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Author Topic: An athletes mpfl reconstruction diary  (Read 89266 times)

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Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #450 on: July 28, 2015, 08:36:19 PM »
knee after several give ways today

Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #451 on: July 28, 2015, 08:38:47 PM »
knee a few days after surgery as you can tell the difference between the previous one which was taken today and the other one the swelling is clear

Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #452 on: July 29, 2015, 07:49:17 PM »
so lets have like a round up so far.........
May 2014 - had MPFL RECONSTRUCTION
June 2014 - had MUA due to stiffness and leg being triple the size
September 2014- managed to return to wrestling but still had collapses, dislocations and inability to flex
                         a.k.a loss of flexion, knee felt mechanical not working with me.
December- 2014 by this point lost over 10 stone in weight, went back to surgeon to say knee was acting
                up and not right.........get banned from wrestling due to instability
Januray 2015- speak with two independent doctors in the wrestle who believe i have laxity, imbalance of
                      the joint or PATELLA ALTA, and that i also have very small kneecaps..........
June 2015- had an athroscopy and medial plica excicison
June 2015- knee still collapsing, and giving out, still unable to wrestle........
June 2015- seek doctors opinion, believing i might have nail patella syndrome due to small
                 kneecaps   or dysplasia and i must make sure all my quads are strong..............

suggested causes/ diagnosis
-PATELLA ALTA
- Attenuated patella alta
-DYSPLASIA
-SMALL PATELLA SYNDROME/ NAIL PATELLA SYNDROME
-HYPERMOBILTY.........

SO HOW AM I FEELING............ I JUST LAUGH NOW BECAUSE MY KNEE KEEPS COLLAPSING ALL MY FRIENDS AND FAMILY AND MY PHYSIOS HAVE SEEN IT COLLAPSE...... I HAVE HAD THIS SINE I WAS YOUNG.........it makes me laugh because i have had it for well over 25 years too, and doctors forget this sometimes i feel like saying hey you have the dislocations i have had for decades and then when a doctor blames a muscle you wouldnt be happy ..........argghhh!!!! my muscle get to great levels and they still dunno and scratch their heads as they see it go out of place.............
and the closet i have to a diagnosis is abnormally small kneecaps, TT-TG 20, a MPFL which is suppose to be stopping the dislocation, when people said the laxity, might be affecting it?? So then why did i even have an Mpfl RECONSTRUCTION???? ANNOYED..COM CONFUSED...COM FEDUP.COM!! dont expect a 100% perfect knee just something i can work with, and clairty............hissy fit over feel better lol
                                                               
« Last Edit: July 30, 2015, 04:16:28 PM by lucha86 »

Offline esm87

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Re: An athletes mpfl reconstruction diary
« Reply #453 on: July 30, 2015, 09:00:44 AM »
Hi Lucha

No wonder you're frustrated, you don't seem to be getting any answers or a solution on how to stablise your knee.

Has anyone ever looked into the potential hypermobility in your knee?
I have this and have just recently referred myself to a private physio clinic as I felt there was more I could be doing to help me get back to normal and to help the swelling etc. I also just needed guidance on how to help strengthen my legs as I felt I'd sort of lost my way with this as I was discharged from physio on the NHS in January.

Anyway, the new physio told me I have a Beighton Score of 9/9! Which is used to determine if you have Hypermobility. My knee dislocations are a result of this. When I was given the MPFL reconstruction on both knees I also had a Tibial Tubercle Osteotomy to help anchor my knee. My surgeon at the time told me there was no point in having one without the other, ie just the MPFL as that would only repair my damaged ligament and not fully solve my problems with my knee dislocations.

I'm not sure if any of this is relevant to you at all but maybe it is something to ask your physio/doctor to look into?

Emma

Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #454 on: July 30, 2015, 04:14:58 PM »
WOW EMMA HOW YOU DOING??????? long time no hear from you.......... hope your well =))

i also did as you did i got a private physiotherapist outside the NHS i still have her =) they spotted my abnormally small knee caps they said im an unusual case lol as my Beighton score was 5/9 so some joints are fine some are normal lol my elbows and thumbs came up as normal but my knee other fingers and flexion arms to toe came up as positive for hypermobility.........

So my independent doctor, told me to ask for x-rays of the whole leg and several different angles of the knee foot, hip and tibia, he said sometimes its better to get back to basics measure all the angles of your lower leg to make sure nothing has been missed so then a correct diagnosis can be made.........
maybe he is right to ask my surgeon for this because if i dont have a conclusive diagnosis then is it my right to ask for this considering i still have instability my knee collapsed another 3 times today..... was your surgeon aware you had hypermobility before the surgery emma?

So basically with my knee i have small abnormal kneecaps, laxity,a tt-tg score of 20 and still have dislocations/ semi dislocations post MPFL reconstruction, time to get my q angle size i think as this works in-line with the TT-TG score the doctor told me so then if that is abnormal then i might have something but just getting fed up with these dislocations

 
« Last Edit: July 30, 2015, 04:20:11 PM by lucha86 »

Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #455 on: July 31, 2015, 04:44:12 PM »
So my surgeon rang me on my mobile an generally if you have been in the NHS you know for your surgeon to ring you on your mobile something is up.........
so after the incident with my surgeons registrar where he said my surgeon didnt know what he wanted to do with my knee, and he was going to seek a second opinion, i did send a message to his secretary of my concerns and that i wanted a second opinion..........
well he admitted there still learning alot about mpfl and admitted im a guniea pig lol  ::) ::) ::) ::)
then he said my quads and vmo are  fine but i need to work on them still, in my head i felt like banging it on a wall, i said to him several times i have had this since i was a child and i still have the issue of instability, every time people blame the VMO and even when i get it right it still is showing instability
he talked about doing medial reefing,  and thought for now it would be best to work with the physio the physio said my muscules are looking good and i still have instability........... and my surgeon thinks it could be my hypermobility, seriously........... no one can give me an answer...... >:( >:( >:( >:(

What made me even more angry was so far this week had over 10 collapses fell down two flights of stair because knee went, and i feel its getting annoying now... so my independent doctor had asked me to ask my surgeon to get several different views of my knee via x-ray to check for trochlear dysplasia patella alta, and other things so i think that is my next best option............. let me go and bang my head on a wall and i might feel abit better lol


Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #456 on: August 01, 2015, 12:07:32 AM »
So  added to my smiley face scars I know have a bird or heart scar at the top of my leg the wrestlers are now calling it the hippie lol ......... Seriously lol

Offline Alpinist77

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Re: An athletes mpfl reconstruction diary
« Reply #457 on: August 01, 2015, 06:02:17 PM »
Lucha,

If you have a TT-TG distance of 20 combined with patella alta, this is a clear indication for a TTO.  The TT-TG angle can also be reduced through a trochleoplasty, because oftentimes, with trochlear dysplasia, the medial facet of the trochlea has overgrown onto the lateral facet, shifting the lowest point of the trochlea laterally.

Hyperlaxity of the ligamentous tissues surrounding the kneecap and allowing it to dislocate are often the result of abnormal anatomy.  If you have trochlear dysplasia of grade B or D, this is also a clear indication for a trochleoplasty.  In almost all patients with trochlear dysplasia (myself included), the patella is also shaped abnormally.  Please post radiograph or MRI photos, as we can probably see what the issues are (including nail patella).  An adequate specialist is able to address all of these issues; we live in the 21st century.

What country do you live in?  I am sure you can find someone on this board who has seen an adequate doctor.  Without addressing the anatomical inconsistencies, an MPFLr is like a bandaid on a gunshot wound.

I'm sorry to hear you're going through all of this crap, but I'm there with ya; it took me 8 years to figure this out...

Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #458 on: August 01, 2015, 08:20:28 PM »
  knee collapsed again leg swelled up like a balloon lol but trying to figure out big bump swelling below kneecap?! 

Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #459 on: August 02, 2015, 12:40:12 AM »
Do you know sometimes i might come across rather sarcastic in my humour or very blunt in the way im feeling,....but its the only way i can express myself.......

I feel that doctors told me to lose the weight so i lost 10 stone, and i still have instability, they told me to make my VMO stronger, surgeon was happy, and my knee was still unstable.......
so then i agree to a second surgery of mpfl revision, surgeon changes his mind and gives me a clean out and medial plica excision...... which again has not helped my leg and now suffering from give  ways, semi knee dislocations falling down stairs due to the collapses ....so im still doing physio back at the gym only doing exercises physio has told me to do and nothing else, so in a period of over a year and a half and over 15 YEARS of knee dislocations...... feeling abit frustrated.............

 i suppose all you want is some dignity or security in day to day life you dont expect a 100% knee as the knee has never been perfect, but not to have the embarrassment of your knee cracking out in the middle of a bar or in a shopping mall unable to move with people just staring down at you.......

I think sometimes doctors surgeons, they forget with people who have suffered instability for decades and they you mention the dreaded word "VMO" OR its your muscule, then you get thrown between the doctor and physios because the physios dont agree with the doctors, its gets rather pretty annoying.... i like to call it the "ping pong" sometimes just banging your head on the doctors table like woody the woodpecker would make you feel better lol

Sometimes i really do believe that in cases where there is childhood dislocations, there needs to be a different perspective rather than complaining about the same muscule group, i was called the clumsy one when i was a child because my leg kept giving out, i was the one that had to put my knee back in during netball and basketball matches at the age of 11,  forced into a cast for 8 weeks because my knee kept dislocating to be told, i was too tall and my knee and ligaments in my knee were not catching up with the speed of my height...... surley that tells you there is something underlying there im not doctor but im not a clown either lol

You see i think doctors also need to be honest with their patients, i dont think hiding things, can be of any benefit for the patient or themselves, if you give a patient clarity then you give a patient understanding, security, and faith.... if they dont this can lead to other situations where patients find out things in the wrong way, then you begin to question your faith in medicine as you begin to think when you have no answer or no clarity, you are quite literally in a grey area of medicine, you think.... whats the next step when the doctors doesnt know and you dont even know....................

sometimes i feel some basics are forgotten as everyone knows when you dislocate your knee/ kneecap it inhibits your muscles so then you build them up again then your knee goes again and its a never ending circle of dislocations and waking your muscles................ again .... and ...again.........im sure if half the orthopaedic doctors had this situation they would have a different view of patella instability, i have even asked some of them have you broken anything or been or crutches most say no, so for me i think how can they understand lol

how do i feel ... i have lost faith in medicine in a way because i dont have clarity i dont have the answers i want or a straight diagnosis but i hope with the x rays i have asked for i will.........
so i currently sit her with a cryocuff  with a leg triple the size after falling down a flight of stairs at the shard still doing my physio exercises trying my best and have been doing the exercises every hour of every day as requested unable to play the sport i love,  and trying to remain positive even though my quality of life is worse and im currently walking like herr flick from the series allo allo ....... but also thinking........
"was it all worth it?"    no replies please...........
« Last Edit: August 02, 2015, 12:49:28 AM by lucha86 »

Offline esm87

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Re: An athletes mpfl reconstruction diary
« Reply #460 on: August 03, 2015, 09:29:54 AM »
WOW EMMA HOW YOU DOING??????? long time no hear from you.......... hope your well =))

i also did as you did i got a private physiotherapist outside the NHS i still have her =) they spotted my abnormally small knee caps they said im an unusual case lol as my Beighton score was 5/9 so some joints are fine some are normal lol my elbows and thumbs came up as normal but my knee other fingers and flexion arms to toe came up as positive for hypermobility.........

So my independent doctor, told me to ask for x-rays of the whole leg and several different angles of the knee foot, hip and tibia, he said sometimes its better to get back to basics measure all the angles of your lower leg to make sure nothing has been missed so then a correct diagnosis can be made.........
maybe he is right to ask my surgeon for this because if i dont have a conclusive diagnosis then is it my right to ask for this considering i still have instability my knee collapsed another 3 times today..... was your surgeon aware you had hypermobility before the surgery emma?

So basically with my knee i have small abnormal kneecaps, laxity,a tt-tg score of 20 and still have dislocations/ semi dislocations post MPFL reconstruction, time to get my q angle size i think as this works in-line with the TT-TG score the doctor told me so then if that is abnormal then i might have something but just getting fed up with these dislocations

Hi Lucha!

I think 5/9 is still considered quite high? I'm not really that sure though! Yeah my surgeon was aware of the hypermobility before the surgery, I think that's why I got the TTO (tibial tubercle osteotomy) as he said there was no point in having one without the other (ie no point in having a MPFL reconstruction on it's own)

There must be someone else you can speak to regarding this? I'm pretty shocked that you've been left for so long especially when you're experiencing so many dislocations and your knee is unstable. Especially now that you've fallen down the stairs! I'd be trying everything I can to get it sorted. I'm not surprised you're getting fed up! Are you still able to go to the gym or is your knee too unstable for that?


Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #461 on: August 03, 2015, 01:31:52 PM »
Hey emma
Well with the gym i went today i could do bike tired to do cross trainer which is non impact and just gentle movement knee just collapsed semi dislocated went flying off machine lol not a pretty site lol i keep trying but it keeps collapsing lol you get up you try lol
So the independent doctor asked me to send a message to my surgeons secretary to confirm an xray to check for patella alta, dysplasia,nail patella syndrome, and small patella syndrome......

 so i have sent that request through and explained they want to rule out things but also to check there is no underlying issues which have been, when my surgeon did ring i burst into tears i explained i dont expect to nearly fall on my nephew because my knee dislocates after a surgery to stabilise it and i have had this for years and its still happening,  i have been taking pictures of my knee to show the physio even my physio in the hospital was concerned with some of the pictures.........

with someone to speak to i went with the second opinion and payed for it private as i was fed up, in which this doctor mentioned the idea of dysplasia and nail patella syndrome due to small kneecaps, so i suppose if the surgeon agrees to the xray then it will help to give clarity......

My surgeon mentioned medial reefing whatever than means, but for me i think i want to have every single think checked before something is agreed and checked to make sure all the anatomy of the knee has been fully tested and checked...... but to be honest just given up with medicine, because i have a knee that currently screwed and its not acceptable when it affects your quality of life, so that's why i think i was right to ask for the x ray.............

just carrying on........................

Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #462 on: August 05, 2015, 10:23:06 PM »
So my surgeon has given me the permission to have an x ray to check for the following hypermobility , nail patella syndrome and hip dysplasia not much lol I will have it done on Friday and gave to wait for the knee x ray permission so fingers crossed everything will get checked :)

Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #463 on: August 07, 2015, 05:48:40 PM »
so i went for my x ray today and i was rather not bemused as i had my hip x-ray the next thing i know my radiologist ask for help and then i have three radiologist looking at my x ray for about 10 minutes and leaving me on the xray slab mumbling about my right hip and my xray not saying anything to me.and rotating their heads around to different angles to look at the xray.....everyone in the uk KNOW WHEN YOU HAVE AN X-RAY YOU HAVE ONE SINGLE RADIOLOGIST IN THE NHS.....they smile send you on your way thats it ...so now im bricking it lol....... then he said your surgeon will get back to you i replied what is it bad?  i have no appointment with my surgeon anyway then the look i got was a shocked look and the speech i got was ohhhhh.... erm...... well......... im sure he will contact you.... i thought oh great lol!!

So then went to see physio the physio said what i have managed to achieve in 10 days with my leg normal patients achieve in 4 weeks i suppose the muscle stimulator and going to the gym morning and night and doing the leg press leg extension trx etc has paid off but he wasn't happy im still having sublaxtions and give ways a total of 15 last week wohooo!!! lol but he said its alot better
i asked him can a tt-tg abnormal score, small kneecap and hypermobility can it cause the joint to dislocate or collapse and he agreed and i told him i asked for the q angle of my joint to be doctor as the independent doctor said if my q angle is high too it will show my kneecap doesnt align up......
so gotta wait and see...........lol when will this ever end ........ lol just give me a diagnosis lol :p

Offline lucha86

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Re: An athletes mpfl reconstruction diary
« Reply #464 on: August 09, 2015, 01:03:17 AM »
So I feel like having abit of a release moment so...............
After a year and a half and having an mpfl revonstruction still having dislocations..... Then having a medial plica excision and arthroscopy in June 2014 I still have dislocationns.............then having three radiologist look at my hip x ray strangely and not tell me I'm beginning to get annoyed with lack of answers......so.....
The theories so far is......
1) nail patella syndrome nps - as I have a lot of the issues with this disorder

2) abnormally small kneecap, high tttg, hyperlaxity May cause significant amount of instability so why bother with an mpfl reconstruction????? Now the independent doctor wants me to get q angled checked for this reason

3) lack of vmo but this can be seen as a symptom in hyperlaxity joints and nail patella syndrome due to missing certain proteins.......

So to be honest just tired a good cry could let it out, I just want a knee that is stable not a 100% knee but stable! I don't know who to believe I just need clarity or answers, I went to london today knee collapsed while I was out with friends done had to help me I'm 29 I shouldn't have this is it a quality of life I begin to question it......I'm begging to question a lot as I still have the same issue I have had for over 15 years.........just fed up
Already feel bad enough or abit like a guinea pig when three radiologist look at your pelvis :((((( just want a
Non dislocating knee :((((((















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