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Offline helsbels

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im back
« on: June 12, 2010, 07:20:10 PM »
hiya everyone

not sure if some of u remember me, i avnt been on for a while but decided to come back and see how you r all doing.

 nothing has changed wiv me unfortuanlty it has gotten worse. i had another operation on the right knee after ALOT of pushing to be believed that there is something wrong. i got referred to another hospital after no luck with my local one as after seeing 2 different consultants in my local hospital they both turned round and said i dont know whats wrong so there's nothing can be done. in other words live with it!!!! i would not take this for an answer so decided to see a 3rd consultant.

i was actually realy excited to see this new consultant as he specialises in knee problems and i thought brilliant someone who knows whats goin on!! oh how i was wrong :(

it took me a year to convince him there was something wrong with the knee. he wouldnt believe me at the start just kept saying theres nothing wrong with the knee and sent me to another pain doc who didnt want to know either. it wasnt until about a year later that my partner decided enough was enough.

i got the pain doc to refer me back to the consultant and in a nice way demanded to be taken seriously as he was constantly telling me im lying theres nothing wrong. AS IF i want to not be able to walk without 2 crutches, not be able to work, not be able to have a life!!!!! >:(

so i finally convinced him 2 do another mri (my 5th i fink or might of had more ive lost count) and low n behold something shows up!!!!!!!

so my next op was done - he examined my knee with the telescope and found that there were 2 small area of cartilage loss on the outer aspect of the knee both on the end of the thigh bone and the shin bone. he cleaned up the knee as much as he could. he then cut through the front of the knee to remove an area of abnnormal fat tissue. this was sent of for investigation but came back fine (wot eva fine is lol). unfortuantly the op has increased my rsd (crps). wen i went back to see him he was expecting me to be walking into his consultation room (a couple of months after the op - even though i havent walked on the leg for years!) so as u can probably guess i didnt 'walk' unaided into the room. it seemed though as soon as he saw me on my crutches he wasnt interested! he told me i should be putting weight through it and theres nothing wrong with it so im 'lying'!!!!!!! and then he discharged me! (this has just reminded me as to why we demanded another mri. my knee was locking alot and then massive bruises kept appearing and so obviously something was wrong inside! but the consultant said this cant happen uv obviously banged it n i kept saying no i havnt i would tell u if i had n then he sed the only way bruising appears like this is if it it banged accidently or on purpose!!!!! so he was telling me i was hitting my own knee to make it bruise!!!!!)

luckily i have been able to get referred back to my local pain doc who is soooooooo nice and talks to me like im a human. even he can see im not making it all up. ive got a new physiotherapist who is also very nice and understands me. and of course my gp is brilliant, he was the one who wrote a letter to the consutlant to say i am not lying or making it up and do another mri.

i had this 2nd op june 30th 2009 so i am now about 1 year post op and still no better :(

im on more medication than before the op, which is due to the rsd. and stil using 2 crutches and cant walk. im not regretting the operation as there was things he did etc but its set the rsd of more which i knew may have happened. but i was willing to try anything. the only advantage ive had with the operation is the knee isnt crunching and locking as muchand does feel bit more stable

im currently having accupuncture via my pt who has just done a course on it so hopefully that may help reduce the pain.

sorry for the long post ;) but thought id giv u some background as well as the update to save uz havin to re-read my older posts

i just dont know what to do any more. should i stay with the way things are going at the moment with physio and pain doc or should i find another consultant?

hels xxx
« Last Edit: June 12, 2010, 10:36:09 PM by helsbels »
fell on knee aug 04
op jul 05 + physio
4 mri's between 05 + 07
5 steroid inj between 05 + 06
mri arthrogram 19th nov 07 - normal
3rd opinion os appt -aprl 11th 08
op jun 09
os discharged me aug 09!
physio 09-present
pain doc sendin me to pain management course-if get into it '2010
STILL CANT WALK!!!

Offline helsbels

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Re: im back
« Reply #1 on: June 12, 2010, 07:35:19 PM »
oops

also meant to say the knee is still swollen

hels xx
fell on knee aug 04
op jul 05 + physio
4 mri's between 05 + 07
5 steroid inj between 05 + 06
mri arthrogram 19th nov 07 - normal
3rd opinion os appt -aprl 11th 08
op jun 09
os discharged me aug 09!
physio 09-present
pain doc sendin me to pain management course-if get into it '2010
STILL CANT WALK!!!

Offline Silkncardcrafts

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Re: im back
« Reply #2 on: June 14, 2010, 09:17:04 AM »
Hi Hels,

So sorry to hear you aren't doing well.

Can't remember, what part of the UK are you in ?

I would definitely thinking about going to see a sports physician privately. Glad you've got a support pain specialist, physio and GP. Can't believe the consultants you've had.

I have had trochleoplasties on both knees since I was in touch with you. It has made such a difference to me.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline helsbels

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Re: im back
« Reply #3 on: June 14, 2010, 06:21:01 PM »
hi silkncardcrafts

i live in wallasey, wirral - over the water from liverpool, down the road ish from chester.

unfortuantly i wouldnt b abl 2 afford to go private as due 2 my knee i got sacked from my job in 2007 and due to my knee unable to work  :(

i just wish i cud go private as at least id b able 2 choice who 2 c etc.
 i just dont know what to do any more.

i must admit this last consultant was an absolute joke. if i hadnt demanded another mri he wouldnt av done a thing. but even after him going into the knee and finding what he did he was still treatin me like i was making it all up. as if i would make this up, i want my life back so for what reason would i pretend i have all these problems.

were about are you? 

im so happy for you that the trochleoplasty's have made a difference for you. are you ale to walk ok etc now?

hels xxxx
fell on knee aug 04
op jul 05 + physio
4 mri's between 05 + 07
5 steroid inj between 05 + 06
mri arthrogram 19th nov 07 - normal
3rd opinion os appt -aprl 11th 08
op jun 09
os discharged me aug 09!
physio 09-present
pain doc sendin me to pain management course-if get into it '2010
STILL CANT WALK!!!

Offline helsbels

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Re: im back
« Reply #4 on: July 16, 2010, 09:02:48 PM »
hiya everyone

just thought id come and update whats happening.

in the past couple of weeks ive been told by my physiotherapist that there is not much more he can do with me so is coming to the end of the treatment etc n wil therfore be discharging me. ie giving up!

i decided i wanted to see another consultant to find out wot is going on and if anything can/will be done to help me walk again. the last one i had discharged me coz he sed he wont do anymore n kept saying i should be able to walk n im  lieing!!

anyways i went to c my gp this morning to ask if i could get refered to another consultant as im not happy that i stil cant walk and every1 seems to be giving up on me.

his answer:

 there is no point in seein anufa consultant as they wudnt do nefin. there is no cure!!!!

so in ova words im stuck lik this for eva!

he kind of sed i need to get my head round the fact there is nofin that can b done. he sed he dosnt want to get my hopes up but i may neva walk again but we never know
he reckons its the pain side that is stopin me not the knee its self. which i stil dont realy agree wiv but nofin i can do.

he was realy apologetic bout it etc as he cud c i wasnt v happy and was becomin upset etc but knew id wana know the truth which of corse i do.
i just dont undersand y no1 told me this sooner as for the past yr iv been finkin the knee stil aint fixed n so if they sort that i cud walk again.

i just feel lik cryin n givin up but know it aint gud to giv up as its only me who can sort things.


the whole time ive had this problem ive always been positive etc that they wil be able to fix my knee but obviously not and i cant see the positive any more.

i just dont know what to do  :'( :'(

xx
fell on knee aug 04
op jul 05 + physio
4 mri's between 05 + 07
5 steroid inj between 05 + 06
mri arthrogram 19th nov 07 - normal
3rd opinion os appt -aprl 11th 08
op jun 09
os discharged me aug 09!
physio 09-present
pain doc sendin me to pain management course-if get into it '2010
STILL CANT WALK!!!

Offline Silkncardcrafts

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Re: im back
« Reply #5 on: July 17, 2010, 02:37:50 PM »
Hi Hels,

That all sounds crazy to me. I'd definitely push for another opinion.

Where is Chester in relation to Bristol or Norwich ?

There are some great PF specialists there that work privately and in the NHS.

I understand what it's like when a physio gives up on you. Need to find one that specialists in knees and likes a challenge.

My trochleoplasties have gone well. Still recovering from my right knee that I had done in February. Seeing my
surgeon in about a week. Yes, I can walk unaided without the need for crutches or a brace. The stability is great
now. So happy about that. Having a few issues with my right knee, which I think is the cartilage.

Good luck with what you decide.
« Last Edit: July 17, 2010, 02:47:06 PM by Silkncardcrafts »
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline helsbels

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Re: im back
« Reply #6 on: November 26, 2010, 10:30:26 PM »
hi all

not been on here for a while but thought i would update

managed to persuade my gp to send me to see another consultant. took alot of persuading but got there in the end.

i had to say to my gp to get a new consultant that i would not ask to see anyone after this one. i just want an answer as to is there something wrong or not.

so got an appointment to go to the wrightington hospital in wigan.

went to see the new consultant and ended up seeing a registrar. wasnt too pleased but thought well ill just have to see what he says.

after reading through my notes and taking a look at my knee he  said i think there is defernatly something wrong with your knee but it could be also rsd that is causing the most problems, i want to put some anestetic into the knee to see  if it is an rsd problem or a joint problem. i wasnt to happy having the inj as they hurt sooooooo much but i knew i had to do it and was willing to try anything!

inj went in, he said go for a walk for 15 minutes or so, so it can get working and come back and see me.

15 minutes later and oh my god the pain had reduced by 60% and i managed to put some weight on it :) i havnt been able to put weight through it for so long that i cant remember when i last did!

he had another check of the joint which for once didnt hurt as he was manipulating it. i was soooooo shocked and but soooooo happy.

he then said such a shame we cant get you to see a physiotherapist now as it would be brilliant to do physio after havent the inj coz the pain has reduced etc but obviously because its the nhs etc that aint gonna happen. but he also said yes there is something wrong mechanicaly with the knee as if it was just the rsd causing all the problems the inj wouldnt have made a difference.

he decided he wanted me to carry on with physio but to concentrate on getting the muscles better and will see me in 6 weeks to discuse what the next step is.

well as you can probably guess i was over the moon, finally someone has admited there is a problem with the knee and is gonna do something about it. i was on top of the world.

the inj gave me approx 6hrs relief and for the 1st time in a very long time i was 30minutes late taking my pain meds and i didnt even realise it!!!!!

so 6 weeks later i went to see him again. i was so excited that i was finally going to get things sorted etc etc. but nope i was wrong!!!!!!

after waiting for over an hour past my appointment time, he turned round and said yes there is something wrong with the knee but im not going to do anything about it. i suggest you carry on with physio and the pain clinic. and i am discharging you!!!!!! he said he dosnt want to do surgery as it could make things worse even though there is a problem with the knee itself but he is not sure excatly what.
now i know obviously another operation could make things worse and i dont perticuarly want another op if i can help it but i dont understand why he had to discharge me. if he had said contiue with physio etc n ill see you in 12 months then atleast i would know i still had help etc but nope he wasnt interested he was discharging me :(

as you can guess i was heart broken. i had been so excited for the past 6 weeks thinking i have finally found someone who has finally found that there is something wrong with the knee like i have been saying for years and we are going to get things sorted etc.

so yet again im back to step one with not being able to walk, having continuos severe pain 24/7 and no1 who is willing to do anything to help fix the problem. but now i have the added bit of knowing there is something wrong with the knee but having no1 who is willing to help fixthe problem.

i cant see another consultant. physio is doing nothing because we have hit a brick wall in trying to get me walking. pain clinic aint much use.

i just dont know what to do anymore. i have always tried to be positive with seeing my future being able to walk at some stage but now i cant.  :'(  :'(

part of me wishes i hadnt seen the last consultant because i wouldnt have had a consultant telling me yes there is something wrong with it but im not going to do anything about it. ive always said there is something mechanically wrong with my knee but no1 believed me but now i have had confirmation that im right but still not getting any help if getting me fixed.

hels xx
fell on knee aug 04
op jul 05 + physio
4 mri's between 05 + 07
5 steroid inj between 05 + 06
mri arthrogram 19th nov 07 - normal
3rd opinion os appt -aprl 11th 08
op jun 09
os discharged me aug 09!
physio 09-present
pain doc sendin me to pain management course-if get into it '2010
STILL CANT WALK!!!

Offline Brambledog

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Re: im back
« Reply #7 on: October 31, 2011, 12:39:09 PM »
Hi Helsbels,

Been reading your story as it came up on a search about second opinions, and the CRPS caught my eye. Sorry to read of all your troubles with your knee. I hope things are a little better now and maybe you have a way forward.

I too have had an arthroscopy which doesn't seem to have rectified anything, have PF arthritis grade 3/4 which had chondroplasty done (shaving) and now my consultant seems to be changing his mind about what he did in there, how bad it is, and wants to do a lateral release which I don't think I fancy at odds of only 3 or 4 in 10 being a success. He thinks I have CRPS and has referred me to a pain specialist but it's going to take a while to get an appointment. So second opinions are on my mind.

I know it's a big money issue (once you've lost your job, money is even tighter of course - we've lost a lot because of my knee) but if the nhs has closed the door on consultants have you thought about asking a private specialist for at least an opinion? I think it's about 2-300 for an initial consultation to review your history, full examination etc (take all notes, MRIs, X-rays etc or they'll want to do their own). Ive read from other KGs that because you're paying, you tend to get a better service, and it would mean you could pick a specialist in your type of problems.

It's a lot of cash I know, but if you are really frustrated and need answers it might be worth saving up for.

I really hope things have improved for you since your last post. Good luck.

Brams  ;)

2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)