By Charlie on Monday, October 06, 2003 - 11:06 am:

I have recently been diagnosed with HMS and my doctor has discovered that my kneecaps are not in line with the tendon/ligament that is meant to run from the thigh bone to the shin bone, across the front of the kneecap. This has been the contributing factor of a few dislocations and very often my kneecap (the right one, that keeps dislocating) just pops out of it's socket and back in again.
My doctor has suggested surgery to realign this ligament (putting screws in my shinbone) and to prevent dislocation but has also warned me that it increases the risk of Osteoarthritis and that the effectiveness of surgery is decreased dramatically in those with HMS.
Does anyone know of any research done about this, statistics showing the risk of osteoarthritis and the level of effectiveness the operation has on those with and without HMS? Any links or information or thoughts on the matter would be much appreciated
Many thanks
Charlie

By Gyll on Wednesday, October 08, 2003 - 02:10 am:

Hi Charlie, I had Knee surgery at age 30 to stop my knees from dislocating. I already had wear and tear arthritis from the frequent,almost daily dislocations which would happen at any time. for example rolling over in bed, walking down the road ecetera. As I had two young children I had no choice as I could not continue with the dislocations which needed a visit to A&E to re-align them each time.
The surgery I had was called a "Goldthwaite Section" and although there were a few problems, has resulted in NO full dislocations in over twenty years. I do have subluxes and the knee could fully dislocate but years of knowing what I can and cant do has helped, also exercises to keep the muscles surrounding the knee strong has helped. However I have OA in both knees and they are painfull. So Charlie, All in all I feel The surgery was worth it for me. You will need to find out as much as possible, about What procedures would be possible and the outcomes. I hope this helps, I have also met people who have had very poor outcomes from surgery.Only you can make an informed decision about what is best for you.All the best Gyll

By Michelle Cheam on Wednesday, October 08, 2003 - 10:22 am:

I have had shoulder surgery and elbow surgery. I am 28 and have degenerative disk desiease(a crippling form or artritis in the back and neck) oestio arthritis in my kness and starting in my shoulder, and plus I have burcitis in my hips. All at 28 already. I work on a form to help support those with arthritis now though. I am one of the gurus for them and I help new people facing this problem all the time now.

Talking about arthitis with EDS is tricky. From what I have seen we almost all will eventually have one form or anouther no matter what we do. EDS is causing our joints to injure and move in unnatural ways. This is why our stats for this are so dang high. Injuries encourage and help arthitis. The more often your injuries the higher your chance.

Our best fight against Osteio Athritis is to be able to keep moving. This takes strengthing and movement on an everyday bases. Streaching for most of us isnt needed and can cause more harm than good. (Ask a therapist or doctor about this.) Everytime you are hurt and can't move something it makes it worse. The more times you hurt something the injuries can have a building effect on the damage to the joint.

We also face a double wammy with surgery on joint because that can and does increase the risk. I simply weight it out like this.

From what I have felt is surgery is about equal to four bad injuries (actually one of my old ones due to the joint being unable to even hold together anymore) due to the time before you are back and going. How often are you hurt and how long does it take to heal? Is there a brace you can use instead to slow injuries if not stop or prevent them, such as an open patela brace for the knee? Would you be ok wearing one for long periods of time when you need too? Or does one surgery to stop most of this sound better?

I have never re-dislocated after surgery. I still get sore and am starting to get arthritis in on sight, but it is better than dislocating just while I was sleeping which had been happening for 8 years. Some of them refused to stay in anymore because my joint was almost shot. The comfort I have in trusting my own body (well a part)for a change has made a huge difference in my life and how I have been able to live it since.

Just weight everything out hon. Stats wont show you what to do. Weight out the options for yourself. Get a second opinion if you feel the need. Then choose what makes you feel might improve your life for the best. Just remember you can try and keep arthritis at bay with lots of low to no impact excersises, but the injuries and even the surgery will cause some damage, but which do you feel will cause less in the long run?

I choose surgery because I feel like I regained a part of my body and I can sleep again. I started being afraid to sleep becuase of so many times waking up in the middle of the night in pain and trying to relocate the joint again and again. For me it was the right choice, but only you can choose the right plan for you. I hope I can help some. If you want to talk more email me at vampile_d@yahoo.com anytime.

Sincerly,
Michelle