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syousef
06-06-2007, 12:28 PM
Hi,

I have a very difficult problem, or rather my fiancee does.

She's in her early 30s. The initial injury occurred over 12 years ago. Please forgive the sketchy details as I was not with her at the time. (I have know her for about 4 years). She had a posterior dislocation but was told the shoulder was not dislocated and that the "swelling" (actually her shoulder blade protruding) would go down. As a result the shoulder stayed dislocated for some months.

She continued to experience dislocations. Roughly 180 documented hospital visits (not a typo) of them actually recorded over a 10 year period despite 3 shoulder reconstructions. Many more times she's had a friend relocate it or done it herself. I've personally only relocated the arm once at her insistence, and it wasn't at a hospital. She had a fourth reconstruction a couple of years ago and until yesterday the only dislocation since had been due to her physio pushing her too hard early on after that 4th reconstruction.

Then yesterday, again she had a dislocation and we fell into the same pattern. She's a school teacher and dislocated her shoulder tripping over a running child and trying to avoid landing on the kid. There were witnesses to this and it wasn't planned (in case any of you think with so many dislocations she may have done it on purpose - you wouldn't be the first). She didn't deserve the treatment she got for it.

The pattern is:

1) She's taken to hospital and asks them to reduce the shoulder.

2) Initially the doctors insist on doing the reduction in a way that she tells them will not work. It doesn't.

3) The doctor's boss is called in. She goes off to X-Ray or gets a CT scan to check for a fracture. (Sometimes the X-ray is called for before any attempt is made, so steps 2 and 3 are sometimes swapped)

4) A specialist (such as an ortho registrar) decides that the shoulder isn't dislocated based on the scans, despite her shoulder blade protruding about 10 centimeters behind, and her inability to move the arm. Posterior dislocations are notoriously difficult to diagnose via X-Ray - there's plenty of literature that says so.

5) If she's lucky the doctors see sense and do as she asks and the shoulder pops back in. If she's not she lucky they refuse to do it her way and goes under general to have it put in under x-ray OR reduces the shoulder herself against advice OR proceeds to a different emergency department where they do treat her correctly.

6) If she reduces the shoulder herself the doctors realize she was right but are usually hostile because she's done something against advice. To be blunt many doctors are absolute children when their ego's bruised.

I do not wish to mention specific doctors or hospitals. The ER report was a farce and a ramble that simultaneously say it was dislocated and that it wasn't. Don't get me wrong. Doctors can also be fantastic - The surgeon who did the last reconstruction was very good, and it's a testament to his work that it stayed in for a couple of years after massive damage.

Yesterday she had to reduce the shoulder herself against advice. I wince at the amount of damage potentially being done by having the arm out, and when this was happening frequently I would wince at the number of x-rays she was having (despite being assured by friends and doctors that the risk to her was small compared to the benefit of picking up on a fracture)

Here is my problem. I suspect that the surgery hasn't been sucessful, that dislocations are going to to continue to recur, and that at best it will happen with reduced frequency. How on earth am I suppose to make the doctors who are suppose to be experts in the field recognise that the shoulder needs reducing? I'm a big bloke and if I am at all forceful (verbally) I'm going to go on record as being a difficult other half which will do both of us no good. As I have no medical training I'm completely disregarded as is my fiancee's experience having the shoulder reduced.

Current thoughts are:

1) Getting a letter from her last surgeon explaining that the dislocations are difficult to see.

2) Getting hold of medical literature that describes the difficulty of diagnosing a posterior dislocation by x-ray or CT, then getting her to keep a copy on her person or on record at various hospitals

I've repeatedly used the word 'dislocation'. Now I'm willing to accept that there is another technical term for what is happening but the facts are that the shoulder blade protrudes, the arm cannot be moved, and reduction does "relocate" the shoulder. I strongly suspect it's a true dislocation and just a case of being such a rare form of dislocation and that the doctors aren't trained to recognize or deal with it. I've found abstracts on the internet that suggest this is the case.

The trouble is that no matter what you present, the specialist available to the ER's word is going to be taken as gospel. Does anyone have any ideas on how to deal with this? Sitting back and watching doctors treat her with suspicion, refuse treatment, and having her shoulder out for longer than necessary possibly causing further damage is wearing thin.

Thanks for reading. I know it's long.

angieliu
06-06-2007, 02:29 PM
I am no expert with this but I can understand where you are coming from with the frustrating nature of shoulder injuries.

My advice would be to first, consult a sports physician who can give you advice on what to do to prevent further dislocations. Sometimes surgery is necessary to re-stabilise the shoulder. I would also ask the sports physician to recommend a sports physiotherapist who only works with shoulders. I think it is important to find out the underlying cause of the reason why your fiancee's shoulder continues to dislocate.

There have been studies which I have read which have said that those who have continual dislocations, surgery is recommended to restabilise the shoulder followed by exercise rehab to strengthen the shoulder girdle.

Where abouts are you based? I know a really good sports physician in Sydney who is very thorough and I'm sure KJ can point you in the direction of some sports physicians in Melbourne.

syousef
06-06-2007, 05:52 PM
Thanks for the reply angieliu.

My fiancee's already had 4 re-constructions to stabilze the shoulder. The doctor that did the surgery indicated the last one would be her last chance, as there is a progressive decrease of roughly 10% in the success rate for each surgery and there would be no point in doing the same thing again and again with the rate down to less than 60%. I suspect one day she'll go to have the shoulder popped back in and it just won't. I think if it gets to the point where the joint just doesn't hold, she'll have to do something and I'd be trying to get her to consider surgery that would retain mobility in the arm before having the shoulder fused, which seems to be the next step.

We're Sydney based though she could travel if there was reason. The name of that Sydney physician would be most appreciated. Whether we use it or not will depend on how the shoulder behaves itself in the next few weeks/months. We're getting married on Sept 1st and going on honeymoon in NZ so we both sure do hope it will.

The immediate problem though is getting her treated properly at the ER when this happens so she doesn't have to shove the arm back in its socket rambo-style.

I dug up some information I hope we'll be presenting to the ortho clinic at the hospital that she's been referred to by the ER. This condition is rare but who knows maybe it'll be of benefit to others. The first link succinctly shows why the ER misdiagnoses.

http://www.gentili.net/fracture.asp?ID=161
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=10750929&dopt=Abstract
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=9697644&dopt=Abstract
http://www.orthop.washington.edu/uw/treatmentof/tabID__3376/ItemID__263/PageID__585/Articles/Default.aspx

If the dislocation recurs any time soon I think I'm going to try to email the doctors who wrote the articles. That's how desperate I am.

angieliu
06-06-2007, 09:58 PM
Hi there,

I'll send you the sports physician's number in a private message. He works in North sydney and also out in Olympic park. As for shoulder surgeons, I have heard that Mark Perko, Jerome Goldberg and Des Bokor are very good.

I think that it is important to go and see someone soon before it anything else happens. I have also read that some people naturally have are very soft and flexible which means the are more susceptible to dislocation. So I would get into see the sports physicians as soon as you can to try to get to the bottom of it.

Will send details to you now. I think what is also a very good thing after seeing so many sports physicians is to have a list of questions you want answered, things like what are the options now to stop the shoulder from dislocating. Can I ask has your fiancee done any physio rehab work? I have been working with a physio for the last 6 months to strengthen the shoulder muscles because I have an unstable right shoulder and a possible tear in the capsule. Physio has helped a great deal for me.

syousef
07-06-2007, 06:48 AM
Yes she's done plenty of physio, and asked all the questions. Thanks for the info. I'm sure it'll come in handy. Sorry but gotta keep this short. Gotta run.

kjwilkin
07-06-2007, 08:24 PM
Hi there,

I can appreciate how frustrating shoulder instability can be. I've had both shoulders operated on now. I had my right shoulder operation about a month ago.

My shoulder surgeon, Greg Hoy specialises in shoulder instability. He is based in Melbourne but would be definitely worth seeing for an opinion. Let me know if you want his contact details.

I had an open capsular shift and my rotator interval was also closed. Apparently with really loose patients the rotator interval has to be closed. So far the results are excellent. People who regularly dislocate their shoulders may have a predisposition to this due to the slanting of their shoulder bones. I fall into that category and know that there is another operation to fix this. For me I don't think I'll need to go down that path.

As well as physio I've found clinical pilates to be very helpful. I do it a couple of times a week and makes my shoulder feel a lot better and get more function out of it.

Good luck !!

onearmedbandit
13-06-2007, 07:30 AM
Hi there

I know how your fiance feels. I too have major problems with posterior instability in my shoulder. I am about to proceed with a third operation in the hope to stabalise it (fourth shoulder op in total as have had right shoulder also operated on). I've got a really really good team of 5 Shoulder Surgeons who are all extremely well known both here in Australia and in the US.

I have dislocations so frequently that I've lost count of how many times I've been to hospital now. The most recent trip was by far the worst because despite myself knowing how best to proceed with my shoulder, I was assessed by an arrogant inexperienced intern who seemed to think that I had simply 'strained' my shoulder (funny - you'd think when a shoulder is sticking way out the back that they would identify this as dislocated?).

Given my experiences, I've managed to form some really good relationships with my Specialists and each time that I dislocate - I call the ER, speak to the Orthopedic Registrar on duty who then puts me through to one of my shoulder specialists. This works a treat (except when its a public holiday). As soon as I arrive at hospital my ortho surgeon is there and knows exactly how to handle the situation. Perhaps you could get your fiancee's specialist to come to a similar arrangement.

All the best!

Levi
02-08-2007, 05:43 PM
Oh,the poor girl.She seems to be going down a familiar path to myself.End result..no can fix....cause lax joint.I am off to see a rehab and pain specialist 2morrow so I will let you know if he has any fresh ideas on these damned shoulders of ours.I do understand that many Docs fail to recognize posterior dislocations and that is very hard to correct at a later date.