Joint hypermobility disorders :

Knee problems and Hyper Mobility Syndrome - - Posted by emma_louise (emma_louise), 17 October 2003

Hey everybody

I am new to this board and just wondered if anyone could give me any help.

I have recently been diagnosed with Hyper Mobility Syndrome and as a result of this (though I didn't know it at the time) have dislocated my knees about 100 or more times throughout my life.

After a violent dislocation in the summer I have been left with massive pain everywhere in my knee joint. I have just had an MRI scan and hopefully will soon find out the root problem.

My pain has been increasing for the four months since my dislocation and my doctor has told me that although surgery is normally an option (to re-align my maltracked kneecap and fix any torn tendons/ligaments) the effect is massively decreased in those with HMS.
There is also a massively increased risk of osteoarthritis because of the condition so I was hoping to speak to anyone with any experience or thoughts on the matter.

Any comments would be much appreciated

Thanks for reading



Posted by Iona_-Uk (Iona), 17 October 2003

Hi Emma
Welcome to the board.

I am also extremley hypermibile and there are quite a few people here who suffer the same.

I've been told that surgery doesn't always have the desired effect on people with HMS because there isn't always enough strength and tension in the joints to make a better recovery, because things are so slack.

It's a very hard call to make, I've personally always opted for surgery, when it hasn't worked, I have been dosappointed but without another solution to my problems, it's very hard to contemplate carrying on without at least trying the surgery.

Hopefully your MRI will tell you what is wrong with the knee and I hope your consultant can give you an optimistic solution.

Iona
Posted by Shazinoz (Shazinoz), 25 October 2003

Hi Emma,
I was originally diagnosed with HMS (in 2001 at age 30) but am now told I have H-EDS (in early 2002 at age 31) (the Hypermobility form (Old Type 3) of Ehlers Danlos Syndrome (a Genetic Connective Tissue Disorder)) and have FULL body problems with subluxations, dislocations, injury and PAIN.
It is VERY common to repeatedly dislocate a joint ESPECIALLY if it has been previously injured (I.e. Once you have done it ONCE, it is MUCH easier to have it happen again and again and again).
HMS and EDS (some think that HMS and H-EDS are the same thing and others think they are NOT) are thought to be caused by a genetic defect (that hasn't been found yet) that makes our collagen (the stuff that makes up our ligaments, skin and MANY other part of our body) weak and more stretchy, and as our collagen that makes up our connective tissues is NOT "normal" we do not tend to heal like those with "normal" collagen.
Do you use any kind of Functional Knee bracing to help protect and support your injured knee (something like a Breg PTO brace (I think that is what it is called (A number of the other HMS'ers here use this brace with good results)), bracing is VERY important in those of use with "defective" collagen as once we have injured our joints/ ligaments then we usually have a weakness in that spot for the rest of our lives, we also tend to injure ourselves in little ways everyday without knowing it simply BECAUSE our joints do hyperextend (go to far), this is called "micro trauma", and we have to be careful as sometimes if we have injured say our knee and are in a brace or cast we can in fact put too much stress on the other joints like our hips and ankles and the have MORE problems because of that, we also tend to put a lot more strain on say the other leg as we are unable sue to the injury and pain to walk properly and this stresses our other leg, our backs and so on, it is a Vicious cycle and something you have to be aware of.
I can understand why your doctor is reluctant (you are NOT the only one in this situation) to do surgery as they usually leave surgery as a last resort as we do NOT heal normally and we do not recover normally and we are MUCH more likely to undo(tear out, stretch etc) the surgery or make it worse or to have it not help at all.
(take me for instance in 1993 I tore my ACL clean out of my femur but also shredded it, so that it was USELESS, so in 1994 I had the ligament reconstructed using my patella tendon (the middle 3rd of it) [Also Understand that I was diagnosed in 2001, so we DIDN'T Know I had EDS], then in 1998 after SO much trouble, pain and instability (right from the day after my surgery), my new OS decided it needed to be reconstructed again(using hamstring tendon this time) as I had stretched the graft so much it was again USELESS, then in 2001 while drying myself after a bath (I bend my knee us so I could dry my foot), my knee EXPLODED and with that shotgun sound my ACL again snapped and I am left now with NO ACL a very unstable and painful knee and NO OS who will fix it again as my last 2 reconstructions have only lasted a MAXIMUM 4 yrs each, and if ti WAS done again they would ONLY be using more parts of ME (which is Defective anyway) and it is NOT likely to last more than 4 yrs and then I am back where I am now, but with a stuffed good knee (as this time they would have to harvest the graft out of my good knee), extra pain and discomfort from the surgery and a HUGE bill for the surgery, hospital, PT and bracing etc (I tend to have complications after my surgery and both times so far for my knee have been in hospital about 8 days)).
We are more likely to get OA simply due to the EXTRA wear and tear our joints get as our joints go through there extended range of motion and we continue with the above microtrauma, there is Not much we can do about it but to TRY to keep our joints within a "normal" range of motion, brace and PT our injured joints, keep our pain under control and try to live with each new injury as it comes.
Down the track you may have no choice but to have surgery and Hope that you recover well and that everything goes well, but for now I do not think your OS thinks that is a good option for you.
If you wish to talk to me more about this or anything you can email me
Nice to meet you and good luck and I am sorry that you have joined the Odd Bod family (as this is a club that NO ONE wishes to be a member of)
SORRY this is SO LONG...
Hope this helps
Sharon  

Here are a couple of GREAT web sites on Hypermobility Syndrome that might help you understand a bit more about your disorder: http://www.ptjournal.org/June99/public/ad069900591p.pdf
http://www.ptjournal.org/PTJournal/April2000/v80n4p386.cfm
http://www.hypermobility.org/ (WONDERFUL UK SITE)

This old Forum was so valuable that we have kept it as an archive. It is just for reference. If you want to ask questions or offer advice, there is also a current Bulletin Board which you can access from our home page.

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