Shoulder Surgery/info on exercises/stories etc.

[hannah]

Hi EG,
I'm glad physio seems to be helping - albeit slowly.

I got my shoulder MRI scans off the local rheumy today. apparently nothing is torn or anything, but everything is loose. He said I have 2 options. lots of physio, or surgery - I said physio please! and he agreed. But I am feeling strangely glad that my shoulder is so loose they would consider surgery. It makes me feel less like I'm making a fuss about nothing.

Hopefully his referral will reach someone helpful....

[Englishgremlin1]

i know what you mean about being strangley glad - I felt the same - a bit like finally they recognise something is really up and are serious about helping.

[janey]

I am so fed up with shoulders and they're not even mine! My poor Rosie is suffering daily double shoulder dislocations and the next step seems to be Botox. I have just re-read all of the postings and am so unsure of this but it's been recommended by Stanmore with a possible arthroscopy repeat. I feel so useless as a mother and want to help her but apart from regular pain killers and muscle relaxants and heat packs, there is little I can do. I just want to take her pain away.
Sorry for the whinge but am so fed up with it all at the moment.

[aninja]

Hey Janey,

I have had problems with my shoulders for as long as i can remember and I have had 2 shoulder surgeries, never had botox.

Stanmore has a very good reputation, I know that Prof Bird has referred at least one of his patients for botox on shoulders there. He did so when I was an in-patient and believe me the Bird doesn't send us on wild goose chases!

I think you are in fairly good hands at Stanmore so try not to worry so much, if you want to chat about shoulders feel free to PM me and i'll let you have my msn address.

Hope all goes well for Rosie(how old is she?)

aninja
xx

[Englishgremlin1]

I wasn in Stanmore for Rahab and they have a top team. I was not there only for shoulders but they appered to have a lot of shoulder patient.

[Rosie]

Hi all

I have only good things to say about Stanmore. Our experinece was my daughter's 4 weeks stay there for her spinal surgery and recovery last year, but the general level of understanding of HMS/EDS among the staff there was very good. She was referred there by UCLH where she was seen for her HMS. It was so reassuring to find an orthopaedic surgeon (and team) who knew the problems of HMS.

Rosie

[janey]

Had a very positive Stanmore appointment today. Saw a lovely physio who has shown Rosie how to relocate a shoulder herself (have yet to put it into practice but it worked when we were there). She has also shown her how to get out of bed safely thereby reducing the likelihood of dislocating.
It always feels so good when this condition is treated seriously but also practically and makes such a difference to our daily lives. I told them that I really want to get back to work but was concerned about Rosie coping on her own in the morning (her worst time) and to get practical help like this really helps me to feel that I can go back to work and for Rosie to feel more independent.
Stanmore rocks

[Englishgremlin1]

I am glad it ws so positive for you.

One possible for the future if you want to get back to work would be to look at some care helpso that you get some support and time off duty. Could be worth a chat at Stanmore who could recomment this in a report to your doctor. It is harder to ignore a specialist letter!

[nonyanomemory]

Just wanted to say English Gremlin what a brilliant suggestion.

Please forgive if i am posting/spelling oddly tonight but am using only one eye at the minute.

Janey I am so pleased that finally finally someone is helping and appropriately. Onwards and upwards as they say. two hugs - one for each of you.

nonya

[janey]

Thanks EG and Nonya. The new thing worked today and we got Rosies shoulder in within 5 mins and without any major handling of the joint. I have to put pressure on her Lat Dorsi muscle so she gets feedback and she then works at relaxing it, the shoulder then just slides into place and she does the last bit by moving her arm in a particular way.
EG I didn't really understand your suggestion (sorry if a bit thick). Were you suggesting that Stanmore can recommend help in the home for Rosie? Is that sort of thing available? It sounds good if so but so far have only managed to find an alarm system that connects to a care agency which I would have to pay a monthly fee for.
I feel me going back to work would be positive for both Rosie and myself but we are in a bit of a catch 22 as she still needs help with most things but I also need to earn money.
Thanks again guys - you rock too!!

[Ruby]

I just wanted to peeps know that shoulder stabilisation has worked for me

Both my shoulders have multi directional laxness. I had an op in March to tighten the ligaments etc on the front of my Left shoulder. My surgeon is amazing and the first professional I have encountered who is not only sympathetic to my HMS problems but is knowledgable too! He wuldn't let the hospital physio near me as she knew nothing about HMS. He told her she could make it worse and not to come near me. Amazing!! Although I am still trying to find a physio who has a specialist knowledge in hms.
The surgeon did not offer me a magic cure but the possibility that an op could work even for a short period to improve the quality of my life. It has - one shoulder no longer pops put or puts pressure on nerves.The movement is restricted which makes dressing difficult but the difference is the pain. I would have struggled anyway but now the pain is lessened. It may not work for long coz everyone of my limbs is turning to chewing gum at the moment but I am going to see how I feel next year and then get the other shoulder tightened too. I am still just as weak in the arms and cant lift things but again like I said it reduced the pain/pressure/tingling horribleness!

If anyone wants more details just let me know.

Ruby

[janey]

I came on here to have a bit of a whinge but then read Rubys' post and feel better already. I'm so glad it worked for you and I really hope it keeps your shoulder in place for a long time and that you enjoy your pain free time.
I was just going to update on Rosies' shoulder probs as was feeling a tad depressed after our UCLH appnt today when they said there was nothing more they could offer her and that her shoulders were the worst they had seen The consultant feels certain that Stanmore will be offering her further surgery as conservative approach did not seem to be working. He was quite shocked that both her shoulders are dislocating simultaneously, at least 3 times a week which obviously makes physio much harder to do.
Rosie has really strengthened all of her other joints really well and can walk quite well these days, it's just these bloomin' shoulders!!

[EmilyJ]

Hi all, I had an accident which meant my shoulder dislocated, my shoulderblade shattered and I tore all the muscles around the shoulder. I had morphine there and then and they had to give me three injections before I stopped screaming. After that I saw a specialist who was next to useless to be honest. He didn't advise me to have physio and just said to leave the arm alone so that it could heal. It came out of socket twice that week and each time I was back up to AnE and they put it back for me with the use of gas and air. I saw the specialist weekly and he was no help at all. He prescribed me to be on Voltarol and Kapake and said to take them all the time - but I only took them when I was actually in pain cause they made me rather 'stoned' which made college and work difficult to manage. After that it began coming out of socket everyday sometimes it was up to eight times a day, every time I lifted it it would drop out and I would just push on it to move it back. The specialist then said he did not believe it came out that often cause I had not visited AnE for it, but to be honest I really didn't see the point. After four years of it coming out all the time and me constantly telling the specialist I was in unmanageable pain he gave me an injection of cortisone which didn't work. I then dislocated my shoulder backwards (something the doctor said was impossible) and so I requested to see a different specialist - one who just does shoulders- he said I had loose joints and there was the possibility that this would happen with all my joints. He recommended surgery to the shoulder.

A month later I had the operation, I almost died during the op as they gave me anasthetic and anti sickness drugs that I am allergic to so I woke after the op in recovery with a tube down my throat. I had pain for months and the physio I recieved was going really well. It was fine for a while but would always be painful in winter.

Now it is messed up again, during a recent shopping trip something inside my arm snapped and I now cannot move it properly and am back to being in pain, due to the pain and subsequent tensing of muscles I have tennis elbow again and am fed up with it lol.

Hopefull;y when I see the orthopod if I take all the info off this site he can help me.

[Spireite]

Ruby, what sort of procedure was that which tightened the ligaments in your shoulder? How is your shoulder now?

[Ruby]

Hi spireite,
I can't remember the name of the op now ( 'multi directional stabilisation I think) but I do remember the surgeon explaining he was going to pleat or shorten tendons to help keep my shoulder in place. Nearly a year after the op I can feel it becoming looser but it is not nearly as frequent or painful as it was before the op.