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Author Topic: Still dislocating after 8 surgeries- don't know what to do- please help!  (Read 372 times)

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Offline MiahMelon97

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Hi all,

I've been suffering from knee dislocations for seven years following an accident and have undergone eight surgeries to try and correct this, with the majority being open major reconstructive surgeries.

My last surgery was the fourth open MPFL reconstruction in May of '17. This surgery was done using a synthetic graft and was the last ditch attempt at correcting the problem. Despite intensive physiotherapy, my knee was dislocating again in a matter of weeks after surgery. Previously I have undergone three other MPFL reconstructions using different types of grafts, a Tibial Tubercle Osteotomy, Micro- fracture and also several arthroscopic debridement surgeries as well as hardware removal.

I am at the stage now where I don't know where to go, or what to do. I have sought many different opinions and the general way to go seems to be either to undergo a High Tibial Osteotomy to try and straighten my leg with the hope this would improve the dislocations or of course to do nothing. The worry that the surgeons have with the surgery option is that it would make the situation worse. I've been told that it can be very hard to control the rotation of the femur without using an external frame, so when the surgery is being used for instability and the alignment has to be exactly right, it may not be the best way to go. I've also been told that they are almost certain that they would fracture my patella by removing the screws from the area and also that non union would be a big worry as I have hardware in the area of the femur where they would be placing the bone graft. Both causing more new problems. Out of the four surgeons I have sought opinions from, only one has actually been willing to do it due to the risks.

So the other option is to do nothing and live with it. However, the dislocations are getting more and more frequent and as this is happening the pain is also getting worse. I am in pain with it all the time and it is getting to the stage where it is unbearable. Being only 20, I would love to be able to do the most simplest of things such as walk or climb the stairs. My knee is always very swollen and very hot which makes even wearing trousers very uncomfortable. Working is very difficult as it causes me a lot of restrictions and the dislocations also mean frequent falls- only last week I fell and broke my wrist. All of this has a knock on affect to my mental health and I just feel at an all time low at the moment because it seems that wherever I turn, theres no help.

So in looking for a way forward I re-visited one of my previous surgeons and he starting discussing the possibility of an above the knee amputation. He has said that he will put my in contact with a prosthetics clinic and I can meet people in similar situations that have made the same choice. I have obviously also done research and can only see good results from people that have chosen amputation- I know that as with any surgery there are risks involved, and of course there is also more specific risks like phantom limb pain etc. I need to find a way to move forward, however I'm unsure whether this is too drastic. Although I guess he wouldn't have suggested it if it wasn't something he thought may help.

I'm feeling very confused as to what is the best course of action. They are all very respectable and trusted surgeons but its hard to know which way to turn.

Any help is greatly appreciated- or even if you would just like to share your story, please do! Thanks for taking the time to read my post.

Thanks, M. 

Offline Brandon123

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I'm sorry to hear that you have gone through so much struggle with your knee over the years. My immediate reaction after reading your story is that above the knee amputation must be the absolute last resort. Isn't there anything else that can be done? Besides that and HTO? And even if there isn't, maybe you should consult even more surgeons regarding the HTO? I don't know if your surgeons are patellofemoral experts, if not, you could seek advice from such knee surgeons that are experts on dislocations. Even though your surgeons are respectable and trusted, maybe there might still be even better ones out there. And by better I mean, surgeons who have even more expertise regarding your particular problem. This is of course my layman reaction, but it feels like it is worth trying anything before amputation.
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline Vickster

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  • Neelie knee!
There are some names of recognised PF specialists around the world here

http://www.kneeguru.co.uk/KNEEnotes/primers/whos-who-knee-surgery/whos-who-patellofemoral-surgery

And osteotomy

http://www.kneeguru.co.uk/KNEEnotes/primers/whos-who-knee-surgery/whos-who-osteotomy-knee-pain-angular-realignment

Has a joint replacement been considered? As above amputation seems extreme given the pain syndromes, phantom limb and other complications which can occur
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
More tears and wear, scope planned in Jan 2019 to tidy up

Offline MiahMelon97

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Hi Brandon123 & Vickster,

Thank you to you both for taking the time to reply.

There isn't any other options that I'm aware of- and if there is, they certainly aren't on the table. It is agreed that a knee replacement won't solve the problems- plus I'm too young, which is quite laughable when we are talking through much worse irreversible options.

The surgeons I have seen are patellofemoral experts and three of them are listed on the lists that Vickster very kindly posted up. I've done a lot of research on where to go and who to go to, in a hope to find the best answers.

Thanks once again for the responses.

Thanks, M.

Offline kcknee

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Even though your problem started after an accident, have you been tested for hypermobility disorders or Ehlers Danlos Syndrome? It might explain why your knee keeps dislocating despite multiple surgeries.

I looked into amputation several years ago for different knee/leg/foot problems, and decided against it. Insurance would only pay for equivalent of shaped wood block prosthetic and not the electronic prosthetics that allow an almost normal life.
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline lilone

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Before you go through something so extreme and irreversible, you need to be fully informed and armed with details. Why won't knee replacement fix the problem? Because of the angle of the femur?  Find out why, exactly, it isn't on the table. Being too young should not be a factor here since the issue with age is longevity of the replacement and the need for re-do's.  In this case, if you needed a re-do in 20 years and then got 20 years out of it and they were unable to do a second replacement on it, the end result could be amputation by the time you are in your 60's.  But for you, amputation in your 60's would mean 40 additional years with a leg.  There may be something specific to your case that means TKR won't be viable but it is important that you understand it so you can make fully informed decisions.. Amputation comes with such intense physical and psychological consequences...especially in one so young.  Know without a fraction of a doubt that there are no other choices before you consider it.  Don't underestimate the mental component of amputation. I know someone dealing with it now.  Use it as a very last resort.
« Last Edit: May 20, 2018, 08:39:12 pm by lilone »

Offline reflex_nl

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wow... quite a story. I had several dislocations as well and up to 3 surgeries. I can feel you pain and despair... all "solutions" are tough choices to make.

I visits 13 different OS'es, and spoke to many patients before deciding on the next move... I gladly recommend you to do the same. It is no fun, but it may help to get new insights.
RK Patella Luxation in 2000
RK Scope grade 2 damage to patella
RK PT for 4 mths, recovered 90% after 4 years
LK Patella Luxation in Oct'16
LK Scope to remove loose bodies (grade 4) to patella Nov'16
LK Lateral Release + MPFL Reefing + MCIC in the UK Dec'17