collarbone vs. shoulder - advice?

[Janene]

I've seen my Rheumatologist and he wasn't at all happy with the proposed surgery. He said it was far too agressive for someone with HMS and even for a "normal" person. I was so relieved that he agreed with me. He told me to cancel the op which I've done and he's going to find a surgeon who hopefully knows something about connective tissue disorders or even a sports surgeon since they seem to be more conservative. I'm relieved but also disappointed since I now have to start the whole procedure over again and it will be months before I can get something done. It's very painful but I'd rather put up with it and get the surgery I need. I'll let you all know how things go. Thanks again for all your replies.
Janene.

[sarahh]

Hi Janene glad your rheumy wasn't happy about the surgery and it does sound very agressive for you and even a normal person. You take care hun and I hope your rheumy managed to find a surgeon who knows about hms and comes up with the right surgery for you and that it doesn't take too long.

Sarah x

[nonyanomemory]

Hi Janene,

Whilst I understand that your ongoing pain and disability from all this is awful foryou, I really am relieved that the rheumatologist has discussed all this with you and you have both agreed to postpone the op. I really do hope you find a more empathetic ortho!

nonya

[Retro]

Post copied here for board continuity - Site Admin


debbieandsiobhan



Joined: 30 Oct 2006
Posts: 1
Location: west country
Posted: Mon Sep 10, 2007 10:11 am Post subject: unstable clavicle joint

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My 12 year old daughter was diagnosed with joint hypermobility syndrome about a year ago due to leg and knee pains. Three days after diagnosis a child at school bumped her on the back during a netball game and her clavicle shot out at the centre of her chest. It was gross. The hospital were useless and couldn't do anything at first (even x-ray was a problem) and put her in a body sling for 6 weeks - the pain when they said she could move it was horrendous - her arm had wasted away as well. We were both shocked and upset at their lack of knowledge.

Since then her collarbone continues to "pop" out of place on a regular basis and sometimes she can rotate her shoulder and press on it and it goes back in - other times its hours at A & E while someone works out what to do (now my daughter just tells them what to do!).

Does anyone else have this problem as it is really getting her down and the school have been so unhelpful (although they did give her a laptop to use and a person to carry her bags when she was in the body sling) and are reluctant for her to do anything physical at all. She was a promising ballet dancer before the collarbone thing started but no-one wants to see a bone shooting out of a leotard and thats no longer a career option until we can find out more about stabilising the collarbone.

Sorry such a long and muddled post but i've got so many questions about all 5 of my kids that have the condition that its hard to keep on track!

Any info or help would be fantastic,

Thanks, Debbie

[Sonia]

Garfield - take yourself off to casualty next time it's really bad.

I thought it would be a good idea to use the rowing machine at the gym when I pulled my right shoulder which seemed to affect my collarbone on that side - it seemed to pop out, rather painful.

The next day it was still painful, and being a Sunday the 'out of hours' gp consortium suggested I went to casualty. I went and they booked me into orthapeodics the following day, where I was told I had subluxed my collarbone and it should settle.

It did calm down but if I rotate my shoulder it still pops out, and it has made my right shoulder a more unstable joint(ended up dislocating it a several times since), but I have had some shoulder strengthing exercises from physio to try and help prevent this recurring to often.

The reason I say go to casualty when it's really bad is that you don't have to hang around for months nagging your gp or waiting to see a consultant. It was also reassuring to hear someone telling me what it was.

Take care

son xx

[Katt]

I had this surgery in Feb with fantastic results - they cleaned up under my acromium, repaired the tendon (which was shredded by the spur - he showed me the pics LOL) and then fused my acromioclavicular joint. It is a long recovery - they estimate 4 months. I am 7 months post surgery and still don't have full upper arm strength but improvement in the joint and my pain levels has been amazing. I have the hypermobile form of EDS.

As an aside the only problem I had in connection with my hypermobility was with my neck. This was a result of tilting my head back to intubate me. This took quite a few weeks of physio to put right. As a consequence I was offered a spinal anaesthesia for my latest surgery. I declined as spinals haven't worked well for me in the past (probably EDS related). But if you know spinals work for you this might be an option worth discussing for those with HMS / EDS neck issues facing surgery?

Kathie

[eilaroc]

and I am not sure what it is.

It hurts (oddly enough). It looks (and my physio agrees) as if it is in the wrong place compared to the other one, but nothing is bumpy.

I have been rubbing it in my sleep and given myself a bruise.

My fingers are tingly and I have a twitch in the eye on the same side, and I have random hot bits on my arm.

My doctor seems baffled and gave me amitryptiline.

Any thoughts?

[sarahh]

Hi hun

Mmm not sure haven't got any suggestions but wanted to reply to you. Sounds like it needs looking into more instead of being ignored maybe a refferal somewhere not sure what dept though. Maybe rheumatology. I really hope it settles down.

Sarah x

[eilaroc]

I have been sitting on the rheumatology referral list for some time! They want me to see the scoliosis specialist.

[sarahh]

Mmm typical NHS waiting lists we have to wait forever don't we. It about time they saw you. People say it doesn't look quite right but they aren't suggesting anything to help you. They need to look into it.

Sarah x

[Sandy L]

There are joints at each end of the collar bone. Try feeling each with the flats of your fingers, which are more sensitive to countour differences, and try pressing over each to see if they are tender. If the outboard joint (the acromioclavicular joint) is tender, try touching the opposite shoulder to see if that is painful and then press down firml on the end of the affected collar bone and repeat the shoulder touching. If pain increases, it suggests impingement--pressure between the joint and the underlying tendons. Impingement syndromes are the domain of orthopedists.

[Rosie]

Hiya

I just want to pick up on your mention of scoliosis. Scoliosis can cause most of what you are describing, and presumably if they want you to see the specialist, they think you have it? Depending on what part(s) of your spine are effected, and how severe it is, it can cause pain and displacement (my DD1 has a hump on her right upper back as well as uneven shoulders) which in turn can cause nerve entrapment etc. I would think it is worth going to see the scoliosis specialist, any idea of where they want to send you? Scoliosis can be associated with HMS/EDS111. DD1 used to have adolescent idiopathic scoliosis but as idiopathic means they don't know what causes it, it is now understood that her scoliosis is part of her EDS111. Stanmore has scoliosis specialists that understnd HMS/EDS1111 as well.



Rosie

[eilaroc]

There are joints at each end of the collar bone. Try feeling each with the flats of your fingers, which are more sensitive to countour differences, and try pressing over each to see if they are tender. If the outboard joint (the acromioclavicular joint) is tender, try touching the opposite shoulder to see if that is painful and then press down firml on the end of the affected collar bone and repeat the shoulder touching. If pain increases, it suggests impingement--pressure between the joint and the underlying tendons. Impingement syndromes are the domain of orthopedists.

On the inner side of my collarbone - ie the bits below my chin rather than the bits at my shoulder - the right hand side one is raised and tender. I have a physio appointment next week and will show her it.

[eilaroc]

Hiya

I just want to pick up on your mention of scoliosis. Scoliosis can cause most of what you are describing, and presumably if they want you to see the specialist, they think you have it? Depending on what part(s) of your spine are effected, and how severe it is, it can cause pain and displacement (my DD1 has a hump on her right upper back as well as uneven shoulders) which in turn can cause nerve entrapment etc. I would think it is worth going to see the scoliosis specialist, any idea of where they want to send you? Scoliosis can be associated with HMS/EDS111. DD1 used to have adolescent idiopathic scoliosis but as idiopathic means they don't know what causes it, it is now understood that her scoliosis is part of her EDS111. Stanmore has scoliosis specialists that understnd HMS/EDS1111 as well.



Rosie

Sorry - should have mentioned before that I have already been diagnosed with scoliosis, which appeared seemingly out of nowhere when I was 26. I have a 23 degree curvature in a reverse C shape in the middle right of my back - had my first spinal X-ray at 27, but I had been having physio for HMS for a good ten years before that and the scoliosis just was not there, since nobody could possibly have missed it.

The theory is that the collarbone movement (or whatever it has done now) may be involved with a movement in the curvature. I'd probably go to the John Radcliffe in Oxford since that is the nearest and also where I have been before.

[Sandy L]

Sounds then most like a sprain of the joint between the manubrium sterni (handle of the sternum) and the clavicle (collar bone). That si a guess; never rely on diagnostic impressions over the internet!!