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Author Topic: What should I be doing? What should I ask for?  (Read 1137 times)

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Offline anjblue

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What should I be doing? What should I ask for?
« on: February 08, 2008, 01:19:09 PM »
I suffered a loss of patella and part of my knee joint in a motorbike accident nearly 12 years ago. I've managed with it quite well considering they originally said I wouldn't walk on it again, and have had a few minor operations.
My injury has prevented me from doing many activities and keeping fit is the hardest thing to do! Most consultants I have been to see over the years have just said 'too young for knee replacement' and that I should do what I want with exercise (apart from twisting, high impact, kneeling, squatting) as long as I can manage the pain.  Trouble is, last year I started suffering from a bad back - I went to an Osteopath who suggested that it is the way that I walk (my left leg hyperextends) which has affected my back, oh and my hips started to hurt too.  I went to the podiatrist and they told me my right leg is 3.5cm shorter than my left so obviously my knee joint has worn down, no wonder my back and hips are playing up.  The Osteopath thinks I have the start of arthritis in my hips and I have been along for x-ray, just waiting for the results.
The question is, what should I be doing? I know I am too young for a knee replacement, but if the joint is wearing down and affecting the rest of my body, surely something needs to be done to prevent me from becoming crippled!  I have always had a problem with weight as a sufferer of Polycystic Ovarian Syndrome, but have changed my diet to a low GL one and it seems to be shifting. I try hard with the exercise and do the right things, taking painkillers if necessary, but I really am worried about the future.  I have an appointment with knee consultant in March and need some kind of armoury to go in with.
Any ideas anyone?
Thanks
Andrea

Offline tanyap

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Re: What should I be doing? What should I ask for?
« Reply #1 on: February 08, 2008, 01:51:23 PM »
Hi Andrea,
You dont say what age you are - nor do I know whats classed as too young for a knee replacement but the argument you make for not wanting to end up crippled with hip and back problems is a very good one no matter what age you are!!

I really think you have presented your case excellently well in your post - perhaps you could use that as a starting point for your knee consultant in March. Its important for him to understand that as a whole you are starting to suffer in other areas as a direct result of your initial knee injury - which may be healed but the hyperextension is causing problems as is the fact that the joint is wearing down. It may be useful for you to have the oesteopath and podiatrist write to the knee consultant in advance of your appointment with in telling their findings. You may also find it useful to keep a diary of some sort detailing the exercise regime you follow and the amount of painkillers you need to take etc....

Your worries about the future are very real - the knee consultant needs to look at this case as an all over issue and not just look at it in relation to the health of just the one joint.

I think that you have really articulated well whats going on here and that in itself is going to be your biggest weapon to hit the knee specialist with as I dont see how he can ignore this situation.

If he says 'too young for knee replacement' ask him what are the other options to prevent damage elsewhere and at what point will he feel you are old enough - get him to justify allowing the rest of the body to deteroiate rather than doing the knee replacement resulting in hip replacements and back problems etc...

My boyfriends father seriously damaged an ankle in a motorcycle accident many years ago - at the time the doctors were going to amputate from the knee down on the affected leg but then decided to just sew it up and hope for the best. the ankle was so badly damaged that there was no way of fixing it. He has managed remarkably well over the years, like you he has had to exercise and keep the ankle limber, but has always walked differently because of it and has plenty of pain and swelling over the years. He needed 2 hip replacements in his early 50s - as a direct result of walking awkwardly on a damaged joint for 30 odd years. Its not something that a doctor should ignore. In his case there really was nothing they could do but perhaps in your case they could give you a replacement and even if you needed another one in 10 or 12 years time then at least itd be 10 or 12 years that you were using it properly? Thats just my thoughts. I wish you all the best with your 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 anjblue

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Re: What should I be doing? What should I ask for?
« Reply #2 on: February 08, 2008, 02:03:00 PM »
Hi Tanya

Thank you so much for your quick response to my post. I have never tried posting anything on a website about my knee before so am very encouraged!
Sorry I missed out a couple of important things - I'm 33, had the accident when I was 22.  The bad knee is my right one, and my left knee hyperextends to compensate for the unequal leg lengths (and sometimes get pain in my left knee as, I assume, a direct result of the right one).
The other reason that consultants have given for not doing a replacement is that they usually do it with people who are in so much pain that it affects their day to day life.  I don't have that kind of pain luckily although recently it has deteriorated a little especially following exercise.  But the point you make about preventing damage elsewhere surely now has to be taken into consideration.
Thank you again for your advice, I will take it with me when I go.
Andrea

Offline rozzzie

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Re: What should I be doing? What should I ask for?
« Reply #3 on: February 08, 2008, 02:08:01 PM »
Andrea,

Sorry you're having so many problems.  Dr's are beginning to realize that when your knees are shot, you need help now not when you turn 60.  It's about quality of life, if your quality of life gets to the point that you are seriously considering a TKR then it is probably about time, there are many young people among KneeGeeks that have had TKRs at young ages.  With care a knee should be able to last you 20 or so years, maybe longer.  The materials used in the current knees have not been around long enough to know the life span but at 5 and 10 years life they look great.

You need to talk frankly to your OS about your quality of life and if he is still resistant find one who will listen to you.  I'm not saying that it is time for you, only you can make that decision, but when it's time it's time.  TKR surgery is rough, there are serious complications that can arise, and it will not get you to a place that you were many years ago, but it may be right for you.

Talk to you consultant about your quality of life issues, about the new problems that may be knee related and express your desire to look at a TKR.  You do want an OS that specializes in replacements or at least knees and does a lot of TKRs a year.  I read about a study that showed that Dr's that do lots of TKrs have fewer complications in their TKR patients.  I think they said that 100 was the breaking point, but I'm not sure exactly what that number was exactly, but more is better.

Good luck, and stay in touch.  There is section down under arthritis on TKRs and there are a number of people posting there.  Check us out, and read some of the threads.  You should get a good idea of what a TKR is like.  There are also several post op diaries on TKRs.

Good luck

HUGs
Rozzzie
OA of knees since 85 
93 scrambled ankle - PE
98 PE
99 anlke fusion
04 hit by car broken leg, ribs AC joint seperation
RTKR  Dec 1 2005
LTKR. IM rod removal March 16, 2006

Offline eaglemom

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Re: What should I be doing? What should I ask for?
« Reply #4 on: February 08, 2008, 02:22:09 PM »
If you want to be upset listen to what my os told me.  He said many os's will not do a replacement simply because of insurance issues.  He said that in a persons lifetime insurance will only pay for one replacement.  If someone receives the replacement in the early years 20, 30, 40, 50 or even low 60's the knee will be covered by their current insurance, which makes sense.  However, that replacement knee will not last forever so most os replace only after a person is in their 60's so the replacement won't have to be replaced at their own expense.  He admitted the system stinks.  He also said he considers "quality of life" always.  He will do a replacement on us younger ones only as a last effort, but will do one.

Write down all of your questions for your appointment and make certain you can clearly explain your situation.  I personally feel we walk into the os and start to tell them our knee story and some simply don't listen (like my previous os).  We have to be our knees best voice to explain what is wrong and what we would like to do. 

I'm just 3 month's post surgery trying to rehab the old knee - but we've done this surgery trying to put off the replacement for 5 - 10 years.  If it works great, if not oh well.

Hang in there, Eagle

Offline tanyap

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Re: What should I be doing? What should I ask for?
« Reply #5 on: February 08, 2008, 02:27:10 PM »
Hi Andrea,
rozzzie gives some wonderful insights in her post there, and it IS about time that DRs realised that you need the new knees before the rest of you is too botched up for a new knee to be of any use to you!!!

33 is young - but if you got a knee that lasted 20 years then you could have a second at 50ish thatd take you into your 70s!!!

Gather all the info you have, what the oestopath has said, the podiatrist, etc...your exercise routine, painkiller usage, give an indication of pain levels and when you suffer from pain etc.... Make a big neat summary of all the relevant info and either fax it over ahead of your visit or bring it in like a meeting agenda - I find if you and the OS are both looking at the same sheet of paper its easier not to forget bits. Note all the issues you are concerned about. Consultants are generally pretty organised people so its nice for them to have something concise to read from!!!

I think you will get somewhere if you do as rozzzie says and keep on looking for someone to listen if this guy wont. Oh and welcome to the knee board!!! If you wish to be bored silly you can look over some of my posts of me moaning about my knee :)
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 anjblue

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Re: What should I be doing? What should I ask for?
« Reply #6 on: February 08, 2008, 02:34:55 PM »
Hi all, wow - thanks for your advice and suggestions I really should have done this a while ago - chatting to people with similar problems really does open my eyes and give me a different perspective.

 TKR does sound very scary I have to say and I guess I am sort of hoping that there are other operations which can be performed to improve matters before I get that far. It's really about preventative measures I suppose. When you say find one who will listen to you, how do you go about locating and receiving the services of another consultant, I thought that we didn't have a choice who we went to these days.

I will have a look at the threads you mentioned, I'm finding all this very interesting and informative - glad I registered on the site now!
One thing would be useful if anyone can help - exercise! Any hints or tips from people on exercise I can do that's, dare I say it - fun?! Most people assume that swimming is good for me but I find it difficult to kick properly. I like yoga but don't think my back does, so it is really just the gym.  Should I post a new thread for this though? (you can tell I'm new at this).

Thanks again, I think I will come back here and post an update of what the consultant says. 
Andrea x

Offline tanyap

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Re: What should I be doing? What should I ask for?
« Reply #7 on: February 08, 2008, 02:46:28 PM »
When you say find one who will listen to you, how do you go about locating and receiving the services of another consultant, I thought that we didn't have a choice who we went to these days.

Hi,
It all depends on where you are I think. In Ireland you can do the merry go round of the consultants as much as you like. If you get no joy from one your GP will send a referral to another (private or public). I dont know how it works in other countries though.

Yeah go for it - post a new thread about exercise!! A meaningful title name gets you most replies as people will automatically have a read of something they know about (have found this over time myself) so make sure to say something the lines of 'best exercises for knee with no patella' or something similiar.

Glad you have found us - this is such a nice board to be on - everyone is so helpful.
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 cat

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Re: What should I be doing? What should I ask for?
« Reply #8 on: February 08, 2008, 03:16:10 PM »
Yoga can be great for your back but only if it's done properly. First you must always remain in the pain free zone. If it hurts, don't do it. Back off. Ask the teacher for another option.Then you must remember to always engage your abs and glutes when going into or out of any forward bend and with short lever- ie- keeping arms close to the body. Also, keeping a bend in the knee can be helpful. You might want to avoid seated forward bends and twisting postures for a while too. If you have low back pain in Warrior 1 or Crescent Pose, try bending the back leg a bit to see if that helps.
I LOVE yoga and it has been great for my knees.
Good luck,
 ;D cat  ;D
"Miserable malalignment"
 Lateral release, medial reefing, VMO advancement, and TTT-  3/2/04
Screw removal- 5/24/05
Cortisone injection to pes anserine- 7/27/05
Femoral derotation osteotomy, TTT revision- 10/18/07















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