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Author Topic: app with OS next week - terrified!!  (Read 1236 times)

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Offline tanyap

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app with OS next week - terrified!!
« on: May 30, 2007, 11:50:12 AM »
Hi,
Thanks to this board and the support ive gotten here ive decided to stop suffering and go back to see OS.

Had surgery 18 yrs ago for recurrent dislocation of right patella, by the time they operated there was a variety of damage to be repaired so surgery was more complicated than originally anticipated, bone graft, cartilage repair, pin patella tendon down.
Knee started dislocating again within 3 years but only during risky activities, running, contact sports etc... everyday life was fine.
over the years dislocations/sublux's became more frequent, less severe. got used to having the odd event, would be sore for a few days, a couple of occasions on crutches but then back to normal, and felt stable in between.
over time compensation caused muscle atrophy, wasnt even aware of it until a massive dislocation 2 years ago. this was followed by some more dislocations and i lost my 'kick'. went to see OS, he said seeing as muscle atrophy was so bad physio was the way forward. also said there was likely ligament damage but did no examination except to take history and do knee exam himself - no x rays, no mri etc..

have been on intensive physio program for 2 years now. have felt unstable every single day. have suffered at least 150 dislocations/sublux's in that time.  have built up muscles but movement is so restricted, if i move suddenly or walk faster than stroll i will dislocate/sublux. very rarely happens when weight beaing, usually just on last bit of extension, happens in bed, when i try to walk anyway fast, if i pivot, if i wear different shoes.
my quality of life has dimished over the past 2 years, now i dont go anywhere socially unless i really have to, i cant walk anywhere with any degree of pleasure, am only leaving my house when necessary, and movement within the house is restricted to necessary also. physio has been going on about 'subjective instability' - i always felt it was not just in my head. this board gave me confidence to believe in what my body is telling me.

had a massive dislocation yesterday, leg is unusable since, happened walking into the loo in work.

made an appointment to see OS - couldnt get appointment with last guy, this time i made an appointment with guy who done original surgery 18 years ago (found him by accident). appointment is next thursday 7th june.

im praying that this guy listens to me. if he has no options to offer i really dont know what i will do. they have always been against second surgery (over the years have seen many OS's on 'routine' check ups), stating that second surgery might not work, recovery time will be difficult, may be no advantage. this was ok when i was only dislocating with 'risky' activity, but now i cant walk without risk anymore.

anyone got any advice on how to approach OS - i want to write down a list of points to make, and get across to him how much my quality of life has dimished but im afraid i will become emotional and make a mess of it. i dont want him to think im just upset and making things out worse than they are.

if he says he cant do a surgery what should i do?

any advice much appreciated, im really at the end of my tether now, feel like i should take to crutches and stay on them instead of battling through such instability all day every day.
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: app with OS next week - terrified!!
« Reply #1 on: May 30, 2007, 02:49:42 PM »
First of all I am sorry to hear you are in such difficulties.  Definately make that list of points and/or questions.  If this OS doesn't have anything to offer, maybe another would.  I have had other medical people tell me that I should not be having pain.  I even told one OS that is was not his knee but mine and it hurt!  Honestly if you have dislocations I don't think there is anything subjective about the instability.  Getting another PT may be a good thing too.  Too often they get to much in a rut and don't listen to what you are saying anymore.  Best of luck at your appointment.

I keep you in my thoughts.  Hang in there. :)

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 Nettan

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Re: app with OS next week - terrified!!
« Reply #2 on: May 30, 2007, 03:47:14 PM »
There must be some hope for you too. You need to find a doc that is good in the problems you have.
And also a phys that is good in your problems.
The continued dislocations/subluxations will give you more and more damages.
I can't see that why you shouldn't be able get help with this in some way. And if there is some new ligament damage this can make the whole thing for you worse.
Don't give up until you find a OS that listens and can your problems.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline tanyap

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Re: app with OS next week - terrified!!
« Reply #3 on: May 30, 2007, 05:02:55 PM »
Thanks Milly and Nettan,
Your words of support mean a lot. Besides the physical difficulties theres a huge emotional impact in not being able to be 'free' in movements, having to cancel events rather than suffer at them, I even feel like my relationship with my partner is suffering because Im so reluctant to do anything that might bring on another dislocation.

I dont think there is anything subjective about the instability either, and certainly after 2 years of intensive physio (ive had 3 different physiotherapists in that time but each one starts out full of enthusiam and as I dont improve they all seem to give up), it cant be said that I havent tried to help my own body as much as possible.

Nettan what you say about new damage is so true - I wonder does my history make the docs a little dismissive 'oh she has had lots of dislocations so this is probably no different' - whereas 2 years ago I DID have one that was different and Ive never recovered stability since.

This board is a godsend, Ill keep you posted as to how things go with the appointment.
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 del

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Re: app with OS next week - terrified!!
« Reply #4 on: May 30, 2007, 11:56:57 PM »
hi  there sorry to hear your problems,i had  troubles with my knee sublaxing i had 5 ops in 6 yrs,firstly its you who has to live with the problem not them  so makes sure the os hears your concerns, secondly  they are human too some may have never come across your problem before or may mis diagnose so find the right person (os) www.specialistinfo.com

Offline tanyap

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Re: app with OS next week - terrified!!
« Reply #5 on: May 31, 2007, 06:43:53 PM »
Hi Dan,
Im seeing the OS who done the original surgery 18 years ago - he fixed it once, im praying he can fix it again!!

Do you still sublux? My biggest concern right now is that he wont be able to do anything to help - ive seen plenty of OSs over the years and they have all shied away from a second surgery on me, in retrospect i can see that i had a very full life back then in comparison to now - i used to cycle to the cycle a lot, had a job where i was on my feet, was in college, taking buses, dashing about the place, going out, dancing.
i used to ask them could they stabilise it so that i could run - but running and sports that involved pivoting or contact were always out.

but now i literally cant walk a step without feeling its about to sublux/dislocate - ive no quality of life, i never go anywhere unless its absolutely necessary, its just instablity all the time. If i were to do all the things id like to be doing id be subluxing or dislocating pretty much every day!! In fact it was happening every couple of days for a long time, but i just slowed down so much and stopped going anywhere that the opportunities for it to happen were lessened. but thats at the cost of quality of life - the problem is still there!

my worst nightmare is that this OS is gonna say there is nothing he can do. I really dont know what i will do if that happens.


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: app with OS next week - terrified!!
« Reply #6 on: June 01, 2007, 02:24:54 PM »
I hope your old OS can be of some help to you.  Seeing that he did your surgery before, he may be more familiar with your situation.  It really stinks when you can't even do simple things like get the mail or the newspaper without pain or fear of pain.  I think that even good docs have a diffucult time understanding issues unless they have had a similar one.  Best of luck.   When is your appointment?

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: app with OS next week - terrified!!
« Reply #7 on: June 02, 2007, 01:29:51 PM »
Thanks Milly,
Its Thursday 7th June, so less than a week to go!!! Ive written up a brief but clear history of my knee for the OS, Im just praying he can do something to help me.
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: app with OS next week - terrified!!
« Reply #8 on: June 04, 2007, 04:52:16 PM »
The written history sounds like a good idea.  Don't forget to keep a copy for yourself.  I hope he can help you too.  I be thinking about you.  Good luck.

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.