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Author Topic: No knee cap for 15 years....ok for a few years now problems more aften  (Read 1371 times)

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Offline mandy121060

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I had my left knee cap removed 1985 cos of an accident smashed it in too many pieces.
I was left with weak mucsles that lift the leg from the knee down. But learned to walk on a straight leg, sometimes I didnt do it right and the leg colapsed a few times. Breaking my left elbow 3 times.
But now Im getting a lot of pain intermittently, so bad sometimes that im in a wheelchair or crutches.
I have had Xrays but they just say leave it 4 months and come back. Getting fed up now. I think its a piece of loose cartalidge or torn something. Why do we patients have to troll the internet to find out our own diagnosis?
With all the technology we have nowadays.
Anyone out there with the same problem, and if anyone has lost a knee cap are they now having pain to the extreme and what was their outcome or suggetions.
Some days im ok and can walk but then out of the blue I cant weight bear at all.
« Last Edit: April 02, 2008, 11:47:50 AM by mandy121060 »
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Offline Sandy_F

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I had a patellectomy about 15 years ago.  One of the side effects of this is that you  lose about 30 - 40% of your quad strength.  The knee cap acts as a fulcrum for your leg and gives it strength.  When that fulcrum is gone the leg gets weak and PT does not usually get it back.  I have read that a few people have succeeded in getting some strength back.  I always believed that when your knee gave out that there was always a small amount of damage done to it and over time pain was the result of the damage.  Mine would give out on me regularily.  Over time the pain level grew. 

I was lucky that when I had my TKR 9 1'2 years ago that the doc did an experimental procedure using a piece of bone removed from my knee and placing it within the patella tendon to create a "pseudo" knee cap.  I call it my pita pocket patella.  It has worked out fairly well and I have regained quite a bit of strength in that leg.  I always believed that when your knee gave out that there was always a small amount of damage done to it and over time pain was the result of the damage.  Mine would give out on me regularily. 

I have started to read that some docs are doing an actuall patella replacement.  You might want to google that to read up on it and see who/where they are dong that kind of surgery.  I don't think its widespread but if it works it might make your life easier.  I don't think your knee will be stable and not continue to have damage done to it until the issue of the lack of a knee cap is addressed. 
« Last Edit: April 02, 2008, 02:49:41 PM by Sandy_F »
Right knee - 14 surgeries including a fulkerson, patellectomy and finally a TKR.  Left knee - Lateral release, microfracture, TKR, then another LR, spacer replacement.

Offline mandy121060

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Oh Im so glad that Ive found someoine out there that has had the same as me.
I did go to Physio but they gave up on me, one physiotherapist asked my to sit on the edge of a table with what looked like an oven glove over my foot with the equivalent of a bag of sugar in each poket and asked me to do 30 lifts, 10 at a time. When she came back to me and asked how many I had done,  I told her none as I couldnt even lift the weight of my own leg up from the knee down never mind this lot. She tutted and in her own words, quote ''well if you cant lift that by now I think your pathetic'' unquote. And then walked off.
I complained but nothing was done. I was really upset as Ive been told that I was at a disadvantage to other people who had had the same op as I have always had problems with my legs since I was little and had had a realighnment of the quads tendon years earlier and never did get complete use back. Then got knocked off my motorbike and lost the knne cap in the end. So Im glad you reasured me in saying that you also have not got complete strength in your quads.
I did ask if I was to expect a new knee cap and they said I didnt need one and could live without it. Well Ive just got worse over time.
I will continue to do my research on here.
Thanks for your reply
Mandy
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Offline Sandy_F

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Most PTs don't know how to rehab anyone without a knee cap.  They don't understand the mechanics and what happens to the leg because of it.  I had to change many times and after my TKR ended up quitting because I just could not take what they were doing to  me.  I finally found a miracle worker PT that agreed to work with me and we tried things that were not in the normal "protocol" to see what would work and not generate a major pain reaction.  I attribute a lot of my success to him and his methods.  He actually listened to me and changed as needed.  It was great.

Research and find someone that is trained in some new procedures and go to them.  I don't know where you are located but I think that there is a doc in Baltimore - Wayne Leadbetter (used to be my doc) that does the patella replacements.  He has done some good things for me and some bad things for me. His bedside manner is not great but he can do some really great stuff.  He now works out of Sinai hospital in Baltimore.
Right knee - 14 surgeries including a fulkerson, patellectomy and finally a TKR.  Left knee - Lateral release, microfracture, TKR, then another LR, spacer replacement.

Offline mandy121060

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Thanks Sandy
I used to go swimming every morning at 9am for one hour over 3-4 months but over xmas and new year had to stop but I am gonna start again, but even then its really good when im in the water swimming but when I get out, my knee is very painful.
I even ride a stationary bike in the water at my local pool. To get my muscles going but I think sometimes I will never get them back.
I will probably have to have some kind of surgury as I think I have some cartlidge or miniscus damage and a piece maybe floating about. Waiting till 8th May when im having anMRI scan to see. It will be the 1st time ever i have had an MRI scan on my knee to see whats up.
Im in Spain right now.
But travel back and forth to  the UK.
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Offline chaos

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i just had a kneecap replacement. would you be eligible for that procedure?  I think my original kneecap is still there but has been resurfaced but am not sure.  i fought surgeons for years who wanted to remove both my kneecaps.  i refused to do that because of the drawbacks.  i realize you didn't have a choice.  i have to believe there are options out there for you even now when you dont have a kneecap.  just a thought.  your story touched me.  you are in a tough situation.  i wish you well.
beauty always comes from within.  the outside doesn't matter.

Offline mandy121060

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Im all choked up, thanks guys for caring.
Well I am 47 so last year my orth consultant told me he was going to start from the basic treatment and work his way up. I am too young for a TKR but he said he would not rule out the fact I may eventually need one.
I think maybe when I had the accident in 1985 and they had to take out my knee cap then I think knowing what I know now, they should have put in another one to replace it. I didnt really have a choice as mine was an accident and they were going to figure 8 wire it together but when I woke from the op they told me they took it out.

Good on you for sticking to your guns and keeping hold of yours.
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Offline Sandy_F

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Back in 87 they did not have replacement knee caps.  Its a very recent advancement and not too many docs do it yet.  You are not too young for a TKR.  I had my first on at 45.  But be careful because a TKR on a knee without a knee cap is an extremely tricky thing.  There are a lot of OS that will not even attempt it as you are not a good canidate for the procedure.  It is much harder to recoup from and if you do not have a replacement for the knee cap you will continue to have the strength problems after the TKR.  Typically during the TKR the back of the cap is resurfaced but since you don't have one there is nothing to resurface.
Right knee - 14 surgeries including a fulkerson, patellectomy and finally a TKR.  Left knee - Lateral release, microfracture, TKR, then another LR, spacer replacement.

Offline mandy121060

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So the TKR does not include a knee cap then?
Wow we ARE short changed hee hee. You have to laugh don't you?

Oh well I will see what the MRI shows, as Ive never had one on my knee before it will be interesting to see what is in there and what they say about it.

Will keep you updated after the 8th April.

Thanks you lot.
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Offline Sandy_F

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No a TKR only includes a knee cap resurfacing not a total replacement of the cap.  They just shave off the back of the cap and put on a plastic button.  If you don't have a cap there is nothing to work with.  So there lies the problem.  Thats when I got my pita pocket patella for my right knee.  Its inside my patella tendon so it did not get a plastic cap.  Its small but helps a bit. 
Right knee - 14 surgeries including a fulkerson, patellectomy and finally a TKR.  Left knee - Lateral release, microfracture, TKR, then another LR, spacer replacement.

Offline mandy121060

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Re: No knee cap for 15 years....ok for a few years now problems more aften
« Reply #10 on: April 02, 2008, 06:37:41 PM »
Well I suppose its a case of ''every little helps'' in your case.
Mine......well Im yet to find out.

Im stuck with the odd legs for the duration of my life then I suppose.

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Offline mandy121060

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Re: No knee cap for 15 years....ok for a few years now problems more aften
« Reply #11 on: April 06, 2008, 10:21:13 AM »
Well its a few days since my visit to hospital and since then the knne has just got worse, locking, unable to straightene it and painful on movement and can weight bear. In between crutches and wheelchair right now.
Can someone tell me if they have experienced the similar problems and what the outcome was?
I really suspect a Meniscus problem. Having an MRI scan in 2 days. Hope it reveals the problem and is surgery a success?
I have no knee cap so will this be more of a problem to me after surgery.

Im frustrated as all these years it has not stopped me walking, for long anyway, just a few days, but this is painful.


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