Once again it is a small, small world
There were so many people at the Congress in Hong Kong who I had studied with in Budapest. Some of them I have been in contact with over the past twenty years others not.
One of these was Andrea Benyovszky who works in Grand Rapids.
Andrea gave two presentations in Hong Kong. The first I heard, it was about traditional and non-traditional cases in the conductive group. The second about selective dorsal rhizotomy I unfortunately missed because I was in a different, parallel session at the time that Andrea spoke.
Luckily for me I have some readers who are really on the ball. One of these is Kasey Gray in the USA! Just a few minutes ago she sent an email telling me: "I believe that Andrea Benyovszky at CLC in Grand Rapids, Michigan, has been keeping information on the children there and their experiences with SDR". It is lucky too that I have the book of Abstracts from the Hong Kong Congress, so I was immediately able to read what Andrea had presented there. Thank you Kasey for your prompt reply, I shall now email Andrea and see what more she has to tell me. Later I will publish all I can here.
Something that I realise already is that what I read this afternoon in the Britsh Government Reports described as a new treatment, had in fact been first reported back in 1913 and has been commonly performed in the United States since the mid-1980s. How old does something have to be not to be new any more?
I also gather from Andrea's abstract about this procedure that a selective dorsal rhizotomy has not in her experience reduced necessity for other muscle-release surgical procedures in most cases. I am still looking forward to hearing from others on this subject.
Thank you again Kasey for reading my blog and as always being a mine of information, and also to Andrea for providing such a good abstract for her Congress presentation.
I very much doubt whether whether either wing of Her Majesty's Government (either the Cleggies or the Cameroons) has the slightest view on selective dorsal rhizotomy for spasticity in cerebral palsy.
NICE, however, has:
I suggest that you looks at its press release.
It was the NICE press releases that I was reading this afternoon.
I also found a link to a petition presented to Parliament on the subject. I will find the links tomorrow, I have saved it all in another computer to include when I put all the info. together for another posting.
Perhaps report is not the correct word it was probably only a response to the petition, it also mentioned the NICE guidelines in its response.
Thanks for joining in the discussion.
I have been to a presentation Andrea gave a couple of years ago at a Conference in Grand rapids on Dorsal rhizotomy. It was very interesting to listen to and I hope she will be able to pass on some more details on it.
Since then I have seen a couple of children (before) and after they had it done and heard of others by hear-say.
Luckily the children I know didnt have any bladder problem. But because the nerves giving feedback for the bladder are located close to the ones that do for from the muscles, bladder and I think bowel problems are also possible. I think that is a risk worth considering because when it does happen it is devastating for the children who have been toilet trained before.
Better walking skills and gait and improve independence from equipment could be observed in a lot of children but also had to work hard onto in rehab,CE programs, at home and school. So its not an easy fix, by all means and definately not all children become independent walkers as hoped for.
Mostly the operation is recommended when the children are still young. Sometimes I wonder what those huge operations do to young children psychological and I heard that children have reacted with frustration to their "new" less spastic and less strong legs.
Plus the sudden dropping (andrea talked about it too) can also be a problem for the safety of the child and the carer.
In north america at least its recognized that after you have the dorsal rhizotomy done, you will have to have more operations, which usually keep them off their feet for a while and they loose most of their abilities they worked so hard for. Again, psychological this can not be good and I'm still not sure if this follow up operation really is good in the long run (at least I haven't found long-term studies for it).
At least the children I have seen didn't really need the second operation, yes their gait wasn't perfect but they could correct it when they where asked to and they were not in any pain. I feel sometimes surgeons just like to cut and the recommendations to do surgery should be always questions and second opinion should be seeked. And it needs to definitely looked into if those operations are really needed and if the good really outweighs the bad. Because in some cases the children do not get better they get worst and it scars them more then just physically.
Anyway, happy new year to you Susie, mend to comment on other blogs before but dont worry loved them as usual.
Thank you Anne,
It is interesting that you say that in North America it is recognised that more operations will be needed after the SDR procedure has taken place. This is not what I read in the website of one of the leading hospitals that has carried out over 2000 SDRs. They actually say that they experience the opposite.
In Andrea's Hong Kong abstract she states that in her experiences more operations have been needed post SDR
I am waiting to hear from Andrea perhaps she will write something for us here.
It is really interesting that this operation is carried out regularly in USA but that I have never met anyone here in Germany who is even considering it.
Happy New Year, Anne
I just remembered that one if the hospitals in states told one of the families, that because their kid does Ce their recovery process is usually quicker due to their better body awareness. Shame noone ever this either.
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