| We have a date to see the new consultant...... |
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05/07/2011 19:30
ellensmum 
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05/07/2011 19:30
ellensmum
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We have a date to see the new consultant......
Finally we have a date for ellen to see her new consultant 3rd June - i know he isn't going to come up with any miracle cure but you can always hope that a new way of thinking on the problem may help.
Her foot is still intermittently playing her up the tennis ball is helping a bit but not as much as it was when she first started using it.
Does anyone know if any of the consultants in the uk that treat Dupuytrens also treat ledderhose?
Hubby and i are begining to think that if we don't get help from this consultant we may think of looking privately for help for her.
Zoe
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05/08/2011 08:39
newman 
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05/08/2011 08:39
newman
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Re: We have a date to see the new consultant......
Hi,
Take a trip to see Prof Seegenschmiedt in Hamburg. He speaks excellent English and has Published a book in English. In O7 I visited him from Australia and met an English Patient from the UK.
Regards.
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05/16/2011 09:36
ellensmum
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05/16/2011 09:36
ellensmum
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Re: We have a date to see the new consultant......
newman:
Hi,
Take a trip to see Prof Seegenschmiedt in Hamburg. He speaks excellent English and has Published a book in English. In O7 I visited him from Australia and met an English Patient from the UK.
Regards.
Hi Newman that is what we are begining to think is going to be neccessary - we have been away for the week and had a family gathering and i have been talking to alot of relatives about the problems ellen has, they are all a mixed bunch with both ledderhose and dups or both - we worked it out my nan and great aunt were 2 of 10 siblings, 2 died during the war so never made a great age of the 8 left 6 had definite dups and 3 also had ledderhose - my great Aunty Katie had both diseases, she has 3 children all have dups 2 have had major operations and one now is looking that she will have to have treatment/surgery her youngest son has a form of dups and has had ledderhose since around 15 (which i didn't know). She is going to see whether any of her siblings have anyone uk based that they know of that will treat Ledderhose or at least have a look at Ellen for us - I have realised from reading on this site that Prof Seegenschmiedt is one of the best in this field but we don't have private medical cover and i will have to look uk based before we go any further - saying that we have had a very active holiday loads of walking and time on the beach and Ellen's foot has caused her no touble what so ever :0) which is very pleasing.
Will let you know how i get on with Ellen on the 3rd
Zoe
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05/16/2011 16:54
mongoose 
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05/16/2011 16:54
mongoose
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Re: We have a date to see the new consultant......
I am uk ledder sufferer. Unfortunately the only place that will treat me is the Royal National Ortopaedic Hospital, Stanmore. Mr Sinisi is my consultant, but i had to be referred by my family doctor. It's quite a rare condition in uk so i've been told, and local hospitals don't want to know.
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05/17/2011 12:53
ellensmum
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05/17/2011 12:53
ellensmum
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Re: We have a date to see the new consultant......
mongoose:
I am uk ledder sufferer. Unfortunately the only place that will treat me is the Royal National Ortopaedic Hospital, Stanmore. Mr Sinisi is my consultant, but i had to be referred by my family doctor. It's quite a rare condition in uk so i've been told, and local hospitals don't want to know.
Hi
Can i possibly ask what reatment you have had or been advised to have? We are now waiting to see a plastic surgeon who wants to do further surgery on the PF in my daughters foot. we are desperate not to have this done because it has reoccured agressively following surgery 3.5 years ago.
Thanks in advance
Zoe
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05/17/2011 18:40
newman
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05/17/2011 18:40
newman
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Re: We have a date to see the new consultant......
Hi Zoe Australia Calling. I have had some 15 hand surgeries including 4 grafts. Each surgery comes with scar tissue which in itself has a tightening of the surrounding tissue. I am convinced that in my case each surgery stated the clock ticking towards the next surgery and along with it a shorter span before next and a lesser outcome in the result.
I would just mention when I was in Germany on 07 they had just treated a l2 yr old with ledderhose. Have you made any contact with Prof Seegenschmiedt? He is a very compassionate guy and has a real interest in helping those with Dupuytrens/Ledderhose.
In the publication Treatment of Non Malignant Disorders with Radiotherapy I read that Radiotherapy is used to treat 29 different
disorders. There was mention in Germany at some 40,000 patients yearly, receiving rt. treatment for these disorders. Quite franky we are dragging the chain in our institutions to embrace this treatment for Non Malignant Disorders.
Edited 05/17/11 22:47
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05/17/2011 19:38
Larry
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05/17/2011 19:38
Larry
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RT for Ledderhose in young adults
THX newmann,
for you encouraging words ! I would take anything to get the best advice for my childrenin a desperate situation ... and I think the knowledge and experience from Prof. Seegenschmiedt in Hamburg could be helpful, as he already had some experiences with RT for young adults ...
Edited 05/17/11 22:39
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05/18/2011 03:16
Cyclist
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05/18/2011 03:16
Cyclist
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Re: We have a date to see the new consultant......
ellensmum:
mongoose:
I am uk ledder sufferer. Unfortunately the only place that will treat me is the Royal National Ortopaedic Hospital, Stanmore. Mr Sinisi is my consultant, but i had to be referred by my family doctor. It's quite a rare condition in uk so i've been told, and local hospitals don't want to know.
Hi
Can i possibly ask what reatment you have had or been advised to have? We are now waiting to see a plastic surgeon who wants to do further surgery on the PF in my daughters foot. we are desperate not to have this done because it has reoccured agressively following surgery 3.5 years ago.
Thanks in advance
Zoe
Hi Zoe
I can only agree with Newman and Larry about consulting with Prof S. He has experience treating a 7 year old who has not had any further progression in over a decade. Surely further surgery will just exacerbate the situation for Ellen, who will more than likely suffer re-occurrence and additional problems with scar tissue growth that will result in further functional impairment.
Talk to Prof S. and anyone else you can find about the risks involved for someone so young due to secondary tumours, which are believed to be 'localised' and therefore operable (if they occur - remember, it's just a risk that they may occur). I'm sure he will be happy to start a dialogue via email or phone. Then talk to some radiation oncologists in the UK with an interest in benign conditions or children in particular.
Talk to everyone you can first, and then rest knowing you have made the best decision you were able to make.
All the best
Di
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