collarbone vs. shoulder - advice?

[Trina]

Hi Libby,

I too have this problem. I spoke to my Chiropractor about it last Wednesday. He said that my collarbone was being affected indirectly by my shoulders that frequently dislocate. My ribs also tend to occassionally sublux. He couldn't confirm whether my collarbone is subluxing but it's definately related to EDS/HMS.

He gave me some ultra-sound treatment and did some gentle manipulation work. I've been fine ever since. I saw him again today and he did the same. I feel so much better in that area.

If I were you I would ask your GP for a referral for physio. It's not something you should leave in the hope it will correct itself. You wouldn't want to be in Hevsie's position.

Good luck.

Trina

[antimatter]

Hi, how can you tell if your collarbone is dislocated or subluxing? I am just a bit curious why the bits at the end of the bones (right under my throat) stick out at different angles (like one may be a little twisted). Could that be a perfectly normal variation in the shape of the bone, or is that likely to mean that something is out of place there?

...antimatter

[Kel]

Given that my GP examined my right shoulder and the area around it, and missed the right collarbone being dislocated, I think that variations in structure must be pretty subtle (this is the man who found a breast lump that I couldn't find, even when it was pointed out to me).

You might need a specialist who is looking for specific physiological changes.

[nonyanomemory]

Hi antimatter,

Outside of the diagnostic criteria for EDS UCHL said that my daughters collarbones were extremely hypermobile and this can be seen clearly although doesn't cause her pain, so much so that she checks if she is having her photo taken that they are not obviously 'out'. Don't know if that helps at all.

[libby]

thanks so much... i'm afraid of physiotherapy because i've done it a few years ago and it ended up being very harmful. so i'm scared of letting anyone manipulate or move my joints ever since, but you're right, i need to take care of it. i'll try to think how i can do it without getting too scared of more damage. maybe i can ask for physio and the physiotherapist can show me what to do and i'll do it on my own... is that possible?

Antimatter - i guess that if it dislocates you need to return it back to place because the joint remains stuck out of place, whereas if it subluxes it returns on its own. i sublux my collar bone often (ouch, ouch), it nearly always snaps back in on its own. but quite a lot of damage is done even if it's "just" subluxed and not dislocated. my collarbone seems to stick out a bit even when it's in place so it might be a personal thing.

[antimatter]

Thank you Kel, Nonya and Libby,

Kel, I think that the collarbone may be something to put on the list for the year-end rheumatologist visit (only about 7 months left now ). Nonya, you've got me thinking of looking for old photos now.

Libby, I hope the nerve pain eases off for you. Even if there are no nerves between the shoulder and collarbone, can't pinched nerves in various parts of the spine cause pain other parts of the body? From looking at one site (I haven't done much research to speak of), it looks like pinched nerves in the cervical region of the spine can cause pain and weakness in the shoulder, arm and/or hand. Is it possible that your shoulder/collarbone problems cause you to hold yourself in such a way as to pinch a nerve in your neck?

Now after noticing something interesting when looking that up, I am going to go do some research (such as it may be) on the vertebra C8 to see if it could really have anything to do with my little finger problems...and if it all comes down to posture after all...

...antimatter

[Girl from Mars]

Hi All. I was just scanning the boards because i have had the exact same problem. I have had shoulder instability for a while now and have horrible pains in my shoulder and nerve pain down my arm. I am learning to cope with this with the help of my physio. However recently i have been having pains in my chest.This pain feels like it is around the collar bone and the ribs. I also get quite bad swellings that feel quite hard.

I asked my physio about this and luckily it had swelled up that day so she could see it. She said that the left side of my chest and shoulder was rotated more forward then the right or something (slightly confusing).She said that my collarbone and ribs were more prominant and that there is nothing they can really do about it.

It is very frustrating for me because i have had this shoulder problem for a while now and this on top of it is just another set back.Anyway they said they are gonna keep an eye on it and see what happens. I am worried that by this point i may have a dislocated rib or something. Fingers crossed this won't happen but nothing suprises me anymore.Got to see them in 6 weeks so i will see what they say then. Hope you guys get some answers and if so feel free to share the info.Until then i will keep putting ice on it and taking a multitude of painkillers.x

[Janene]

I've had pain in my acromioclavicular joints for the past 4 years. The is the joint made up of the acromiom and the clavicle on top of the shoulder. I now have a spur pressing on the underlying tendon and my rheumy said I need surgery. When I saw the orthopaedic surgeon he said I needed the end of the clavicle (collarbone) removed. They cut off about 1.5cm from the end and also the spur. The orthopod dismissed my concerns regarding surgery and HMS saying that "lots of people are hypermobile". I'm concerned about healing and I'm also concerned that the area will be made even more unstable. I'm at my wits end as the spur is pressing on the tendon and the joint is very painful. I've also developed a frozen shoulder because of all this.

Has anyone else ever had the same sort of problem? There are lots of posts about dislocating shoulders and surgery but I can't find anything about collarbone surgery. I wonder if anyone else has had the operation or knows of anyone who has. I think the surgery is called resection arthroplasty. I'd appreciate anyone who's had it letting me know how they went. I can't decide whether to have the surgery or not and it's scheduled for the 21st of August. I feel like I can't go on much longer the way it is but I'm deathly afraid of making it worse.

Thanks,
Janene

[Kayzee]

I haven't had this done but I'm really worried your surgeon doesn't have a clue about HMS Maybe you should rephrase it and tell him you have Ehlers-Danlos Hypermobility, formally Type 3.

Hopefully this will make him sit up and listen!! I would not consider an operation with someone that doesn't understand the problems this may cause

Kay x

[Shadowlady]

Whether you'll have problems with recovering from the op, is more down to your individual healing - do you have any healing issues? What are your scars like?

The bone spur sounds very painful, and could potentially damage the tendon that it's rubbing against - I mean - I'm no expert, and don't know that for sure - but that seems logical?

I reckon that Kayzee is spot on there with the EDS thing - I'm sure there are some papers about surgery for folks with EDS - I think it comes down to using more stitches and leaving them in for longer - as it's a rather simple precaution - perhaps if your surgeon read about it, he'd be happy to stick a few extra stitches in?

Anybody got a link handy to a paper on surgery & healing for EDS folk?

Hope it all goes really well, best wishes,
S

[cocol]

My twopence:

This explains the acromial spur

surgery (coplaning)

resection and decompression

These explain EDS and surgery implications from anaesthetics, etc. Sorry, didn't read the abstracts, it's a bit late.

one on anaesthetics
this is about the knee but nonetheless...
EDS type IV and Marfans, but worth a read for the surgeon
another one on anaesthetics
orthopaedic manifestations of EDS
operating on EDS patients (no abstract)


Hope you get the treatment you need, and I agree with the rest, you should better say you have EDS type III or 'classical EDS' (I work with lots of orthopaedic surgeons who have to be taught -by me- what HMS/EDS is!!!!)

[Janene]

Thankyou for all your helpful suggestions and info. I don't really think I have any healing issues but then I've never had a major wound or operation before to go by - just the normal cuts and scratches that seem to heal normally.

The problem I have is that I don't get to talk to the surgeon again until the day of the op. I saw him once for about 20 minutes and he didn't even look at my MRI which concerned me too - just read the report. I've considered mailing him some information but then who knows if he'll bother to read it. My concern if I leave it is that as Shadowgirl says I may end up damaging the tendon the spur is digging into. The report says there is evidence of intrasubstance tear/tendinosis already. I've read varying reports on the success rate for this op from 80-95% but that's talking about normal people with normal collagen.

Common sense tells me the spur isn't going to magically disappear but I'm just so afraid of ending up with a worse problem. Anyway, I see my Rheumy on Monday so I'll raise all these concerns with him and see what he has to say. Gosh it's hard educating specialists isn't it? And we're the ones that pay in the end - it's so frustrating and frightening.

I'll let you know what the Rheumy says and whether or not I go ahead with it. Once again thank you all for your time and good wishes - it means alot to know that people understand and care.
Janene

[paw]

Best of luck to you if you have the surgery. It concerns me that you don't get a chance to speak with the surgeon and have your questions answered before the day of surgery. I had major shoulder surgery and the first doctor did not want to look at the MRI, did not think there was a big problem, and did not want to talk to me. I had a lot of questions (of course!) and he was out of the room before they were answered.

I did some research and found a better surgeon. This one looked at the MRI and really talked to me. I had never even heard of EDS / HMS at that time and I think I would have had a better recovery and outcome if I knew more then. I had 4 separate procedures done during my repair -- it was very damaged. I healed well but the rehabilitation was too aggressive and I tore again after surgery.

Maybe you should set up an appointment for an extra consultation to get your questions answered. If you have a bad feeling about how your surgeon is planning to handle your case, consider a second opinion or a different surgeon. The damage won't go away on its own, so you want the best possible surgeon working with you. I am not really pro surgery, but I know there are times when it is the best option.

[Janene]

Thankyou for your thoughts and experiences Paw. I'm 41 and at the stage of the game when things are really going downhill. It's scary isn't it? I know I should see if I can talk to the surgeon again but it's only 2 weeks until the scheduled op and I know they won't fit me in. My husband has organised to have a couple of months off work to care for me and that was no mean feat. I don't how he will manage to change things around again if I were to delay the op. These all sound like minor excuses I know when it comes to the future of my shoulder but it's been so hard to organize life around this date. You know how complicated life can get sometimes.

I'm definitely going to talk to my Rheumy tomorrow and even ask if he will ring my surgeon and explain my fears and concerns. I'll feel a lot better if I know that he understands the condition and my Rheumy is quite understanding so I think he might do that for me. In the meantime I have mailed some info to my surgeon in the hopes that he will read it and learn from it. I think I have to have this surgery - I can't see any way around it really. I will just have to assert myself when it comes time to start the Physio and not do anything I'm uncomfortable with.

Once again, thanks for your support and experiences - it's helped to talk to others who've gone through it.
Janene

[tireesix]

With my ankle surgery they had planned on stitching but were really worried because of my scarring so they used loads of butterfly stitches instead (I mean, they were really piled on, I was so surprised when the dressing came off a) because no one told me till that point that I didn't have stitches and b) because when the nurse took them off it was like a proper wad of the d**n things). That seemed to work really well.