An athletes mpfl reconstruction diary

[lucha86]

So i had another collapse this time screwing up my left foot which is now cut and my ankle is swollen after going to visit a kitchen and knee giving out and metal scratching top of foot, ankle is a little swollen.....

So i tried to ring to see if they could give me an earlier fracture clinic appointment but there is none till my appointment....... so i have physio at the hospital Thursday so this is going to be interesting......

So i now some people who work for the care quality commission who mark or investigate the hospitals for care levels etc, they said this would be deem unacceptable and needs improving so they have advised me what to do, and i have followed their ideas...........but wish not to go into it and further what they said........and i have taken heed of their advice......and followed it i did not give them the surgeons name but seeked advice

so for me when i think to be left with such a knee, and my surgeon to say to carry on with physio considering post first surgery my knee was a full strength he said and still collapsing and semi dislocating, and now after this surgery i still have the same thing, i feel like a tested guinea pig as in once they have tested on you its like ah cant fix that one next person and toss you to the side and expect you to continue with a knee that is worse instability wise .......im sorry but its my quality of life, every surgeon can walk away after they have done their work but when you have had 80 collapses in 5-6 weeks they dont live with that....... they carry on with their horses or golf or yachting lol

I just want it fixed that is all, but the funniest part is how registrars seem to agree with me that my knee has a serious problem and the consultant needs to do something about it and a certain ligament is causing it to roll, with laxity suspected ACL OR PCL as no problems on the lateral side..... but the consultant says just back to physio.........

So the fracture clinic i have been put down as is not my surgeons one..as judging by the registrars face in a and e he wanted me to get help from another clinic lol just heard a muffled annoyed hmm, surgeons hmm, so lets see if this works..... to be honest right now i do feel let down by my surgeon that i have been left in a state of disrepair and now i will follow the advice from the investigators, and i have no clarity from my surgeon..............

i even told the people who i know in the care quality commission and a consultant i know that i cried down the phone to my surgeon and said my quality of life was bad and my knee was collapsing unpredictable and i was scared it might go again they asked me has he followed up by phone call or asked to see you i said no the word they gave me was.... unacceptable..... he should be following up in this situation.....

[Snowy]

so now he has put me back into the fracture clinic in just in under 2 weeks, to get it sorted because he said the collapses need to be sorted,he said how do i cope with those collapses?? he said they look uncomfortable and painful?? he told me to keep  wearing the brace he felt it was a case of to keep it stable right now rather than the issue of the quad because the knee is just randomly collapsing.......... he said the collapse he saw that he couldnt understand why someone hasnt sorted me sooner......

This sounds more encouraging - some solid advice on helping keep the knee stable and a doctor who's prepared to both acknowledge that this isn't an acceptable situation and take some action on it. I'll keep my fingers crossed that the fracture clinic comes up with some better options for you, both shorter term and longer term.

[Clarkey]

Hi Lucha,

Finally you are making progress finding someone that is willing to take action into finding out why your knee collapses so easily. It does take a while till you find someone that understands! Before I had my 1st exploratory scope my OS and his team all thought I was imagining the knee pain, the MRI results was all clear and visually my right knee looked fine.

Now looking likely that I will be having my 3rd surgery on my right knee! I just wish more professionals listened more careful to the patients and their concerns and symptoms. It frustrating when no one seems to take you seriously and then when they do you are surprised and stunned that someone understands that are happy to help you the best they can.

[email protected]

[lucha86]

Well today at physio finally broke down in tears, i didn't shout i just cried didn't make a noise explained everything to my physio to what had happened all the issues the a and e visit,
i said surely i should be able to lead a life of normality rather than my knee going in the middle of a road and my knee giving out on a date that is no quality of life it is unacceptable an its health and safety.....
and explained about the CT now being an MRI ... so he gave me a hug to try to calm me down and he checked my knee and took one look and said

your knee has lost a lot  the muscles have shut down you have swollen patella tendons due to the collapse and major swelling around the joint this is unacceptable i have to help you as i know your case i know you try so hard i agree with the doctor,  so he said he would ring this consultant im seeing in two weeks to explain the situation... i cant leave you like this i need to keep an eye on you, because i have not seen a knee react this badly and i can tell its collapsed because the muscles are terrible we must fix these collapses.......

he said for me to wear the brace and not take it off until i feel i have more control of the joint its a case of damage control without causing more damage to the joint...... he said to keep trying to keep the leg going with slow kinetics and stepmaster and bike as the other machines my knee collapses on.....

but then disaster hit at the end of the physio session he moved my knee i felt a blot sharp pain knee clunked out then my whole upper leg and knee cramped up it took him 10 minutes to stop the cramping by this point i was in tears and leg was shaking so upset,  just couldnt stop it the leg and i felt so
useless and tearful and then he made me laugh by trying to say a few jokes..........then he said your leg is not right is it ive never seen it this bad even testing it it is bad i burst into tears i felt all the gym and physio had done on it everyday was just nothing and he said I refuse to see it any worse than this....

But i remember saying during the cramping im 29 not 89 and i burst into tears i said a surgeon can walk away and lead a normal life i cant.......... so then he gave me some tissues he wants to see me weekly now until i see this consultant.... he said my knee is very sick and needs help he said i cant make my leg stronger untill the collapses are dealt with and i need clarity and answers.........
imy physio said he will speak with the consultant as he believes i need a specialist to look at my knee as im not getting any answers from my surgeon and im being left in a bad way i said to him i felt like i can no longer trust doctors anymore as i dont have any answers and have a terrible knee

He said for me dont worry i will get you hope back, there are good doctors out there we need to get this knee sorted he said that why he test it for hyper extending the left knee goes back but does hold position he said but the right just clunks and hits the table nothing is holding it and he said it doesnt want me to cause more damage to it...... which is not normal

he said it must get sorted otherwise bigger things could happen, he said if the surgeon wasnt going to give me answers then this consultant would lead me in the right direction to get those answers so just wait to see what happens.........he said its been too long now and i can tell your leg isnt right

then i saw a physio coming out who worked with me on the ward when i had my surgery and works with my surgeon and she saw me and i was in a brace and she said oh thats not good and she asked what happened i told her and she said did my surgeon know i replied yes and she said whats he doing i said you tell me i dont know  walked off in tears so just have to wait now

So now my physio is backing me up it makes me feels better my knee is agony right now since the massive cramp so let's hope there better things coming on the horizon

[lucha86]

So after yesterday I feel I only have faith in physios rather than doctors I feel I have list complete faith in doctors I seriously cannot understand or comprehend how a doctor would not check up on a patient that is having knee collapses still after two surgeries and just leaves them and thinks can't do anything........next one.     
I can't fault the physios they have been amazing and the a and e doctor and the medical secretary but I think my surgeon I don't know what to believe anymore because there is no clarity or no response or consideration for my quality of life my leg collapsed again today 4 times so far.   
But in a positive note hoping my physio can do something now that I have backup I know something isn't right
Why should I have to cry down a phone to a surgeon to fight for my quality of life which is deplorable if I don't hear anything from my surgeon in one week. ...   Then I will be writing a letter because I refuse to be left in a despicable deplorable condition even last night only had two hours sleep.  So I'm hoping by my physio speaking to the consultant then I can hope again in the medical profession because right now doctors I fail to comprehend how even under their medical oath they can leaves patient to have leg collapses and not even try to make the patient comfortable untill a diagnosis is found...   I can't even get out of my own city now because my knee is so unpredictable tried today knee gave way at station so now I hope mybphysio will call soon to let me know what is going to happen

[lucha86]

so this is what the physio has found out so far...

failed the external rotation recurvatum test for posterolateral knee instability..........
.as right knee flexed alot more back than my left..... it can be indicators this test for posterolateral instability acl issues and a sign of hyperextension which we already know i have lol

i have movement he believes where the joint is not being held in place..... my left knee is fine

my knee cap/ patella on my right side ( bad side) moves alot and doesnt hit off the bone like it should but my left is fine and hits the bone.......

my patella tendon is severely swollen due to the collapses.............

but what was interesting was posterolateral knee instability can cause collapses of the knee and unusual twisting motions of the femur against the tibia and twisting motions or cutting motions the knee does not like which is true for me so now im getting a few favours as im finding little information on it as i taught a lot of orthopaedics in mexico English they are now based around the world so i have called in favours for them to help get me information on this...........
but i have had one get back to me to ask for the mri im going to have to check the posterolateral corner on a high mri such as a 3T............so who blinkin knows but it would explain alot........

[lucha86]

So now ankle is going when knee is going really hoping the leg will hold  out for another few days up until I see my physio next my physio was suppose to call me to let me know what happened probably busy poor guy 

One thing I'm. Trying to understand is in the test I failed he said I had no end point on the external rotation point test what is an end point???

So currently lying in a bed with my sister making me cups of tea as the pain is annoying know I have had 6 collapses today currently got my knee in a brace on the bed and frankly strapped up just want to burst into tears as my leg just feels really tired and heavy with all the collapses but keep trying

Knee s swollen and buggered up just trying to keep going till I see my physio next now that my ankle is slightly buggered too I'm just rather frustrated

[Clarkey]

Hi Lucha,

It is like a domino when you line them all up in one row and then push the domino in the front and they all collapse in one full swoop! If your knee it not too happy then it will put more stain onto you ankle and hip and your good knee or knee that is not as bad!

I am sorry that you are now more and less bedridden at the moment that is never a nice feeling having to be asking for help and support as you then feel that you are being a pain and burden on the person caring for you even though they say they are more than happy to help out the best they can.

Is there a way you can see your OS as a priority as there is bound to be a cancellation or could pay privately and see a OS that been highly recommend by members on KG or your family and friends might be able to suggest which OS to be seeing.

I think I am near to where you live visiting my brother and his family in Staines-Upon-Thames this weekend that is very close to Heathrow Airport. One can certainly notice when the big jumbo jets fly over like the A380! I love be a good uncle to both my nephews 2 and a half and 7 months and can babysit ok just cant kneel or squat  and not as quick as I would like to be on my feet if they older one decides to run off!

I am lucky that I can see my OS on Wednesday. If you lived closer to the Midlands region I would highly recommend seeing him as he would make sure he do all he can to get your knee right again. Hi is really nice in person with a good professional friendly bedside manner. Some OS's can be full of themselves as they have such a highly paid job and massive responsibility that they treat you like a label rather than a human being with a robotic personality.

[email protected]

[lucha86]

So as physio told me to keep it moving in bike only as you can tell it went again due to redness around knee and it keeps hyperexrending back to much and moving forward way too much

[lucha86]

Hey snowy and Clarkey
Yes I do agree with you Clarkey but I think sometimes with some consultants it gets to a point where you have to show your knowledge or be straight with them I think alot think if we have problems they expect us to get on with it and not argue with them but for me I think over 100 collapses post 8-9 weeks after surgery and even before surgery too would make any patient question a doctors diagnosis because they are the ones that live with the consequences of their action and the ability to lead a quality of life is important  when there looks to show indecisiveness lack of honesty or clarity then other pathways must be sought ...

As doctors talk to each other if you want a unbiased opinion alot of doctors  have told me to go out the area I live to gain a opinion as all consultants know each other in an area and talk it's sad to say that but it's a fact........

If im to be honest I feel sometimes consultants are quick enough to give their own opinion but to listen to a patient or make a patient Comfortable generally falls onto the physios as the doctors never or generally don't ask these sort of questions if they listened more I think more diagnosis could be found quicker.......... Or patients would also be more comfortable too..... Without putting more pressure on the nhs

I remember even seeing one doctor in a and e who said to me the amount of problems he saw by surgeons and it's the a and e staff that have to deal with it because the surgeon doesn't know what to do or just isn't being helpful so they put the people back into the system to get them sorted... He said a surgeon is there to make sure their is no complications and if they are they must deal with them and not the a and e staff... So we could ask are surgeons asking the right questions or at least trying to make the patient comfortable untill a diagnosis is reached??
Thanks for your comments guys...

Hopefully snowy something will happen I agree at least someone has said there is an issue now I have also got a recording now of my knee collapsing in the gym I will show it to my physio this Thursday...... It's terrible how the leg goes in the video

[lucha86]

My story so far.......
Feb 2014- surgeon said needed surgery
May 2014 mpfl reconstruction
June 2015 - MUA due to leg stiffness and triple the size,
September 2014 - still having instability and collapses,
June 2015 - clean out medial plica excision
July 2015- registrar said consultant did not know what to do with knee.
September 2015- over 100 knee collapses and instability post surgery surgery
                                 Surgeon doesnt know what to do now MRI again!!
September 2015 Physio not happy with knee instability cramping,  neither a and e doctor
                               put back into the fracture clinic, with different consultant at end of month.
                               Physio now talking with consultant as he is not happy.....

Things which i know.........
Have small patella, hypermobility, failed (positive) test for  external rotation recurvatum test and had no end point
and knee hyperxtended and clunked when my left still managed to hold itself, TT-TG 20MM,
have videos of knee completely collapsing

so as you can tell its been a long rather frustrating journey lol, and not including my weight loss and retiring from my sport at the end on December 2016, it makes me wonder was it all worth it??

I have lost faith in doctors in the process, as i have felt like my surgeon has given me no clarity and just feel like he has given up and doesnt know what to do and its like i have been a guinea pig and its hasn't worked so next patient sort of thing which i shouldn't be lead to feel like that if he does contact me the first thing i will do is send the video to prove my knee is buggered because things cant be argued in black and white,
 i cannot fault my physio hes a true Liverpudlian lol very funny and sarcastic lol but he has given me so many answers, and a bit more clarity and he tries in best in making sure, i get the right treatment etc....... hes a senior physiotherapist within the NHS one of the top boys at the hospital, last time i had him he stayed with me when my leg and knee all cramped out and collapsed, and made sure i was ok, and even said enough is enough something must be done! poor sod spent 40-50 minutes with me and i was just crying very quietly he knew i was doing it as i didn't want to make other people think he was causing me pain lol lol but that is why i cannot fault him in his quality of care my physio
so when this happens your physio is saying something is wrong and he is a senior in his job and an a and e doctor of course you would as a patient begin to question your diagnosis especially after nearly two years, but also the trust and respect you have for the surgeon because surely if a patient you knew was having so many collapses you would follow up on them to check......
                               

[esm87]

Hi Lucha

So sorry to hear you are still having so many problems however as other people have said, it sounds slightly more promising now that your physio is helping you and you have your appointment at the fracture clinic.

I'm really hoping you manage to get a solution that can finally fix your knee!

Emma

[lucha86]

i hope so too emma i hope your doing well...
my knee went on the bike today so only sticking with stepmaster or sitting weights benches etc.....
hoping i will get some clarity.........

i think when you start have doctors and physio saying something is actually wrong you then start to feel something is more promising.......

but for sure i have lost faith in my surgeons and doctors alike just fed up with lack of answers and help... i shouldnt have to sit in an a and e when a surgeon has fixed something when it hasnt been fixed

[lucha86]

So I sent my surgeons secretary a letter to ask for a transfer to another hospital saying that my knee is unacceptable condition And I feel I have lost faith because myknee went again and im just tired to it so I hope I will get what I need because I'm in a state of disrepair

[lucha86]

Surgeons how can i describe them........

My roller coaster journey through MPFL reconstruction has taught me many things, some people on the wards told me the surgeons are treated like gods and not to be argued with....
I say this i was once told by a very wise teacher:-

"We all come into this world the same way, and we all go out the same way."

My wrestling teaching meant, no matter who you are you are an equal to be treated with the same amount of respect as you would anyone else........
Sometimes i feel the basic understanding of nature morals and principles can be forgotten and to listen do we as patients have to get frustrated to express our opinion as the surgeon has his own belief, we are the patients that live with the problem on a daily basis and must be listened to so that an understanding can be created before an opinion is formed.......
i think there are four key rules which sometimes are missed....

1) Honesty, 2) ability to listen 3 )hope 4) care

As a patient i require honesty from my surgeon, so then i know what to do and what to expect or if things got changed etc.....Surgeons and doctors can forget the basic principle sometimes the truth can filter out and the patient can find it in the wrong, way i suppose in a way doctors are less honesty now due to the liability factors......
With the a ability to listen, if you over speak over a patient, does that create trust and respect? It will only deem the patient to believe that they are not listening to them and the patient will just let the surgeon carry on. For me i feel now as patients we need to speak more, have the ability to open up to a doctor if the trust is there to say when something is not acceptable we are all not perfect we are all learning in life and sometimes we need someone to tell us where we are going right or wrong.....

Hope is a key for me i feel all patients need a sense of hope or a sense of the ability to lead just a sense of normality,  we are all human hope is what helps us in our natural instincts to keep us going through the trial and tribulations of life.............

Finally care...... If a patient has complications, or on going issues a doctor should check on them, if you leave a patient to get on with a condition that is deemed to be unacceptable it comes under quality of care and a patient needs to be checked on if thats by the surgeon talking to the physio or the physio talking to the doctor......

sometimes i do believe if these four key items co existed and worked with doctors and that physiotherapist worked with doctors on complicated cases more there would be less issues.....
Yes my surgeon was helpful until after the second surgery but then with the care aspect if all exams and ideologies have been exhausted and you can still see from videos my knee is collapsing... then why am i not transferred out to a specialist area,

I once got told by a doctor in London that if a consultant transfers a patient out after two surgeries it can black spot a surgeon what he said he meant by that was as doctors talk it can make them look bad.......but if this is or isnt true........ surely the most important thing is the quality of life for the patient and the care of that patient with complications rather than ones reputation as a surgeon??