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Offline maria1985

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help getting really fed up
« on: September 16, 2005, 12:03:58 PM »
hiya im new to this so im gonna start from the beginning.
began having pain in the knee when i was 10 (im now 20) doctors put it down to growing pains but eventually i stopped growing the pain got worse and they could no longer use that excuse. since then i have had a lateral release on the right knee which has not worked and spent 3 months on crutches then i had another op i think it was called goldwiths (im not sure) it involved moving muscles and nerves around in the knee but it wasn't explained to me very well i had to spend 6 months in a knee brace which got a bit depressing as it was throughout the xmas period and my 18 birthday.the pain since both ops has become constant.the pain i get is around the knee especially when kneeling and walking up and down the stairs, and i definatly can't put any weight on it when sitting down, just basic everyday things i can't use ice packs as my knee is very sensitive to it since the 2 ops. the doctors/surgeons don't know what the problem is which is what makes me angry as they have operated on me 2 and both times got it wrong.i dont know what to do as im not getting any answers from the doctors i go back to them in november as i have just come out of hospital after spending 2 weeks doing intensive physio which was extreamly painful.no one has any answers for me.i don't know where to go from here i've already had a second opinion but all i get told is that "could be one of those things".
sorry this email is long but i really need some advice as i don't have a clue about where to go from here. so if anyone can help me your suggestions are welcome.

thanks so much
Maria.
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline Michelle.2

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Re: help getting really fed up
« Reply #1 on: September 17, 2005, 12:42:40 AM »
Hi Maria,

I've had a lateral release nearly 6 months ago which hasn't worked and my surgeon has recommended that I consider the reconstructive surgery that you have just had. I'm really against it, and believe my surgeon has got the diagnosis wrong, so have been referred for a second opinion. However, a friend of mine has had this surgery, and did make a full recovery! Sorry you are having such a bad time, I know i'm a misery too, but hopefully things will improve with time. You are only young, try and find out as much as you can about your condition, and seek further medical advice. Keep your chin up X
« Last Edit: September 20, 2005, 09:17:00 AM by Michelle.2 »

Offline maria1985

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Re: help getting really fed up
« Reply #2 on: September 17, 2005, 07:12:33 PM »
thanks michelle
your right though i do really need to find out as much as i possiby can bout my condiction
and you should go for a second opinion if you feel that the surgeons havn't been succesful.
when they keep operating and getting it wrong it just makes the whole situation worse. trust me thats what im going through at the moment.
i hope everything goes well for you

maria.
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline annaliese

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Re: help getting really fed up
« Reply #3 on: September 18, 2005, 03:52:59 AM »
Hi Maria and Michelle,

I sympathise with you both fully - like you, my knee problems really started when i was 11 with my first kneecap dislocation. I was told for years to just "put up and shut up" but got fed up and demanded a solution - and an appointment with the best knee surgeon in New Zealand (yep, I'm a kiwi!).   It took three surgeons looking at my knee before the best one in NZ (who trained at Harvard, conincidentally!!!) decided to send me for an MRI and then operate.  I've had my reconstruction now, and I'm making slow but good progress.

The first two surgeons basically told me they wouldn't operate, it was pretty much all in my head, and that I had to do lots of exercise to stabilise it.  Ha! What a joke.  >:(  One sent me for an MRI but didn't really look at it and told me to go spend some time on a stationary bike.  The second just sent me off to an exercise program with a PT and got some xrays done before saying that she wouldn't operate because it wouldn't fix anything.

Well, no amount of exercise will fix birth defects...my kneecap was popping in and out like a jack in the box whenever it felt like it, and did not track properly.  My legs, arms and spine didn't form properly in the womb and I've been suffering with dodgy knees for 17 years before I found a surgeon who took me seriously.  My choices from this wonderful surgeon were - continue to put up and shut up, or have the surgery and a chance at a normal life - I chose the surgery (LR/TTT/PFR, etc) and although it's been a tough nine weeks so far, I'd do it again in a second.

My advice to you two is to find another surgeon, get a second or third or even fourth opinion if you are not happy.  Persevere - don't give up, and keep believing and having faith in yourself.  The best judge of whether something is right or wrong with your knee is you - you are the one that has to walk around on it for the rest of your life, not some jumped-up overpaid surgeon with a huge ego and no bedside manner.  :o 

I know it's hard, it is tough and that the exhaustion and pain and feelings of hopelessness are really overwhelming.  Sometimes all you want to do is cry and shout - often both at the same time.  I've been there myself and I can understand and appreciate what you're going through.  You get sick of crutches, surgery, hospitals, xrays, MRI's, braces, stitches, not being able to walk, sleep, sit, stand, climb or go down stairs, dress yourself properly, shower standing up, cook your own dinner, wash your hair, clean your house, make your bed, etc.  It sucks - big time.  It would be nice if the surgeons we get stuck with had to go through all this themselves - then they might have a little compassion towards us.

Hang in there - read the posts on this site, learn as much as you can, ask lots of questions and don't give up!!!!

Stay strong girls and keep us posted - I'm happy to be your cheering squad!
AnnaLiese from New Zealand  :D
Patellofemoral reallignment, chondroplasty, LR and TTT (L) knee 07/13/2005. 
Currently post-op, down to single crutch and no more brace!!  Screws are named Sid and Nancy :-)
Meniscal tear repair by arthroscopy/menisectomy (r) knee 08/02/2002
Recurrent subluxations of (L) kneecap since 1989

Offline mmmary

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Re: help getting really fed up
« Reply #4 on: September 18, 2005, 07:35:38 PM »
Maria,

I posted my first post to Knee Geeks "Knee Pain since childhood" and then read your "help getting really fed up."  Did no one ever mention fallen arches to you?? You can do a lot of exercises in the pool.  I thought real knee doctors were on this site to help answer questions.  It's been interesting to find someone who has had the same problem I have had all my life.  Hope to hear from you.

Knee Pain Since Childhood

Offline kath

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Re: help getting really fed up
« Reply #5 on: September 18, 2005, 08:09:05 PM »
Maria...don't give up searching for answers.  First off, you need to get another opinion or two from an OS who specializes in knee problems.  If you had a Roux-Goldthwait procedure, it was to correct your alignment, and the recovery from the procedure is long.  It also sounds like you are suffering from some nerve damage?

Don't accept "it could be one of those things".  Arm yourself with as much information as you can, by researching and reading about your symptoms.  This site is a good place to start as you can make contact with those who have walked and are walking in your shoes!  If your current doctors have given up on you, then it's time to find one who will help. 

Go to the main website page on this site and click on Knee Surgeons on the left side of the page.  You may be able to locate someone in your area.  Also, read through the different topic headings on this bulletin board.

Good luck!  There is help out there, it's just a matter of being persistent.

kath
« Last Edit: September 18, 2005, 08:33:43 PM by kath »
Bi-lateral unicompartmental Nov 2004

Offline maria1985

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Re: help getting really fed up
« Reply #6 on: September 18, 2005, 08:30:53 PM »
ahh hi guys
thanks for all your advice and your all right i need to get more info and i think i do need to see another  surgeon. this is my 2nd opinion already but when i spoke to my parents they mentioned about this surgeon who only specialises in knees so once i go to the hospital in november if i feel that he isn't helping then im going to make an app with this other one.
thanks for the info bout the knee surgeons on this site i had a look at some that are actually in my area so i've taken note of them and i'll be keeping them in my mind (just incase i need 3rd 4th 5th or even 6th opinion.i've started going to the gym 3 times a week (recommended by my pt) and oh my god it hurts but i feel like i have to push myself to the limit even if i feel sick with the pain other wise when i go back to the hospital they'll just say to me that i don't want to help myself if i dont push myself to the limit.
the mri scans havn't shown up anything which is why they dont know what to do but im sick of them treating me like "its all in my head" because like you mentioned at the end of the day they dont go through the pain that we all do if they did then they might actually be more understanding towards us.

luv to hear from you all again
maria.xx :)
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline kath

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Re: help getting really fed up
« Reply #7 on: September 18, 2005, 08:38:51 PM »
Maria...MRIs don't show everything.  Also, if you are in so much pain that you feel sick..then you need to get some help with pain management.  Push to YOUR limit, not the hospital's limit!  Continue to RICE, and find a good physiotherapist who will treat your particular situation.  Don't ever be afraid to speak up if something is not feeling right to you...

kath
Bi-lateral unicompartmental Nov 2004

Offline Michelle.2

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Re: help getting really fed up
« Reply #8 on: September 20, 2005, 09:22:16 AM »
AnnaLiese, thanks for the reply.
Maria, let us know how you get on and good luck x

Offline maria1985

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Re: help getting really fed up
« Reply #9 on: September 21, 2005, 11:20:39 AM »
thanks michelle
i'll let you know how i get on when i see my surgeon in november.
you have to do the same aswell

luv Maria
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

shadehawk

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Re: help getting really fed up
« Reply #10 on: September 21, 2005, 12:54:41 PM »
Maria,

Hi there, I went through two years of doctor's telling me maybe something was wrong or 'all in your head' or nothing can be done anyway......but, they all got a big fee for telling me nothing.  I travelled out of area to another doctor a knee specialist and just by watching me walk he knew I had bad knee pain with weight-bearing.....(I kept trying to tell doctors that and no one listened)  this doctor knew that before I even opened my mouth.....

It does not matter how many doctors you visit - you need someone that knows knees to understand what is wrong and then give you options of how to treat the problem with exercises, braces or surgery.....

Good luck to you,

Shade

Offline maria1985

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Re: help getting really fed up
« Reply #11 on: September 21, 2005, 01:31:10 PM »
thanks for the info shade
my next option is to actually see a knee docter after i've seen my existing surgeon now.
the thing is even though im really angry about basically being told that its all in my head i can't argue with this docter about operating on me because he wasn't the orignal surgeon that operated on me so he has just taken my case on. he sent me to national otherpiedics hospital in stanmore to do 2 weeks intensive physio i have only ever seen him twice. but after my visit with him in november if he is no help at all then i will be seeing soneone else because i find that being in pain everyday really messes up your life.i even struggle with going to college as i have to travel by tube and then sitting in lectures its just so uncomfortable.
i work part time in a shoe shop which involves a lot of running up and down the stairs and ladders and kneeling down.so i do really want some answers.
been looking on the internet trying to find sites that maybe can diagnose the symptons i have but not really getting far with it so if anyone knows of anything then please let me know.

hope things go well for you shade
Maria.xx
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline slyguy1

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Re: help getting really fed up
« Reply #12 on: September 21, 2005, 02:09:21 PM »
Maria,

            Don't give up.....go around the world if you have to but please save your knees....i pray that you will get better and someday be running 10k race....let's share this goal:)

Joe

Offline maria1985

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Re: help getting really fed up
« Reply #13 on: September 24, 2005, 06:04:21 PM »
thanks joe
if running the 10k would take away the pain then i would triple it even if it just meant being in pain for a few weeks.i think we should share this goal together aswel.
i've had enough at the moment.feeling bit sorry for myself broke down at work and just started crying it was embarrassing.been in so much pain this week (worse than usual) taking tramadol but i seem to get all the side effects when i take them which just makes me feel worse.
i can't even concentrate on my college work because im constantly in pain even when sitting down.
im so frustrated. sorry i just keep moaning but this is like the only time i talk to people about it as i never open up to my mates or work people about it i keep trying to shut down from it but its not working as i can feel the pain is getting worse.
once again im sorry that all i done is complained in this email.
Maria,xx
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline annaliese

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Re: help getting really fed up
« Reply #14 on: October 16, 2005, 03:53:21 AM »
Maria,

Please, please, please....go ahead and please complain until you're blue in the face if that is what you need to do!  We're all here to help you as much as we can and I for one am so utterly grateful that you and I both found this site!  It's nice to be able to "talk" to people who are going through the same (or similar) things.  People without knee pain just don't get it - and until they've been through it themselves, they have no idea what we are going through.

My money is on that "knees only" specialist doctor that you're going to see.  My surgeon only does knees, whereas the two I saw before him did general orthopaedics - meaning jack of all things orthopaedic but master of none!!!!  They could probably have helped me if I was a kid with a broken leg or had broken my hip, but when it came to knees, they were clueless!  My surgeon really is the shizzle, and I'm sorry you don't live in NZ and can't see him yourself!

I know it's tough - mentally, physically and emotionally (and even socially!) but you've got to hang in there!  I understand and appreciate your frustration - so go ahead and vent it on this site, we're all here for you (aren't we, guys?)!!!

Hang in there buddy!
AnnaLiese  :D
Patellofemoral reallignment, chondroplasty, LR and TTT (L) knee 07/13/2005. 
Currently post-op, down to single crutch and no more brace!!  Screws are named Sid and Nancy :-)
Meniscal tear repair by arthroscopy/menisectomy (r) knee 08/02/2002
Recurrent subluxations of (L) kneecap since 1989















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