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Scapulothoracic fusion
Hello to all,
I was just wondering if anyone with FSHD has had or is going to have this procedure, Scapulothoracic fusion. Well anyone with MD, doesnt have to be FSHD. If you have had it could you tell me your experiences. Did you get it done in the UK? Where you offered the surgery or did you have to bring it up yourself? How long for recovery and levels of pain?
I know about a doc in America, Dr Anthony Romeo, who has done a lot of this type of surgery, but I have not heard or found anyone one doing it in the UK. There is an up to date article published by some people at Nottingham Uni but I can only read a little bit of. I have read of some people having it done but not where and by who. Any info would be brilliant thanks.
If you dont know of the surgery here is some info I have found, there is a bit of reading and some gory pics, but if you are interested its a good read.
http://www.shoulderelbowdoc.com/articles/scapulothoracic%20arthrodesis.pdf
and
This is a video that depicts open surgery if you are sqeemish please do not visit this link.
http://www.youtube.com/user/DrAnthonyRomeo#p/u/24/QlF25CBNR3YWW
Re: Scapulothoracic fusionHi WW,
Sorry for the slow response, I’ve just got back from holidays – went home to Australia for xmas
The recent standards of care published for FSH mentions scapular fixation. It says that a recent review concluded that scapular fixation is effective in improving shoulder function in FSH. It should be perfomed by an experienced surgeon and patients considering this surgery should have reasonable upper arm strength and should weigh the potential benefits against the possible complications such as breaks in the wire. When and for whom the surgery is appropriate has not been properly studied and decided, so guidelines are not available but this issue was identified in the standards of care article as something that needs research.
I found this interesting blog from someone who has had the surgery, it is a bit old now though:
http://www.fshers.co.uk/phpbb3/viewtopic.php?f=18&t=67and some interesting comments here:
http://www.fsh-united.co.uk/web46-forum1/viewtopic.php?f=4&t=8
As you say, it would be interesting to hear from someone who has had the surgery, and find out where and who the surgeon was.
Best of luck,
Kristina.Re: Scapulothoracic fusionHi there Kelvidge,
thanks for the links. They are interesting and give a great explination of the op and the physical and psychological envolvement, but do not give any indication of the who and the where This is what I am mostly interested in. I would idealy like to know how often this op is done and if it is done by the same surgeon/s. The more a surgeon does a procedure the better (hopefuly) they are at it.Thanks
WWRe: Scapulothoracic fusionI did not have the op. I recall visiting my GP who asked me to stand and he stood behind me, placing his thumbs on the end of my shoulder blade and pushing them in, I rose my arms but it did not improve the height I could reach – so we agreed that as there was little to be gained it was not worth going forward with the procedure.
I am not sure about how to get the kind of statistics you are asking, sorry
KarenFSH on the board here is also active with http://www.fsh-group.org/ They might be able to give you an idea of how many of the people they know who have had the op, whether it is the same team etc.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
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