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Hamburg clinic email?
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12/03/2016 21:59
spanishbuddha 

Administrator

12/03/2016 21:59
spanishbuddha 

Administrator

Re: Hamburg clinic email?

I'm a bit puzzled by this. There have been organisation changes there, but you could try the web contact form on the website. http://www.radonknetz.info/de/strahlenze...rg-kontakt.html

Where abouts in the US are you?

12/03/2016 22:28
dupfortem 
12/03/2016 22:28
dupfortem 
Re: Hamburg clinic email?

It's very possible he has received one of the messages but hasn't had time to reply yet...but given the troubles I have had with contacting the clinic in general I can't know where the issue lies. I don't want to annoy him with repeated emails.

I have written to these addresses over the past several weeks:

info@szhh.info
anmeldung@szhh.info
mhs@szhh.info (mistakenly mhs@szlh.com the first time)
*Also the googlemail.com address you gave me in PM.

No responses at all to messages sent from my primary outlook.com account. I repeated the above process with Gmail and got a reply from only the "anmeldung" address that confirmed his googlemail.com address you had given me. But no other replies or information from any of the other messages sent from either account.

I just wanted to speak with him before next week and get his advice on how to proceed, especially the potential steroid injection and it's impact on RT, if any, if I can get to Hamburg eventually.

Edited 12/04/16 00:30

12/03/2016 23:06
Stefan_K. 
12/03/2016 23:06
Stefan_K. 

Re: Hamburg clinic email?

At this stage I would assume he has received at least some of your messages and that he has difficulty giving you advice by email on steroid injections, which is not his area of expertise.

Stef

12/03/2016 23:14
dupfortem 
12/03/2016 23:14
dupfortem 
Re: Hamburg clinic email?

I think it's doubtful he would just ignore it given what I have heard about him and that the message was more than just about the injection. Not knowing if it's not received or if he is just busy is the stressful part. Given the delivery difficulties I can't really assume he got anything. I really wish receipt of messages was positively indicated somehow in email as a standard. It would save a lot of trouble.

Edited 12/04/16 01:25

12/05/2016 11:12
wach 

Administrator

12/05/2016 11:12
wach 

Administrator

Re: Hamburg clinic email?

I wouldn't expect that he would do any consulting via the Internet/email. He would not do it in Germany and even less abroad, for legal reasons. But if you want to schedule a consultation with him in Hamburg the clinic ought to respond. If they don't you might give it a try in Essen where he is working on Saturdays. I believe the email there is radiologie.am.stern@gmail.com but I have no idea how responsive they are in Essen.

Wolfgang

dupfortem:
I think it's doubtful he would just ignore it given what I have heard about him and that the message was more than just about the injection. Not knowing if it's not received or if he is just busy is the stressful part. Given the delivery difficulties I can't really assume he got anything. I really wish receipt of messages was positively indicated somehow in email as a standard. It would save a lot of trouble.


Edited 12/05/16 13:15

12/05/2016 20:03
dupfortem 
12/05/2016 20:03
dupfortem 
Re: Hamburg clinic email?

He seems to have responded to questions from many others, examining photos of their hands and giving advice, one of the RT blogs had such an experience written, and his personal email is given...so it's hard to believe he would only talk to you for the first time if you flew around the world. I did ask the clinic how long it takes to get in and some basic info and haven't heard back.

I really believe he would respond. So he either is too busy or hasn't received the messages due to the technical mess. The stress comes from not knowing which and how to proceed. Will keep trying. Thanks for the additional info Wach.

Which other clinics are as highly recommended?

Edited 12/05/16 22:13

12/05/2016 21:32
spanishbuddha 

Administrator

12/05/2016 21:32
spanishbuddha 

Administrator

Re: Hamburg clinic email?

dupfortem:
He seems to have responded to questions from many others, examining photos of their hands and giving advice, one of the RT blogs had such an experience written, and his personal email is given...so it's hard to believe he would only talk to you for the first time if you flew around the world. I did ask the clinic how long it takes to get in and some basic info and haven't heard back.

I really believe he would respond. So he either is too busy or hasn't received the messages due to the technical mess. The stress comes from not knowing which and how to proceed. Will keep trying. Thanks for the additional info Wach.

Which other clinics are as highly recommended?
Where abouts in the US are you?

12/06/2016 06:07
wach 

Administrator

12/06/2016 06:07
wach 

Administrator

Re: Hamburg clinic email?

As you probably have seen already RT clinics in the USA are listed on http://www.dupuytren-online.info/radiotherapy_clinics.html .

If you are looking for a clinic specifically in Germany with experience in treating Dupuytren's and in dealing with English speaking patients you might also consider Dr. Markus Herkstroeter. His contact details are provided at the end of the US clinic listing. A report and recommendations from a Canadian patient are on http://www.dupuytren-online.info/downloa...y_NA_RT_new.pdf (note that Dr. Herkstroeter has relocated since Jonn's Report and is now located in Frankfurt, not in Bad Homburg anymore).

And there are quite a few more patient shared stories about RT on http://www.dupuytren-online.info/dupuytr...xperiences.html .

Wolfgang

dupfortem:
...
Which other clinics are as highly recommended?

12/06/2016 20:10
dupfortem 
12/06/2016 20:10
dupfortem 
Re: Hamburg clinic email?

Thanks guys. I am sorry if I am coming off difficult or annoying. I had just wanted to be sure of an email and it's become a big hassle. I am so stressed over yet another disability issue and the difficulty accessing care. I don't have insurance and my life is pretty miserable. RT (the only thing that seems potentially able to stop this if caught in time) is out of my reach financially here in the USA. I live in the middle of nowhere with no progressive hospitals that might perform it anywhere close even if I could afford it. It would be cheaper to fly to Germany and get treated than to have it in the USA in my case...but it's still a great stress and expense...and not being able to communicate well with them is making it worse. I emailed the anmeldung address (the only one they replied from over the last month or more) again asking how the scheduling works for consultations and treatments and have had no reply. Just everything is frustrating.

I have a few other disabilities and they were made worse by slow diagnosis, wrong diagnosis, and inaction during the treatable period...so I am more stressed than the average bear over this most likely. I have been through the "new medical problem obsessiveness" thing a few times. I know the sort of reactions and process people go through and how forums are a source of help and of stress. Having more limitations in my hands would just push me over the edge as I am barely hanging on as it is physically and mentally. Have lost career and life from the other stuff already. Just a bit of a wreck and very fearful for the future.

I am scheduled for the steroid injection this week but am not sure its a good idea. I would really like to get some diagnostic proof of how many nodules I may have etc. I intend to ask for ultrasound but am not sure if that's the best choice. I don't know if MRI etc is much better for this...but it does cost a LOT more. I have a lot of pains and symptoms but stress can cause that so I feel I need some black and white information from someone I trust is competent. The doctor I have access to seems to be of the "deal with it and when it's crippling we can cut on you but it will come back" hopeless camp...didn't even mention RT or NA. I likely have LD too now that I know what to look for. It's just all feeling like the straw that will break this camel's back.

Edited 12/06/16 22:30

12/06/2016 21:00
Stefan_K. 
12/06/2016 21:00
Stefan_K. 

Re: Hamburg clinic email?

Don't worry about being annoying. Those who have been through it or are still facing it understand.

There are several accounts here of how the Strahlenklinik in Hamburg works. You can put something like Hamburg patient experience into this site's search box at the top and you will find a long list, including this link:

http://www.pushandpullman.com/dupuytrensradiotherapy.html

You first send in a description of the state of your DD and a couple of photos by email. If it sounds and looks like it is a good idea to have RT, you will get an appointment fairly quickly, but you may want to check flight fares first and then suggest a week that is good for you. Typically you have a consultation with examination on Monday morning and then start the first series of 5 RT sessions the same day if Professor Seegenschmiedt finds that it is the right moment to start treatment. From Tuesday to Friday you can then come in at any time of the day without appointment, except for Thursday or Friday when you will have another appointment with the Professor. You'll have to come back about 3 months later and complete the same in a second series. Count on about 2 x 700€ plus your travel and accommodation expenses.

I haven't followed any description of your hands which you may have written. But if it is not particularly aggressive there are other options for keeping the evolution in check, notably NA if you do develop contracture.

If money is an issue, perhaps save the money you planned to pay for steroid shots.

Edited 12/06/16 23:02

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