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Re: acromiopasty

Posted: Mon Jun 14, 2004 2:23 pm
by m&mmom
Someone correct me if I'm wrong please, but I thought the acromio was done in the UK, however it was only done on a handful of kids.

I haven't heard of any other clinic here in the US performing the procedure. I just had someone ask me the other day if there was anyone else besides Nath doing the procedure and I wasn't aware of any. If any body knows of any other clinic performing this operation could you please post so I can pass the info along. I have already passed along the clinics who are performing the capsule release. She wants to get as many opinions as possible since the acromio is no longer done at TCH.
Thanks.

Cindy

Re: acromiopasty

Posted: Mon Jun 14, 2004 4:54 pm
by admin
The acromio has not been done in the uk as a surgery on its own as far as I know. It is sometimes done if the acromion or coracoid is seen to be overgrown during shoulder surgery. The overgrowth is rarely seen.

Re: acromiopasty

Posted: Mon Jun 14, 2004 5:24 pm
by Karen Hillyer
Professor Birch and Mr Bainbridge (another consultant here in the UK) have been performing corocoidectomy's for about 7-8 years.
The surgery is usually in conjunction with a subscapularis release and in MrBainbridges clinic sometimes with Botox injections.
The surgery is not too invasive and in those children who have it with botox - they are usually discharged from hospital the same day as the procedure is undertaken.
We have not seen large numbers of children with overgrown corocoids and interestingly enough it seems more prevalent in children who have NOT had primary ( nerve graft surgery)
Before surgery, a child is always x rayed and the over grown corocoid process is identified through x ray prior to surgery.
I hope this helps a little
karen

Re: acromiopasty

Posted: Mon Jun 14, 2004 7:41 pm
by m&mmom
Thanks for explaining Karen. That is interesting about the kids who have not had primary.

Cindy

Re: acromiopasty

Posted: Mon Jun 14, 2004 9:40 pm
by admin
My understanding is that the overgrown coracoid process in the UK is actually more of a rarity. As far as I know they do not do the acromion surgery. Also, no other institutions in the U.S. do this procedure either, and TCH stopped performing the procedure back in March/April and have not rescheduled those that were cancelled.

Does anyone in the UK know how many the doctors have even performed over there? I thought I had heard it was just a very small amount in comparison.

Re: acromiopasty

Posted: Mon Jun 14, 2004 10:08 pm
by admin
This is just a goofy comment, but, given all the highly technical jargon we all get into, does anyone else feel like you need an M.D. just to be a parent of BPI child??? I feel like I know more about nerves and tendons than I ever wanted to - not to mention surgical procedures!

Re: acromiopasty

Posted: Tue Jun 15, 2004 6:32 am
by Karen Hillyer
Guest - in the Uk Group we have set up a surgical database on which aprents have listed the surgical procedures their child has undergone and the age they underwent surgery an also the surgeon who performed the procedure.
On the database of parents who have completed the questionnaire we have 6 children who have had a corocoidectomy.
4 children had the corocoidectomy in conjunction with a subscapularis release, one had it in conjunction with a Botox injection and one had the procedure performed on it's own.
Three different surgeons were named as performing the procedure on the children.
There are probably more children who have undergone the procedure, however these are the only ones whose parents have comprised our surgical database.
I am sure that the amount of children is small in comparison to those in the USA - of course our health care system is geared differently to that of the USA and also, our population is smaller too.
Karen




Re: acromiopasty

Posted: Tue Jun 15, 2004 7:52 am
by Kath
Null

I think I need an MD just to be OBPI... LOL... I have learned more about nervers and SD birth in the last 4 years... and in my case more about preemie births and I was never interested in becoming a nurse or doctor... LOL... you are so right! But are so lucky that this information is here for you. My poor mother had no support or information to help her along the way I don't know how she did it.

Kath

Re: acromiopasty

Posted: Tue Jun 15, 2004 9:52 am
by PeggyUBPN
Isn't that true, Kath!

Just on a side note, my daughter had the acromioplasty in December and we are very pleased with the results so far.
Emma's internal rotation is sooooo much better and even though this surgery didn't really seem to have anything to do with her triceps--this is the first sign we've seen of them in her 8 years of being! I'm very glad she was able to have this procedure and I can't wait to see the continuing results.

Peggy

Re: acromiopasty

Posted: Tue Jun 15, 2004 3:21 pm
by Carolyn J
My "2cents"....
Not only am I "seniorOBPI" at 66,I am also a MOM of a 34 yr old son that was born with multiple disabilities and my experience is that without knowledge/information parents don't know what questions to ask AND if parents DON'T ask, our children don't get what they need....
FYI,I never learned how to advocate for myself until 2001 at age 63 and learned that this I was born with even had a name & I now rejoice for everyone here who can get the information they need.THERE ARE NO STUPID QUESTIONS!!Ask away....
Carolyn J