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Author Topic: who should I listen to - OS or PT? confused......  (Read 1724 times)

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Offline tanyap

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who should I listen to - OS or PT? confused......
« on: September 26, 2007, 02:00:32 PM »
Hi All,
I suffer from recurrently dislocating right patella since age 12. Surgery age 15, dislocations started 3 years after surgery and have continued and increased in frequency since then.

2 years ago I had a very bad dislocation that resulted in a stint on crutches, a visit to physio and an OS consult.
It was determined that as I hadnt been using my leg properly for years (due to unconscious fear of dislocation) that I had severe atrophy of the quads, specifically VMO - and my leg had reached a point where muscles could no longer support the joint, if i moved my leg at all the patella would slip out of place. OS said stick with physio, you dont need surgery, mechanically everything is fine, but you need to address the atrophy.

A year and a half later, Id improved muscles to some degree but still dislocating all the time. Off to a new OS, he ordered x-rays, MRI, etc.. He said I needed VMO specific physio, sent me off to a new physio practice, said come back in 2 months. Went back, he took another look, was satisfied that VMO was now present (was invisible first visit) and told me that I need 6 months to a year rehabbing the knee, but no mechanical problems, just need to build the muscles.

New physio gave me whole new set of exercises, specifically for quads, with emphasis on engaging VMO.
VMO is starting to grow alright - you can see the difference in shape of my leg and while its not automatically firing I can contract it manually.
Im still dislocating regularly.

Since I started with new physiotherapist she has been totally against physio as a resolve to this issue. She thinks that while its all very well to strengthen the muscles that I still need surgery. She is now saying that she thinks I should consider going to the UK for a consult and see can I have a surgery done outside of this country.

Ive explained to her that the opinion of 2 different OS's say its physio I need, and that although the first guy said go to physio they didnt give me any VMO specific exercises - so as far as second opinion was concerned the problem wasnt being addressed at all the first time round.

Im totally confused at this stage. I have not had any functional improvement, Im still dislocating when I walk - just walking slowly, not doing anything strange. My knee feels like it wants to dislocate on each step I take.

Who should I be listening to? The OS seems to know his stuff, he spent considerable time talking to me about the physiology of the knee and supporting muscles etc... And his opinion was effectively the same as the first OS.

The physiotherapist just keeps making me feel like Im wasting my time with physio. She is not a knee specialist.

I just dont know who I should be listening to. I dont want to spend another year trying desperately to rehab my knee if at the end of it all its no better?

Has anyone any words of wisdom on this one - my head is done in with it.
Tanya



1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline TwoBadKneesUSA

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Re: who should I listen to - OS or PT? confused......
« Reply #1 on: September 26, 2007, 02:37:11 PM »
Wow that's a stumper.  Is there a PT working with yours that specializes in knees?  If so maybe you can ask them.  It may not hurt to get a 3rd OS to look at it.  Have you talked with your OS about your therapists comments?  I know that right now I am at the strengthening stage of my recovery.  If I don't keep the muscles strong enough, I will likely have the same maltracking issues I had before.  It certainly does not hurt to get your quads and hamstrings and whatever else you can strong.  It will certainly help if you will need surgery.  My quads in the left leg shut down after mine. 

Hope I am not rambling too much here.  I think what I am saying is keep asking both sides (PT and OS) the same questions. 

Milly
'83 lt knee scope
'88 lt knee LR
'89 rt knee LR (6 mos. after left)
'05 rt knee scope (clean up)
7/5/07 - scope, LR left, right clean
3/19/08 - LR failed, Supartz failed
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=47974.0
8/21/08 - new OS apt
8/5/09 - TTT, LR, PFJR sched.

brianne

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Re: who should I listen to - OS or PT? confused......
« Reply #2 on: September 26, 2007, 02:55:34 PM »
Tanya,

I had a thought the other day about your situation.  Like you, I have suffered from dislocations since I was 12 years old.  Like you I have had more subluxes and dislocations then I can count.  When I finally visited Dr. T he told me that with the number of dislocations and subluxes I have had that my Medial Ligament was either torn or stretched beyond repair.  With no medial structures to hold my kneecap in place, it was going to continue to dislocate and sublux until that ligament was reconstructed.  So, thats what is happening now.  It seems to me that this could be a problem for you as well, worth checking into IMO.  The problem is that MPFL recons are fairly new and many OS's are unaware of them.  So you might have to do some searching around to find an experienced OS.

Logic would say trust the OS...they have been to med school.  However, the PT has seen your knee three days a week for a long time now.  So your PT would know what is happening inside your knee.  Lastly, there is you.  If you know that something is not right then that counts for a lot.  It is afterall your knee and you know when something is not right.  Don't underestimate your judgement. 

So, find another opinion, even if it means going to the UK.  Find someone who will acknowledge that something is not right in your knee.  It might be a long process, but I am so glad I stuck it out and found an OS who had the answers for me.

Brianne

Offline tanyap

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Re: who should I listen to - OS or PT? confused......
« Reply #3 on: September 26, 2007, 03:56:43 PM »
Thanks both of you for your input.

Something I forgot to mention in the initial post is that BOTH surgeons said that if I get the muscles up big and strong and Im still dislocating that surgery will be an option.

The first guy told me not to come back at all unless I wanted surgery.

The second guy said no need to come back to him at all cos in his opinion I would be fine in 6 months to a year but that if I did have problems to come back and discuss and in the meantime the physio sends him a monthly report with my latest isokinetic test result so theoretically if im not improving in strength he will know anyway (i somehow think he only looks at those reports when a patient is in front of him though :).

From my own point of view I can easily see that there is muscle filling out where there was none before (still small but visible to the naked eye now!), and as far as OS 2 was concerned he said that until VMO started firing automatically that I would still have the dislocations.

But physio seems totally dismissive of all the above. No interest in even looking at my VMO - just checks my technique on exercises and constantly goes on about the sounds out of my knee (which dont hurt and which MRI showed was grade 2 degeneration but OS said if it gets worse that he will scope it).

So~:
TwoBadKnees - I havent seen my OS since august 9th and he walked me out the door shaking hands saying 'youll be fine in 6 months to a year - work hard at the exercises - no need to make another appointment'
PT and OS are not communicating with each other at all. I did say to her to phone him when she was complaining about his diagnosis but she looked shocked and said 'i wouldnt phone him, I just send him the reports on patients he sends me'.
So OS doesnt know PT is disputing his opinion at all.


Biranne - I hear what youre saying, and from what my OS tells me, my MRI showed no problems - but that even if it had shown anything he would not expect the knee to be stable with such bad musculature ANYWAY and he also said that even if MRI had showed torn ligaments that definitely needed repair he wouldnt operate on a leg with such atrophy and would send me to physio for 6 months to a year anyway.

So I guess no matter what Im looking at plugging away at the exercises for 6 more months at least.
I find the physios comments quite demoralising. It makes me feel a bit 'whats the point?' about the physio.

Thanks guys - even articulating all that made me feel clearer about it in my mind.



1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Sore knee

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Re: who should I listen to - OS or PT? confused......
« Reply #4 on: September 26, 2007, 04:16:26 PM »
(((((((((((((((((((((((HUGS)))))))))))))))))))))))))))

Oh I can so understand, your problem is much greater than mine and it effects the quality of your day to day life. I don't know how the health systenm overthere works but is that through your GP or is private consults you have had ?

For example can you look up who deals with the Irish rugby team etc or something like that because usually their doctors have specialist backgrounds in knees from all the injuries etc. From there you can work out and see who refers patients onto them etc and find a chain of specialists for the knee.

That is how I found details on OS here.

It may save you a trip from Ireland to find one there.
Wish I could do more.
11/5/07 LR right knee and cartilage tidied up
6/8/07 Knee aspiration, steroid injection- more physio
22/8/07 Knee to be scoped for answers
16/5/08 Patella stabilisation for  subluxations
24/6/08 Infection -hospitalised for a week. Debridement surgery
21/11/08 Repeat patella stabilisation performed

Offline tanyap

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Re: who should I listen to - OS or PT? confused......
« Reply #5 on: September 26, 2007, 05:33:07 PM »
Thanks Joanne,
The first OS i saw is supposedly the best in the country - he IS the one who deals with the Irish Rugby Team etc... and he sent me to a physio practice thats run by an ex Irish Rugby Team physio - and they were rubbish!!

So then I went back to the OS who did the original surgery - the physio he has sent me to is the physio for the Irish Olympic team!! So I dont doubt Im seeing people who know their stuff - I do just wish the experts would agree!!!! or at least communicate with each other.

Its all been private consultations - I wouldnt bother with a public health consult in this country unless it was for something very basic - they just fob you off in the public health system. For years through my 20s I used to present myself to the public orthopediac consultant every six months - I just gave up going in the end, they didnt care how often I dislocated. In fact it was those guys who used to say 'if running causes dislocation dont run, if dancing causes it dont dance, if twisting causes it dont twist....' so basically they were telling me to do nothing, and that was only contributing to the muscle atrophy!!!
1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Sore knee

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Re: who should I listen to - OS or PT? confused......
« Reply #6 on: September 26, 2007, 07:14:30 PM »
 :o Ugh !

That makes even more disheartening doesn't it that you are paying these people to help you and feeling as if noone is actually working coherently together as a team. I am sorry Tanya, I wish I could help you more. Would the PT consider coming with you to a meetin g with your OS and you take charge and say you feel a review is required and say you asked your PT to come so she can say the volume of what you have been doing to no avail.

Oh I wish I could offer help, I am here to listen if it helps
11/5/07 LR right knee and cartilage tidied up
6/8/07 Knee aspiration, steroid injection- more physio
22/8/07 Knee to be scoped for answers
16/5/08 Patella stabilisation for  subluxations
24/6/08 Infection -hospitalised for a week. Debridement surgery
21/11/08 Repeat patella stabilisation performed

Offline TwoBadKneesUSA

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Re: who should I listen to - OS or PT? confused......
« Reply #7 on: September 26, 2007, 07:48:01 PM »
GGGRRRRRR!  Sometimes the lack of communication between PT and surgeon is appalling.  It is obviously frusterating.  Joanne has a good idea about seeing if they will meet together in person.  I wish I could help out more.  Too bad I'm not closer, I could just get them in the same room and knock their heads together.  May not help, but... 

Anyway you can always come vent here, we'll listen.

Milly
'83 lt knee scope
'88 lt knee LR
'89 rt knee LR (6 mos. after left)
'05 rt knee scope (clean up)
7/5/07 - scope, LR left, right clean
3/19/08 - LR failed, Supartz failed
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=47974.0
8/21/08 - new OS apt
8/5/09 - TTT, LR, PFJR sched.

Offline tanyap

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Re: who should I listen to - OS or PT? confused......
« Reply #8 on: September 27, 2007, 09:36:07 AM »
I cant seem to get them to come together - it just doesnt seem to work that way here for some reason!!!

I might be able to get the PT to ring him - but for now she is sitting on the fence saying 'i think you definitely need surgery but lets put in the 6 months the OS suggested, but i do think you need surgery'.

I asked her about ringing him before my last visit with him and she said 'ill put everything in the letter i send him' - i was not given a copy of the letter but on monday she took a phonecall and my chart was beside me so i read it. But it didnt say she thought I needed surgery!!! It was a long letter but mainly detailing progress Id made, her clinical findings as regards my knee (mentioning grating sounds, lax retinaculum, invisible VMO etc...), and a long section on my reported history. But at no point did it say 'i think the patient requires surgery!!!!'
It seems to be only me she is saying that to.

Im thinking Ill just roll with the 6 months and then go back to the OS if I dont have improvement. But at this stage Im starting to feel like Im waiting for a miracle. The OS said I would have a miracle experience, when VMO gains enough muscle fibre to start firing automatically that Id go to bed one night with a lax muscle and wake up next morning with a working one - he said it is literally a magical experience - Im awaiting that magical day :)
But I dont know if I believe his magic story!!!

Thanks guys for listening to me vent.
xx
Tanya
1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Sore knee

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Re: who should I listen to - OS or PT? confused......
« Reply #9 on: September 27, 2007, 12:35:56 PM »
Vent away - I think you have every right to. Its so frustrating I know, sometime sut feels as if we are just another number to them and yet you have to live with the daily infringements it brings into your life.

Hang in there, you always have us to vent with and I hope that makes you feel slightly better  - tomorrow is another day :)
11/5/07 LR right knee and cartilage tidied up
6/8/07 Knee aspiration, steroid injection- more physio
22/8/07 Knee to be scoped for answers
16/5/08 Patella stabilisation for  subluxations
24/6/08 Infection -hospitalised for a week. Debridement surgery
21/11/08 Repeat patella stabilisation performed

Offline EMTSgirlfriend

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Re: who should I listen to - OS or PT? confused......
« Reply #10 on: September 28, 2007, 08:42:43 AM »
Oh Tanya!

This is such a frustrating situation for you, I totally feel your pain. 

I actually agree that maybe you should check out a 3rd opinion.  From what I've read, it kind of sounds to me like you had some OS's who don't seem to actually listen to their patient.  I also think that you will have a feeling about what should be done.  As far as the therapist...I'm kind of "iffy" on that.  I've had a few good therapists who I've trusted, and they've had good input to pass along wot my OS.  I've also had therapists who've thought that they were more knowledgable than my OS, and their treatment plan ended up being detrimental to my knees.  I truly thing the 3rd opinion is your best bet, and hopefully third times the charm and you find a great OS who is interested in giving you back a full, dislocation free life.  I will keep you in my thoughts, and please make sure you post and let us know what's going on!

I've got my fingers crossed!

Julie :)
Live everyday with hope!















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