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Author Topic: First post, advice needed  (Read 817 times)

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Offline Rhiggins86

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First post, advice needed
« on: June 02, 2012, 12:45:58 PM »
Hi all, this is my first time on here, but after having some trouble I could do with some other opinions on the issues I've been having. I'll start with a history of my knee.
11 years ago when I was 15, I had my first dislocation of my left knee. After months of physio and multiple dislocations, it was decided when I was just turned 16 that they would operate. I had an Emslie Trillat procedure, to move the anchor point for the tendon connecting to the lower knee from the outside of my leg (where it had naturally been through bone forming when growing) to the correct place below the knee and this op results in a permanent screw in place to hold this. This knee, apart from weak, was now fine. I did and still do have the usual pains when walking for long, or in weather pressure changes etc.

Now onto the problem knee! When I was 18, my right knee had a severe dislocation, and upon a surgeon checking it, discovered the bone had formed the same as my left knee, making it also prone to dislocation. This was corrected with an identical operation to my right knee. My right leg has always been strongest, and recovered quicker than the left, but I have had a few dislocations again after this op over the years. Also have the usual problems with pain and stiffness. Early last summer my legs were in the best muscular shape they had been in since my athletic youth before any ops, but I suffered a sever dislocation of my right knee. Followed up by physio, having little effect, they decided another surgical procedure was needed.

13 weeks ago I had a stabilisation of the knee, taking a tendon from my calf and wrapping it round the kneecap, securing it to inside of my leg with a screw with a rather producing screw head (had my worries over that checked and it's fine). The NHS sent me to a private hospital for the procedure after forgetting to put me on the waiting list. I had an allergic reaction post op to the medicine they had given me (even though I had thoroughly informed them of this) and resulted in being discharged from hospital with a single bottle of Calpol to help with pain relief (really not making this up). This was enough for one days dose, and as soon as I was out I was straight onto the phone to my GP to get suitable pain relief. It took 4 days for my GP to sort this out and gave me Tramadol which I know I am fine with allergy wise. Because of the time without pain killer, when I went to the physio 3 days after my op, I was in so much pain she didn't want to do anything to my leg. I had an appt scheduled for a few days later, and when I was there the pain was just as bad and she refused to do anything to me until proper pain relief was working. 2 weeks after my op I tried contacting the physio dept again and was never ever given a call back after chasing up more than a few times.

By now I was left with Arthrofibrosis in my right leg, and was unable to bend it more than a a few degrees. Only 5 days ago, I underwent a manipulation of the knee, where they knocked me out briefly and bent my knee through the scar tissue to create a passage for my knee to be able to bend. Since then I have been bending my leg as much as possible, but can only bend my leg to an angle (measured from the back of the calf to the back of thigh) of 120degrees. This is the maximum I can manage, and when at that angle my knee is in a lot of pain, agonising pain. The knee itself is constantly sore as expected because it is the first time I have had movement with the tendon surgically put in place.

Apart from being in constant pain and not being able to sleep, the advice I am after is for a couple of things.
First is about the knee itself, how worried should I be that cannot bend my knee even to a right angle? Has anyone else experienced this following a knee manipulation? I know they said I had full movement when I was under, but even when the pain killers have kicked in fully it still feels like I physically cannot bend my knee any further. Also what should I expect their next moves to be in regards to my knee?
The second thing I need advice on is the fact that while in hospital after the manipulation, I was told kit was of high importance to start physio to keep the knee bending, and physio should contact me within two days to get an appt around 3 days after my op. They did contact me, but the first appt they have offered will be 10 days after my manipulation... Is this too long a period? Should they have questions to answer about arranging it so long after the manipulation after me being told it should be within a few days at most by the surgeon himself?

Please excuse the massive first post, but I am just in a bad place at the moment in regards to my knee, with fears of not being able to drive for a while (have read somewhere you should be able to bend your leg to at least 110degrees) or not being able to cycle (the only sporting activity I have been able to do and enjoy since I was a very active youth).

Many thanks in advance for any replies
Ross

Offline kneepaincure

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Re: First post, advice needed
« Reply #1 on: June 03, 2012, 08:07:22 AM »
Hi Rhiggins86,

In a hurry, just looking in, but you definitely need to have a top specialist in AF look at your knee. Some posters from the UK could probably help you out with that. Please read the articles by Dr. Frank Noyes about AF under knee notes which talks about how important it is to catch it quickly and stop the progression. 10 days is too late IMO. There used to be a poster on this board called HeatherM who has posted in a lot of detail about AF. You could probably find some useful information from her posts. Never give up hope of getting back to normal life. You just need to find the right person to help you out. Let us know how it goes!! :)
Have had tilted kneecaps for many years, and occasional patellar tendinitis.

Offline Rhiggins86

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Re: First post, advice needed
« Reply #2 on: June 03, 2012, 03:01:34 PM »
Thanks for the advice  :) will be on the phone to the surgeon first thing tomorrow as well as the physiotherapy dept to try and get them to get me an appointment sooner, I have done this in the past successfully but just needed someone else's opinion that 10 days was too long a wait.

I will have a read up on the things you have mentioned as I know very little about AF other than its a mighty pain in the bum.

Thanks

Ross

Offline lululocket

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Re: First post, advice needed
« Reply #3 on: June 03, 2012, 10:39:26 PM »
Hi Ross,

I'm so sorry to hear this is happening. I'm similar to you in that I've had TTT variants to prevent dislocations, although luckily not had AF. My most recent surgery was 12.5 weeks ago so pretty close really.

Just wanted to give you a few positives to focus on:
You know loads about the procedures that have been done - this is huge, don't underestimate it. Your understanding up to this point will keep you on a great course for learning about AF next.
You're clearly willing to fight for the right treatment by chasing physios etc. You're aware there is an issue and so you can take action! Even with the NHS being frustrating!

Those two things together make me really optimistic that you WILL BEAT what your knee is throwing at you. I don't know enough about AF to offer any constructive advice, but there is information buried somewhere in this site, and I believe you will find it and get through this. Don't waste time worrying about the angle you can bend to and things - just take that piece of information it as one piece in the jigsaw puzzle and use it in working out an action plan.

Best of luck,
Lulu
2003 RK dislocation
multiple sublaxations (10+), both knees
2007 LK dislocation
03/2010 TTT on RK
03/2012 TTT on LK

Offline Rhiggins86

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Re: First post, advice needed
« Reply #4 on: June 04, 2012, 08:21:14 AM »
Hi Lulu,

Thank you for your supportive reply  :) I am still to sit down more and read up on AF in more detail but I am beginning to get my head around this more. I have this morning contacted the GP and tried the surgeons secretary, but unfortunately due to the bank holiday double bonanza have been asked to call back on Wednesday, and seeing as I already have a PT appt scheduled for Thursday, then there is not much point in kicking up a fuss over how long it took for an appt until I see the surgeon next week for a checkup and he can do this on my behalf (for then2nd time in 3 months). The NHS sure can frustrate you!

I will take your advice however and keep my chin up :) and after seeing my car sitting bored in the sun yesterday had to sit in her (it has to be a female car) and play with the pedals whilst making car noises (I am still a big kid!). Things like this will keep me motivated to sorting my knee, and at least I've had enough physio sessions over the year that I fully understand all the exercises to try from home myself so have been cracking on with these from the second I got home from my manipulation of the knee.

Thanks again

Ross















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