Hi guys,
Last week I finally had my diagnosis of EDS 3 confirmed after the initial diagnosis 8 years ago. I have already had 3 knee surgeries to correct severe patella maltracking but 3 months ago i displaced my patella and tore my medial ligament getting up from a chair. The geneticist/rheumatologist Prof. Wordsworth said last week that I shouldn't let the surgeon talk me into more operations as my knees are in a pretty bad state from the previous ones which started when i was 15. He said not to agree to anything else unless they can give me really good odds of success. So now i am seeing the orthopaedic knee specialist tomorrow and i just don't know what to do. i have a 1 year old son and so the recovery from another surgery would be awful but i am in a huge amount of pain from this latest displacement and know that there are no non-surgical options. i am only 27 and have grade 3 osteo arthritis in both knees.

does anyone else have a huge conflict between their rheumatologist and orthopaedics?

I'm an orthopedic nurse with EDS. Most surgeries will not be successful unles they know how to reconstruct the tendons and ligaments, and not with your own tendons and ligaments because the connective tissue in them are deffective and will just stretch out again on their own. And when you talk to the surgeon you need to say it just like that. "I know from research that orthopedic surgeries on people with EDS generally fail because the tendons and ligaments are deffective and the overstretching will re-occur."

I read a post about someone having a surgery reconstruction done to their shoulder where the doctor used ligaments and tissues transplanted and had far better success with that. It would be something worth researching if you are serious about having surgery for this problem. Otherwise your best option is PT to strengthen the muscles around the knee to replace the support that the ligaments and tendons don't give it.

Most ortho's are interested in surgical fixes. That's their job, to cut or ignore... I have found that physiatrists, rheumy's and geneticists tend to understand the disorder more and what works and doesn't work. I would trust the rheumy unless you can get a definite success rate because your knee and tissues can only take so much "repair" before they break down worse than what they start...

Hope it helped a little!

Ps- A knee replacement or hip replacement are also unsuccesful in most EDS patients because they use the same tendons/ ligaments that are deffective and it still stretches out and will not hold the replacement in correctly. (so says the research I've done from others experiences)

thanks - I saw the surgeon today and from the MRI you can see that my patella is displaced by about 1cm and so he said that non-surgical options are not appropriate at all. He is going to do a medial ligament reconstruction and thankfully my hamstrings are substantial and stable enough to use that for the graft. He said that they will have an alternative source during the surgery incase my hamstring isn't suitable. i was prepared to go in and resist surgery with all of my might but even i could see from the MRI that i didn't have a choice otherwise my knee is going to become increasingly damaged and i would begin to have issues with more of my ligaments. he is a lovely guy (the most friendly ortho i have dealt with) and was very knowledgeable - he is retiring next year and has been a specialist knee surgeon for 35+ years!
I am in the UK and so the wait for the surgery is about 2 months and so i've got time to prepare myself and get my quads into the best shape possible.

thank you again - you have stimulated more questions to ask my doctor!

I had something called a Tibia Tubercule Transfer, it created enough relief to do PT and I now use custom bracing (Bledsoe 20.50) along with PT to help my knees. I would stay away from MPFL recon, it did crap foor me. However if you do choose to get it, I would ask for cadaver tendons with graft jackets.

It is also called the fulkerson procedure.

I've already had TTTs on both knees and so that's why they've had to go for the MPFL this time. The knee that i injured was realigned 12 years ago but it only took standing up from a chair to undo all of their hard work! i'm only 27 and this will be my 4th knee surgery.

I had failed shoulder surgeries to the point no one would operate on them and i did not want surgery but when one "fell" out and would not stay in my options were a fusion or nothing and suffer nerve damage. I found a surgeon who developed a way to use cadaver tendon and reconstruct the capsule and labrum...

surgeries on EDS patients are rarely successful when the grafts are from our own bodies because of the defective collagen.

good luck but i really think PT is a better way to go than more surgeries... as others have said, surgeons cut and that is all they know/do... PT and re-training your muscles may bring you more long-term relief.

I've already been down that route before my first surgery - they tried taping my patella into place again and physio to align my quads. They have categorically said that PT will not make any differencebecause my alignment is out by half an inch and i don't have a trochlea groove to keep it in place. thankfully the PT and surgeon (i saw them both together yesterday - the surgeon has a PT there to co-consult with) said my quads are in great shape so it will help my recovery.
I have always resisted surgery and done my research on this one - i have left a message with my surgeon to 'phone me back to discuss donor grafts rather than using my own

Note, though, that even if cadaver tissue is used, the new tendon/ligament will eventually be replaced with all of your own tissue. I had ACL reconstruction done with a cadaver Achilles in early March and it is already exhibiting EDS tendencies...as expected by my surgeon. Since I started with a grade III tear, we wanted to have the advantage of even a loose ACL to go with the physical therapy.

that's very interesting - i guess the graft just works as a scaffold for new tissue to attach to.
from having TTTs i know that the ligaments will stretch again but due to my level of OA i live a sedate life (as sedate as life can be with a toddler!) and have never been able to do any sport. i don't have huge expectations for this surgery, i know that i will be lucky if it prevents any further damage and will be thrilled if it has any impact upon my pain levels.

On surgeons and recommending surgery, about the only reason I even agreed to surgery was to prevent future damage and to be able to maintain my existing activity level. The primary doc I see for EDS issues is a sports med specialist and DO who did give me the option of non-surgical rehab. Having a non-surgeon's opinion to go get surgery went a long way with me and I do think it's useful to get that sort of second opinion.

All tissue is replaced over time...IIRC, my surgeon expects a full replacement of the cadaver tendon with my own cells within 6-12 months. In the interim, you do get the advantage of the strength of the cadaver tissue, plus not having to heal at the (now temporarily weakened) donor site. Avoiding donor site complications is one of the reasons my surgeon pretty much only does cadaver tissue reconstructions now, regardless of underlying conditions.

BTW, make sure they don't forget hamstring strength as well, when doing the knee rehab.