally they just do Xiaflex and surgery. She seemed up to date on the literature and had recently been to some conference and said RT wasn't even talked about and that America seems to ignore it in large at this point. She said if I could find someone who would do RT in the US she would support and refer, but realistically it would be cheaper to go to Germany all included for two trips given the costs in the US and there is nobody within even 12 hours driving that are listed as RT clinics in any case.

She didn't seem to think there was any rush given I had no contracture, and offered her personal opinion that RT was still a questionable treatment and didn't feel the evidence was there for it and didn't recommend it. It's confusing because the personal stories on this site nearly all have some reference to going early and not missing the boat but she seemed to think I had no urgent issue. I want to believe I have time, so I can reduce my stress...but I have many months before it would even MAYBE be possible. Seeing people have progression or new development even after treatment in the personal experience section is worrying me as well. Angetori is currently reporting worsening after treatment in the forum. Roger had to go back for a third time which I didn't know was possible. I thought two was the lifetime limit. Alastair had some progression after RT. Just not sure about anything at this point.

In any case I have no contact with Hamburg for some reason as per the message topic. My second message to the one address combo that worked went ignored for a week now. I intend to call them early next week I guess and see if I am not getting through or if the Doctor is on holiday or busy (most people report fast response but there is one reference to a 3 week delay due to him being abroad). I don't want to be annoying but not knowing where the problem is causes great stress as well.

I appreciate everyone's input.

Edited 12/09/16 06:58

12/09/2016 07:47
spanishbuddha 

Administrator

12/09/2016 07:47
spanishbuddha 

Administrator

Re: Hamburg clinic email?

RT is effective in 80-85% cases when it is done early AND there is active progression. It's not clear from your description how active it is. Remember that ProfS does NOT always treat when people turn up. Maybe I have missed your description of active symptoms including recent growth? My suggestion is always keep a photo log and notes of symptoms on a regular basis so that you have an objective record of progression. With one small nodule, unless it has grown suddenly and there is a spurt, you have time. I had a spurt due to mishandling tools with two new angry sore nodules appear over a year ago. They have now settled down, even shrunk a little although I think maybe they are forming a cord. But everyone is different. Now, an email with photos of your hands, notes of other symptoms and timeframe, asking for a consult about RT might get a reply.

ProfS will do a second one half treatment in some cases. There are reports on the FB groups of Radiologists doing second and even third treatments. They are pioneering, but the whole attitude to RT appears gung-ho there IMHO about getting early RT without other symptomatic considerations, or taking into account that for the majority contracture will never occur anyway.

12/09/2016 19:00
dupfortem 
12/09/2016 19:00
dupfortem 
Re: Hamburg clinic email?

Re growth I am not sure. The nodule in the 5th PIP that got my attention nearly a year ago and has slowly grown since then...spread ever so slightly in all directions...maybe 10% bigger than when first noticed. My hands burn and itch now but to be honest that only started after I saw the doctor and learned what Dupuytrens was and read about things here, so there is a strong chance much of that is psychosomatic as there was not a single incidence of those symptoms in the 6 months between noticing the nodule and seeing the doctor when I thought it was just some cyst or something very minor. I have experienced such flares in symptoms after various diagnoses, so I know from experience stress can cause many things. But of course you always think about the worst cause and that being active disease. I don't know if the ones in my palm are growing or not as I and the doctor are not sure how long they have been there, and my attempts to get some scans or objective proof as a reference/comparison have failed. Everything is so subjective until it's dramatically worsening it seems.

I feel trapped in the fact that as you said some people's nodules never worsen and contract. I can wait and see and possibly miss the window, or I can be aggressive and potentially waste a lot of money. No clear answer. If I can stop it or slow it down enough to get through my natural life I feel a lot of pressure to try. But the more I read the muddier it gets and the hopelessness returns. I have never really gotten over any of my pains and disabilities...they just pile up and make life that much harder...another might just crack the egg.

Edited 12/10/16 00:00

12/09/2016 22:22
spanishbuddha 

Administrator

12/09/2016 22:22
spanishbuddha 

Administrator

Re: Hamburg clinic email?

dupfortem:
Re growth I am not sure. The nodule in the 5th PIP that got my attention nearly a year ago and has slowly grown since then...spread ever so slightly in all directions...maybe 10% bigger than when first noticed. My hands burn and itch now but to be honest that only started after I saw the doctor and learned what Dupuytrens was and read about things here, so there is a strong chance much of that is psychosomatic as there was not a single incidence of those symptoms in the 6 months between noticing the nodule and seeing the doctor when I thought it was just some cyst or something very minor. I have experienced such flares in symptoms after various diagnoses, so I know from experience stress can cause many things. But of course you always think about the worst cause and that being active disease. I don't know if the ones in my palm are growing or not as I and the doctor are not sure how long they have been there, and my attempts to get some scans or objective proof as a reference/comparison have failed. Everything is so subjective until it's dramatically worsening it seems.

I feel trapped in the fact that as you said some people's nodules never worsen and contract. I can wait and see and possibly miss the window, or I can be aggressive and potentially waste a lot of money. No clear answer. If I can stop it or slow it down enough to get through my natural life I feel a lot of pressure to try. But the more I read the muddier it gets and the hopelessness returns. I have never really gotten over any of my pains and disabilities...they just pile up and make life that much harder...another might just crack the egg.
Now is the time to start that photo log with notes. Feel your hand(s) or get someone else to do it, mark out the nodules or suspect areas. Make notes of tingling, pain, aches, pins and needles. Take some objective measures of hand and finger spread and flexion (I play piano so know immediately if something is tighter than previous). This way you will pick up signs, or hopefully not, of activity and progression that means RT is a good option at that time for you. In the meantime when not creating or reviewing your log, forget about it!

From a distance, based on what you have revealed, I get the sense you have time to wait before acting, as in months at least, although I have forgotten why did you wanted a steroid shot - is the pinkie nodule causing pain or sore in everyday use?

The other thing is just review to see if any life style changes would eliminate or reduce some of the established risk factors. Wear gloves if doing yard work, DIY, sport, but not overkill just sensible precautions.

12/11/2016 02:21
dupfortem 
12/11/2016 02:21
dupfortem 
Re: Hamburg clinic email?

Took photos today. Tried to scan my hands as I have seen some people do but they always came out weird and squished and not really accurately representing what they look like.

The reason I was considering the steroid is the info said it can sometimes soften and reduce nodules and it was about the only thing I can do "now". The pain is intermittent and not the main reason I wanted it. I thought I heard the doctor say the injection could irritate and spread the nodule as well, but I misunderstood. She said if I wanted one just let her know but I am horrible about making decisions so I put it off for now. I just wanted to do SOMETHING to maybe slow or stop it.

Does typing and writing and other type movements exacerbate anything? I won't be using a jackhammer or rock climbing...but am afraid every time I use my hands now. Even don't want to use the vibrating electric toothbrush.

Edited 12/11/16 04:22

12/11/2016 08:07
spanishbuddha 

Administrator

12/11/2016 08:07
spanishbuddha 

Administrator

Re: Hamburg clinic email?

Everyone and every case is different. Use your hands pretty much as normal. I don't think every day use is to be avoided, but take care with activities that need grip with strength. I play piano and tennis, and am quite active around the house and garden but do wear gloves when handling tools, so for example when I was wielding a saw this week to prune a tree. The do something quest is difficult, as almost nothing is guaranteed to work for everyone. I have tried some of the anecdotal stories, massage with Vitamin E oil, gentle massage, soak in very hot water, etc, and can't really say anything helps except the belief you are doing something. Just be careful not to empty the wallet on snake oil. Have you seen this and related discussion on this forum http://www.ealingmassagetherapy.co.uk/Du...-s-Massage.html

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