Capsular Shrinkage op

[loon]

Site info - click the link for extensive shoulder discussions

I've had problems with my shoulders dislocating for years now, and had a stabilization op (putty plait) on my left shoulder a few years ago. It has restricted my range of movement considerably now (less movement than a normal person!) and has not dislocated since - touch wood! But does still sublux which i can cope with. I am now under a different surgeon for my right shoulder and he wants to do capsular srinkage on it to help stop it dislocating, when i first saw him i decided that i wanted to have further physio first before i opted for surgery. It has now been nearly 4 months and i am due to see him again in a couple of weeks but am still not 100% decided. Although my shoulder hasn't dislocated for a couple of months which is a while for me, it still subluxes frequently and i often find myself grabbing my arm just in time! It generally feels very unstable and i don't trust it (if u know wot i mean). I know that us HMS ers are told to avoid surgery but what are your opinions on this op? As there is no cutting of tendons/ligaments is it so bad? Although my scars stretch quite badly and are unsightly (i've got a few corkers!) they generally heal well and this op would be done key hole. Any opinions/advice greatly apreciated, luv nikki xx

[Shelley]

hey loon
i think there were threads about this op before the boards were hijacked - i've just come out of my sling after a capsular plication surgery - the same operation i had on my left shoulder in nov 04. i went through a similar situation where my right shoulder wasnt quite as bad as my left shoulder had been, but was bad enough to be causing me problems. I decided to quit the dislocating game while my nerves were still in tact, and have the same operation on the right shoulder. and i'm glad i did.

i guess what i'm trying to say is that if your other operation worked so well, by our standards - and subluxing is considered a good result in our condition (there have been so many people with failed op's!), why have a different procedure done... I'd be asking for the same procedure.

ive heard that the shrinkage doesn't work so well because of our collagen problems - and that the procedures where they're actually using stitches etc, while they have their problems with tearing and stretching out - is more successful... but thats just what ive heard, and my experience.

good luck with it !!! keep us updated on ur decision

[nonyanomemory]

(Shelley - there was extensive info on 'shoulders' you are right before the boards went down)

Hi Nikki, this is only my personal experience but I was assessed by an orthapedic surgeon for suitability for this procedure. His speciality was 'shoulders'. He advised that this procedure would not be suitable for 'me' as he felt that due to altered collagen fibres the 'heat' used could cause further stretching thus making the problem worse. I believe there had been difficulties with nerve damage etc, Below is one link which shows research references from 2000 which is around the time he felt unable to do the procedure on me an EDS patient due to the high risk factor. He referred me back for continued physiotherapy and intensive work on -good shoulder behaviour and retraining muscles which support the whole area. Whilst I do have chronic multi-directional shoulder instability I found this method helpful and whilst it hasn't cured the inherent problem it has helped somewhat.

shoulder link op. Now this is obviously one piece of research but it is worth reading to the end. It may be that things have now changed with further advances in controlling the temperature during the procedure and it would be well worth investigating this issue perhaps even discussing it with the surgeon for clarification and what his history of previous success is on other patients with hms/eds rather than trauma or sports injuries.

Others experiences may differ so a wide range of opinion and experience would be helpful to you in the decision making process for you. Something which is recommended I know with EDS patients is personal account of others experience unfortunately for you the ultimate decision of yay or nay is up to you. Good luck with whatever you decide and let us know.

I hope I have been a little helpful.

Kind regards Nonya

[vickers]

Hi Loon,

From personal experience I wouldn't have either of my shoulders operated on again. I had 2 capsular shrinkage ops on my right shoulder which immediately started dislocating again (before I came out of the sling with the 2nd one). I then had an open stabilization procedure on my right shoulder which worked for a couple of years. I have since had my left shoulder stabilzed by the same method. Unfortunately both shoulders have once again become very loose even with a lot of physio to strengthen the rotator cuff muscles. This may be down to the increased work my shoulders have had to do over the last 2 years to keep me on crutches and propel myself in a wheelchair (which I can no longer do without dislocating my right shoulder).
However, this is just my experience and of course it's never the same for any 2 people. I would be interested to know how you get on, please keep us updated and do feel free to ask any questions you think of.

Best wishes,

[jayne]

Hi Loon, I had a Bankart repair to my right shoulder 6 years ago it was ok for about a year then I stretched out of it. I have seen 3 surgeons two local and one in nottingham all have advised against further surgery especially capsular shrinkage due to the way it weakens the structural collagen.
I still do daily exercises to try to controll my shouldres and shoulder blades, I learnt these when I was refered to Nottingham city hopsital for a weeks physio at the shoulder and elbow unit, i found it to be beneficial as I still incorperate these into my daily physio.

What Nonya said was totally spot on, surgery is something I feel is best avoided unless all other avenues have been explored.

[loon]

Thankyou everyone for your replies, I am going to do more research into this op before i make a decision and would still like to hear anyone elses experiances/opinions as i feel this is the best way to learn about the op (1st hand so to speak). The surgeon did not want to do the same op on this shoulder as he felt it restricted my movement too much, He said the idea is to stabilize the shoulder without exsesive restriction with the range of movement (sounds good in theory but can it really work i wonder). I feel that if i don't give it a go i'll always wonder if it would have worked and maybe regret not doing it. I think that any ops would heal better while i'm young (ish - 26!) and so don't want to be doing it after another 10 years of dislocating and find it doesn't heal well, on the other hand i don't want to do it now and have it go wrong and end up being worse! I suppose thats the gamble i have to take - either way. Thanks again everyone it's great to have support of others that are in or been through the same situation, and any other experiences are greatly welcomed (now if i waved like that my shoulders would go awol!!)

[linzi]

Sorry if im being a bit blonde here but wats the diffrence between a capsular shrinkage and a capsular shift
I had a capsular shift on my right shoulder last january and i know its only been a year but so far had no dislocations or subluxions.
Im going in to hosp on tuesday to get a capsular shift on my left shoulder (getting nervouse now lol) i had no doubt about getting it done again cause every thing seems to have gone really well with my right shoulder.

[g.murphy]

i had thi done on my right shoulder in 1998 and it was fineup until the end of last year when i had to have a bankarts repair and LSAp repair done as well as this again. i think tat you have to be fully prepared for a 6 week period where you cannot use your arm at all and then a long recovery period.

[aninja]

Hi Loon,

I had the capsular shrinkage operation in 2000 and it was fine until a few years ago. I had the capsular shift operation in january 2009, to be honest ,most of the capsule was disintegrated and it is already subluxing again. I am unable to do physio exercises because my shoulder just pops even with very little movement.

I saw prof Bird a few weeks ago and he agrees something needs to be done but explained that when you have surgery on soft tissue, the healing process normally involves collagen coming back stronger and thicker, however we(hms/edsers) are relying on faulty collagen during the healing process.

Prof Bird did say that he knew of a surgeon in Liverpool that has had a good success rate with hmsers and has referred me to him, I am still waiting for the appointment so not sure of his name. Prof also said I may have to compromise with lack of movement if I have anything done surgically. Liverpool is a long haul for me but I would rather go to a surgeon that I know has had a good success rate in these cases.

So maybe the answer is not the surgery but the surgeon! Have you asked the surgeon how many people he has done the operation on with hms/eds and the success rate in these cases?(most good surgeons will not mind you asking!)

Do you see a hypermobility specialist, was the referral done by them? If you do see a hypermobility specialist, you could always ask them the name of a surgeon that they recommend for this type of surgery.
Remember now that:
1: you have the right to see any specialist you want to, anywhere in the country - just give the name to your gp and they should refer(i see specialists in Leeds, Birmingham, Nottingham(3 different hospitals) and soon Liverpool and London)
2: you have the right to a 2nd opinion

Will PM you when I get the surgeons name.

Linzi, hope this answers your question:

A capsular shrinkage is done by heat to shrink the capsule, you can realistically get a 15-40% reduction in the size of the capsule with this method
A capsular shift is done by cutting the capsule, overlapping it and sewing the capsule back together again, this way they can reduce it as small as they want to
Hope this helps

aninja
xx