weak thighs causing pain in knees after 6 weeks of arthrofibrosis

[missmyknee]

Hi Kaddydee

Sad to have another join the ranks of AF.  Kaddy make sure you read all the links provided in this thread. It sounds like from your description, that you have arthrofibrosis (AF for short). The most important thing you read, thru all of these threads, is to seek out one of the names off the AF list of doctors. I am guessing you are from the UK, so finding an AF specialist is difficult. There are fewer names and not much patient feedback. There were 2 posters who did see 2 doctors and had success in treating their AF.

One poster was called Dynamite. She used Dr Glynn Evans at the London Knee Clinic, London Bride Hospital

http://www.londonkneeclinic.com/article.asp?article=5

Another poster named Stasha, who used Dr Rahul Patel at Wellington Hospital, London

http://www.rahulpatel.net/

There are other names on that list , in the discussion thread about finding a Dr In the UK.

You are talking about the possibility of another MUA. If you are more than 2-3 weeks post op, according to the literature, you should have a scope first, to remove the scar tissue, then a gentle MUA after.

As talked about in this thread, patella baja is diagnosed by lateral view xrays of both knees, so the bad knee's patella height is compared to the good knee's patella height. Measurements are taken off those xrays. Your patella definitely is scarred down with little movement in all directions. Timing is key before scar tissue continues to get worse and more fibrosis to where it will pull the patella down  and deeper in the joint. Early recognition and treatment are key to getting a successful recovery from AF.

Make sure you thoroughly read Dr Noyes 12 part course on AF

http://www.kneeguru.co.uk/KNEEnotes/node/633

Pam

[Kaddydee]

Thanks Pam for your thoughts and time!
I have read through Dr Noyes course a number of times and I agree that I don't think a MUA will be appropriate.  My OS said he wouldn't do a MUA after 3 months but I think he is scared of more arthroscopic surgery because I react so badly to them - he thinks I have RSD!  With pain, spasms and extreme sensitivity I'm also scared of having more surgery but then I'm more scared of living like this forever.....
I live in Australia - even tougher to find a AF specialist?!?!?!?
Anyway, I'll see this OS tomorrow and make him talk - I have a list of questions and a physio sitting in with me!  If I'm not happy then I'll have to look around.

Have a good day,

Kaddydee

[missmyknee]

Hi Kaddydee

There is an arthrofibrosis specialist in Australia. His name is Dr Mervyn Cross

http://www.kneeclinic.com.au/merv-cross.htm

Here is a thread from a poster named, patellamess, who had great success using him.

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=48755.0

Pam

[Kaddydee]

You're a star Pam!  Thanks
Patellapain's story has been great to read and gives me a lot of hope -as long as I don't have RSD! Good on Patellapain for working so hard - he really is an athlete! 

K

[Kaddydee]

Hi!  Me again....
I'm just back from seeing the OS.  I have mixed emotions about the morning.  Firstly, my surgeon wasn't around so I saw someone else (the joys of the public system!). This OS worked with my OS when I was in hospital so at least he knows some of my story but he couldn't give me any definate answers today as he has to consult with the other OS first.  AAARgh!
What he did have to say......He said my knee is very stiff and will need something done.  Both he and the other surgeon are scared of doing arthroscopic  surgery again because I react so badly.  He wants to try an MUA and have me stay in hospital 3/4 nights to help with my pain levels and get the physio started properly.  He said that the manipulation will hurt alot afterwards because the knee is so stiff! I'm glad he is honest. 
What I'm dissappointed about is that next week is 3months from the last surgery and my original surgeon was adamant that I have a manipulation before the 3 month mark.  The problem is that I will see the original surgeon again in 2 weeks and then have the MUA done a week/two after that.  So, that means that I will have an MUA on a very stiff knee after the 3 month mark.  Not so good!
I guess I'm lucky that I have two OS's looking after my case and hopefully that means I get the best outcome for my knee.  However, I walked away from today's meeting feeling very unsure.  Now I'm playing the waiting game again to see what my original surgeon decides.

That's all from me, for now,
Kaddydee

[prech]

Just to chime in on having symptomatic scar tissue without loss of ROM -- both my knees developed extensive scarring.  One was diminished by >25 of flexion and was extremely hot and angry for months before I found a Steadman fellow who identified the scar tissue.  We did another 3 tesla (higher resolution) MRI and it showed sheets and nodules of scarring everywhere.  I was completely surprised that 2 days post-op, my months of suffering had just been about eliminated.  That was a year of wasted!

With that knee resolved, I'm working on getting the other knee scoped (AIR) -- full ROM 135 flex and -10 extension, but very evident medial fat pad scarring.  The Steadman trained all use the Hoffas test, so that was the quickest clinical route towards diagnosing my scar tissue pathology

[mum2xl]

Hi all. I've not logged on for a while I afraid.  I began to feel quite overwhelmed with dealing with the arthrofibrosis since staring this thread and it was all I could do to live for my weekly PT appointments since I last posted - may be around Sept 2012.  This is my update since then.

Just as a reminder, I'm in UK and when I started posting on here, I'd had a routine debridement of my left patella under arthroscopy back in June 2012 to try to correct an intermittent minor pain I'd had for the last 20 years.  I was a fit and healthy person prior to the operation.  I immediately experienced complete quad inhibition (my knee was giving way rapidly and I could not flex my quad to move patella), redness, warmth and stingy sensation across knee, constant swollen feeling inside knee, flexed knee gate, failure to progress with bending - by week 5&1/2 post op I had only achieved 90 degress with hard stop, despite continually doing my exercises.  I had told my OS and PT that there was a problem and continually pointed out prominent symptoms to them,  but was simply told I was a slow healer.  The original PT that I had for 9 weeks post op, was making me worse. I ending up tearing tissue and deteriorating - getting weaker and weaker and my pain was increasing.

Around week 5&1/2 post op my whole leg had seized up.  It felt like it was being shrink wrapped from within and felt dreadful.  I could do little more than drag it about.    My OS then decided to listen to me and thought I may have a problem with 'excess scar tissue' as he put it, got me to take strong pain killers/anti infammatories and told me to force my knee to bend. Over next 3 days I got a lot of flexation back but it still didn't feel right. I was in a lot of pain. He continued to tell me nothing was wrong and told me to join a gym.  Completely by chance, I'd found out about AF on here. So I printed out Dr Noyes tutorial and put it to him that I had AF.  He told me it only happened in TKR and I'd been reading too much.  My husband and I thought he showed complete stubborness with his attitude.  I knew from my research that time was of the essence if treatment for AF was to be a success.  With this in mind I felt completely abandoned by my OS and was under tremondous pressure. I pushed for referall to another OS called Mr Harvey in the Wirrall near Liverpool, that I found with experience of AF listed on his profile.  When I showed Mr Harvey's profile with AF experience on it, to my first OS he said 'Well I suppose you might have a bit of it'.  I was so cross.

I had another MRI in the Wirral which confirmed my patella had been pulled down and across by the scar tissue.  I have recently seen a copy of the letter Mr Harvey send to my GP. His technical language reads that there was a 'definite tilting of the patella within trochlea and that the lateral retinaculum appears to be tight as does the ilia tibial band'.  He said that there is some 'slightly alterred signal within the proximal half of the patella tendon'. 

Does anyone know what all this this means???

The MRI didn't show up any remaining scar tissue but I knew from reading blogs on here, that it hides and doesn't always show up. Mr  Harvey referred me to a PT experienced in treating AF in the Wirral near Liverpool.

I had deteriorated to such a level by that point that I could hardly walk.  I was in so much pain in both knees by then, that for months I ended up being confined to my couch for most of the day which obviously made the quad atrophy even more severe.  During this period I put 2 and a half stones on due to the incapacitation and my general health spiralled downwards in many ways.  It was one thing on top of another.  I ended up in hospital a few times in the ER room due to the other health issues.  My legs shook uncontrollably if I tried to walk and I was in immense pain in both knees due to the severe quad atrophy.  I live quite a distance from the PT Wirral and I wasn't well enough to drive.  I had to catch 4 trains and get a cab to reach her clinic.

My new PT has told me that my knee was absolutely full of AF scar tissue when she first started treating me.  It had even spread to above my knee cap under my quad.  We discussed other options should the PT not work (laterall release).  We commenced on weekly doubled up sessions of painful PT.  It was agony but I did not mind.  As well as breaking down all the scar tissue, she had to stretch out all the shrunken tissue in the knee.  She pulled back my patella into place and taped it.  She had to continually stretch out my shrunken quads.  Karen is confident that all the AF scar tissue has now gone.  This similar treatment continued for the next 4 weeks until she was confident that the patella was staying put.  We then commenced very basic strengthening PT - like sitting on a pilates ball and raising my knee up.  My 'good' leg recovered from the quad atrophy really quickly.

Around mid November time I think, I walked my children to school for the first time in months and this was a big achievement.  I have continued to improve strengthwise every since.  I am still having PT and have been having hydrotherapy for a few weeks too.  My PT has said that she really does not know where I would be now had I not gone to the lengths I had to educate myself about AF and push for correct treatement.  I can do everything now that I used to do (albeit tentatively sometimes due to weakness still) and have full flexation.  I am just about to start using a gym to improve strength further. I am not back to doing my beloved pre op exercising yet however.  I have really worked hard with the rehab exercises and my PT says that my recovery has been an inspiration.  I know for sure I would not be where I am now if it weren't for the invaluable help and advice of the other posters on here.


I tried to return to work just before Xmas but it was all a bit too much.  I hadn't really given any thought to how the whole process had damaged my head as well as my knee.  I had got so burnt out during the last few months and really had to fight hard to regain my health in many ways.  I just knew I wasn't feeling 'right' and ended up crying for hours on several occasions - I just couldn't seem to pull myself together.  All the feelings of sheer terror and abandenment I felt came flooding back.  I am now seeing a counsellor and she has said that I am suffering from post traumatic stress due to the lack of medical support I received and what I had to deal with on my own.  I am struggling a little to get back to where I should be in my head.  I think this is mainly due to the fact that I have never really seen an AF expert.  Although she has known how to get rid of the scar tissue, realign my knee, improve strength etc, my PT had to read up on AF in order to talk to me about some of the things I was asking her about.  Also my 2nd OS, Mr Harvey only saw someone who had developed AF 13 years ago.  So he is not an expert in the same field as for example as the wonderful Dr Noyes.  Plus I have only seen Mr Harvey once.  I will be seeing him again at some point in the future however, probably towards the end of my PT.

So with this in mind I have arranged to see another OS in Birmingham called Mr El Shazley.  Who has dealt with AF a lot more regularly than Mr Harvey.  He has really gone out of his way to answer a lot of questions via email  to me on several occasions.  He has told me that it sounds very much like it sounds like I had a bleed immediately post op, which started off the AF process.  I am just in the process of compiling all my questions that I would like him to answer.  I feel very lucky that the rehab my PT used seemed to work and I didn't have to have the lateral release.  Hopefully when I see Mr El Shazley, he can give me some reassurance with some of the symptoms I still have hanging around and I can start to heal my head too. 

My symptoms now are:-
 
1) weakness still in left knee - my knee still rolls forward if I happen to walk incorrectly.  I have really had to train myself in the last few weeks to emulate with my left leg what I am doing with the right (good) leg when I am walking.  If I forget to concentrate on my technique and end up walking incorrectly (I guess putting pressure on all the wrong bits) my knee still rolls forward.  I haven't seen my PT for 2 and half weeks so I am hoping she can see an improvement.   She felt my patella tendon still needed strengthening but personally I feel it may be down to quad insufficiency still - what does everyone else think?

2) Patella instability - when I'm in water in the swimming pool and I lift my knee up, my the force of the water driving down on the patella kind of makes it feel like its being left behind and not keeping up with the rest of my knee.  I asked the hydro physio in the pool why this was happening and she said she didn't know!  Frustrating!!

3) When bending and straightening out my leg I can feel quite a pronounced clunk on the left hand side of my patella.  There is no pain and it happens right at the end of the extension.  It happens more when I have had a period of innactivity - for instance when I have been resting in bed and stretch out it happens.  If I do it a few times it stops.  The same thing happens when standing up and I tense my quad to move my patella up - the clunk stops after 2 or 3 times.  It does do it every time though when I extend my leg out straight from the knee in mid air - I am thinking/hoping this is due to my quad requiring a lot more strength training yet and the patella is just maltracking a little as it goes into position?

4) When I first started kneeling down again, I felt a constant sharp stabbing pain  in my left knee (like a needle) in the left hand side of my fat pad (where one of the incision points was for the arthroscopy).  The more I persevered with this,  the less it happened. However I still very occasionally feel it when kneeling and felt it recently when my PT was stretching my knee out again.  I asked her what it was and she said that it probably just needed stretching out more.  However, I have been reading on this blog from other posters,  that there are such a thing as neuromas?  They sound very much like the feeling I have.  Does this mean there is still some scar tissue wrapped around a nerve ending in the fat pad?

5) I am still having to use a fantastic pain relieving gel 3 times a day for arthritus called FX Silica (think it's known as Artosillium in the US).  The first OS told me he found grade 2 arthritus during the op.  I find I can't manage without the gel or I get a burning pain in my knees.  Either the strain to both knees have made the arthritus worse or I hope it will improve as I lose the considerable amount of weight I have put on.

Pam (missmyknee) if you are reading this please could you explain something - you mentioned to another poster that these neuromas can spread.  I didn't really understand.  Would you mind explaining this again please?  If the pain I am feeling due to this stabbing sensation is very intermittent now and not really bothering me as much, would you think it fair to say that it would be best to leave it alone?  Or will it get worse?  Also even though the AF scar tissue is now thought to be gone, could it sparadicly return at some point in the future of it's own accord without warning?  I seem to get this impression from other posters?

If anyone can give me any advice re 1) the techical language my 2nd OS used in his letter or 2) the last few symptoms I have hanging around plus 3) how does a bleed start immediately post op - is it the surgeons fault? I would be extremely grateful.  Thanks again.

[The KNEEguru]

.... a 'definite tilting of the patella within trochlea and that the lateral retinaculum appears to be tight as does the ilia tibial band'.  He said that there is some 'slightly alterred signal within the proximal half of the patella tendon'. 

Does anyone know what all this this means???

This means that the patella is seen to be tilting to one side within the groove of the underlying femur bone, in which it should normally be situated without a tilt. The local soft tissue 'stay' on the outer side of the patella (the lateral retinaculum) seems to be tight, and the other important soft tissue stay (the ilio-tibial band which runs down the outer thigh and links to the lateral retinaculum) also seems to be tight. The inference is that these two stays, both being tight, are tending to pull the patella into an abnormal tilted position. The note about the 'altered signal' infers that something untoward is happening in the upper part of the patellar tendon just under the patella - something I would imagine such as inflammation.

[The KNEEguru]

May I ask a question, mum2xl? At what stage in your rehab did you first hear from your clinical team about patellar mobilisations?

[mum2xl]

Hi there. Thanks for the info. I take it it could may well have been scarr tissue around the patella too then?

In answer to your question, the first medical person to mention or do patella mobs was Mr Harvey. Then the 2nd pt did them regularly after that.

Thanks.

[Lana1]

Hi mum2xl
Did you have lateral x rays of your patella previously?
Thanks.
Lana

[mum2xl]

Hi Lana, I didn't have an x ray, I had an MRI before the op. Mr Harvey my 2nd OS, told me and showed me on screen that showed an ever so slight tilt on the patella. After the AF it was even worse. I'm wondering therefore if the intermittent pain I felt was down to the slight tilt. It was better the more I kept my weight under control. Perhaps then I never really needed the op in first place. Maybe just exercises and taping wouldve been sufficient.

Looks like my first OS didn't pick this up on MRI.

Thanks. Jennifer.

[The KNEEguru]

...how does a bleed start immediately post op - is it the surgeons fault?

Many surgeons use tourniquets around the top of the thigh to stop the blood flow in the leg during surgery. The tourniquet is similar to that used to take blood pressure. The leg is lifted up before surgery to drain the blood from the limb, and then the tourniquet is pumped up to occlude further blood flow into the leg. Then when the surgeon operates the view is not obscured by bleeding. At the end of the procedure, the tourniquet is deflated and the surgical area checked for bleeders, which can then be sealed by cauterising them.

Usually the bleeders are evident straight away, but occasionally the small vessels may open up later and bleed into the joint. This is called an haemarthrosis. The bleeding can continue until the pressure in the joint cavity is such that it equals blood pressure and stops the vessel bleeding further. This increased pressure in the joint is very painful, and the blood is also irritant and adds to the pain.

I do not really think that an haemarthrosis is necessarily the fault of the surgeon. The patient may have a low blood pressure at the end of the op from the anaesthetic agents and the bleeders may not make themselves evident when the tourniquet is deflated. When the patient starts to recover from the procedure, however,  the blood pressure may go up and the bleeding into the joint cavity may start.

Some surgeons advocate not using a tourniquet during arthroscopy so that they can see the bleeders misbehaving at the time of surgery and can cauterise them straight away. This may avoid the problem of haemarthrosis.

The management of post-op haemarthrosis will depend on the surgeon. Here is a short article by Dr Noyes about the problem - http://www.kneeguru.co.uk/KNEEsurgeon/noyes01/index.php?itemid=40

A big, tense haemarthrosis that goes undrained may lead to inflammation, adhesions and all the issues with stiffness with which you are familiar.

[mum2xl]

Hi

Thanks for that. I've just read the link. Dr Noyes explanation on that does seem to make sense with how my knee felt when I first got out of bed. It felt like it was full of jelly. It was really hard to control and I felt like bambi. It kept giving way rapidly. I had no control over it.

Jennifer