The patello-femoral joint :

patella removal....anyone had it done? - - Posted by theartsinpain (theartsinpain), 7 October 2004

My Os said I need to have a patelloectomy....has anyone out there had it done?   He also does not want to replace it ( the Patella)  any help out there?
Posted by Leta_MT (Leta_MT), 8 October 2004

From what you will see on this board, it is not advisable. I think you need at least a 2nd, 3rd and 4th opinion and even then, I'd think a very long time before I let anyone perform a surgery like that.

Leta
Posted by hmaxwell (Heather M.), 8 October 2004

Don't do it....

Use the search feature to look up 'patella removal' and 'patellectomy.'

In my experience and from listening to others, this is the last resort of a surgeon who is in over his/her head.  Find someone else.  It seems so logical...if the patella hurts, get rid of it!  Except that you need your patella!  You came into the world with two of them, they serve a crucial role, and your knee will never work the same without them.  And there is no way to replace the patella per se, all you can do is have a partial knee replacement that resurfaces the back of the kneecap and the trochlear groove in which the kneecap moves.

If you could put up your history, your diagnosis, and the surgeries you have gone through, I have no doubt you will find at least half a dozen others who have been through the same thing.  They can likely provide you lots of other ideas besides cutting out your kneecaps.

Heather
Posted by theartsinpain (theartsinpain), 8 October 2004

I had a patellar cyst removed from my knee six years ago..it was about the size of a pea. Now it has taken over  about 3/4 of my knee...the  cyst was benign . the  first surgeon did not get it all... DUE TO THE SIZE OF THE  cyst, they cannot do any bone graphs...too large an area.. the surgeon I have now is the top surgeon for  the MN Twins, Vikings, and the MN Wild...he is the top in the midwest... and all he does is knees... he replaced my brother-in -laws hip..no comps.....( awhile back). The issue is the area that is necrotic cannot hold the bone graphs... so this is really the only choice...or so I know... Any help?

Posted by RGrelsamer (RGrelsamer, MD), 8 October 2004

Occasionally it's the right thing to do: bad fracture, infection, tumor...
Most of the time there are better alternatives!
Posted by theartsinpain (theartsinpain), 8 October 2004

What could some of the other options be.....as it appears that the size of the cyst  would make it hard to fill with bone......I am looking for ANY other option.... Any recommendations?

thanks
Posted by bajalady (bajalady), 8 October 2004

You case sounds very rare. Most on this board are just people who have had a bunch of surgeries and not qualified to advise you if there are any surgical options to you other than patella removal.

I was told years ago by more than one OS to have both kneecaps removed. I chose not to to this and although my life have been one of apin and disability, I'm glad I still have my "caps."

But your cyst situation is entirely different than mine and most others on the board. You need to see some super specialists maybe Mayo, Cinn. Clinic, or Duke U. etc. just to make sure you really have only one choice. Patella removal is still done today in rare cases. You might be one of those cases but only make a decision after you hear it from more than on OS's mouth.

Posted by maxfactor (maxfactor), 11 October 2004

I had bilateral patellectomy 23 years ago. I had chronic patella dislocation. The dislocations happened often, and they were very painful. After a few failed surgeries I had the patellectomies. I can't run, kneel, jump, and right now, I'm barely walking. I can tell you that I had a good 19 yrs of tolerant pain, not bad at all. But I could still do nothing. The last 3 years my pain has progressed. Every Doc I've seen has told me that was a huge mistake. I didn't have a tumor though. You will automatically lose 30-60% of your quad strength. The surgery is also quite painful. Actually, it hurt worse than all my other surgeries. I can't imagine other options with a tumor though. Let me know if you hear of something else. I'm beyond help, but would be interested to know how yours will turn out.

Jane
Posted by theartsinpain (theartsinpain), 12 October 2004

Jane ,

I appreciate your insight.....I am going for a 2nd, 3rd and 4th opinion this week...I am even going to Mayo to see what they say....I'll keep you posted....man I can't believe all the surgeries people have had...is it me or does it seem that once you have surgery on the knee that it open up "Pandoras box?........" and you have to have more and more work done to correct the first problem......sheesh!!!!  I guess it is what the surgeons call job security......( but at what cost and to whom...??

Thanks
Reid


Posted by maxfactor (maxfactor), 12 October 2004

Reid,

It does seem like a pandora's box. In my case the surgeries were all 70-80% successful. It just happened they weren't with me. Also remember that many people on this site come here for support and information because their knees hurt. All the successful knee ops have no need to come here and I know there are millions who have successful ops without having more. My case was probably congenital, made worse through sports (basketball, softball, volleyball, field hockey).

Also, while probably 99% of people will tell you NOT to remove the patella, I'll be the devils advocate and tell you that there is life after patellectomy. You may want to compare it to your life now, however. If your tumor isn't causing pain, nix the surgery. If you're at the end of your rope with and no one can get to it without patellectomy, I would do it. Please, just my opinion. After my bilateral patellectomy I could ride a bike, swim, play baseball (with a runner when batting and only play 1st base) walk a couple miles. No swelling or ROM problems. And I've never been hit directly on the knee. Like I said, I had 19 years of a relatively good life. I don't know what's going on now, causing all my pain, but hopefully I'll find out soon. So while patellectomy should be last resort and many say stay away, I say you can live without your kneecap for a good while. You have to rehab though. My rehab (remember 23 yrs ago) was biking. I rode my bike to college 18 miles round trip. I was never sent to formal rehab. Anyway, good luck to you. I hope you don't have to do it, but if you do, you can make it. Don't hesitate to contact me anytime. I'll keep you in my prayers.

Jane
Posted by theartsinpain (theartsinpain), 13 October 2004

Saw a new OS yesterday..he had a new plan...lateral relaese  ....Elmslie trillat......he thinks the tumor is just gouty material( uric acid crystals)....I like his approach best....he thought it was rather radical to remove the patella....I agreed...thanks to everyone who wrote back.. with patellevtomy issues/knowledge..now onto another topic of lateral release... he says 6 weeks to touching my toes...do they have to place a cast on?
thanks for any info all...!
Posted by Helen_uk (Helen uk), 17 October 2004

Hi there
Just to add to what the others have already said I have had billaterall patellectomies some 20 yrs ago and it has been very disabliing.
I lost my job my mobility , now walk permanantly on crutches and use a wheelcahir for some aprt of the day.
think long and hard about it as i still had dislocations aftewards.
Godd luck with the othere opinions.
Love h xxx
Posted by Leta_MT (Leta_MT), 17 October 2004

Reid,

Yeah on the patellectomy being off the table! Glad to hear that there is another opinion out there. Does he have a back up plan incase the cyst isn't what he thinks it is? Are you going to get another opinion in addition to this one? Couldn't hurt!

Good luck and hope it all turns out to be the best outcome possible, whatever the fix is!

Leta
Posted by mike_bknee (mike_bknee), 20 October 2004

If I were you, I would get a second opinion from Dr. Sim at Mayo Clinic.  I have seen him.  He is what is possibly the most world renown specialist in rebuilding the knee after cancer operations.  IMO he might just be the best person to see.
Posted by theartsinpain (theartsinpain), 20 October 2004

Thanks for all the feedback.....I had a meeting with my OS yesterday, and he passed me on to another top surgeon....he took my case to ten .....YES ten other surgeons in a meeting ...they all agreed that a patellectomy is out of the question!..WHOOHOOOO!!!!..they all fought over my case....nice to be wanted...but  it comes with a price...we'll see later this next month ..in the mean time I'm chewing on vicodin and trying to relax.... have some great music if anyone needs some relaxing music...really helps..
cheers.
Reid  
Posted by hmaxwell (Heather M.), 20 October 2004

Reid,

THANK GOD you got other opinions.  I really think patellectomy should absolutely be the last resort.  It seems from reading the post-op stories that amputees have a better time getting back to 'normal' life than patellectomy patients.

Frankly, I think amputees are more active and have higher quality of life than a lot of us dealing with chronic knee problems and debilitating pain!!  It's something I think about from time to time, but I know that the key is to just hang in there until I can have a total knee replacement.  Some days it's easier said than done.

Anyway, I'm really glad to hear you have specialists on your side working to preserve your knee.  Have you considered seeing a rheumatologist for the gout?  At least I think that's the specialty that deals with it...it's a rather rare condition, but I hear it's very painful.  Hopefully your knee can be cleaned out and your body WON'T form the crystals again.  I have a similar problem with scar tissue...too much of a good thing.  My body just doesn't know how to stop making it, and it's as traumatic in its own way as gout--or even a pedestrian vs. car incident.

Take care and keep us posted.

Heather
Posted by theartsinpain (theartsinpain), 20 October 2004

Heather,  I have been lucky to have access to good docs.  I have a rheumatologist she is great.. we have the gout thing pretty much under control..although if you damage/hurt a joint the uric acid loves to target that spot thus creating really painful episodes.  they think that the cyst might be a gigantic ball of uric acid crystals mixed with other good stuff...we'll find out in a few weeks.....the waiting is the hard part......I am SO glad I did not have the patella removed! after all the feedback as well as research......man!!!! what were they thinking! I think they will be doing a lateral relase and some bone grafting...and lord know what else.... hope all is well

Reid
Posted by MSW (MSW), 4 November 2004

Heather,

Reading your post reminds me of the thoughts I had about cutting off my own legs.  Besides the fact it would hurt probably more than my current pain I couldn't help but think....... with my luck, I would end up with Phantom Limb Syndrome.  So you see I would still be miserable.  This way I don't have to cut off my legs and I can remain miserable...hmm  that doesn't seem to sound good does it?  

Meanwhile, back in the real world........

I recently had my kneecap removed from one knee.  I'm still healing but I don't have the pain so I am happy.  I still have the same problem in my other knee but I wasn't willing to do both.  I need to see if this will make a big enough difference first.  This was a last resort surgery for me.  If I can become active again I will be in heaven.
Judy
Posted by maxfactor (maxfactor), 5 November 2004

I, too,  have thought about those amputees running and jumping. Much more than I can do. There's a guy on Survivor (television) that has a prostethis (sp) and a woman who has had TKR. They really baby the TKR woman. She's gotten out of a lot of the rough stuff. I asked a doc once if he had a corpse in the back that he could switch my legs with. He didn't think that was funny. I don't know that I was completely kidding.

Best to you,
Jane
Posted by Dodgyknees (Dodgyknees), 7 November 2004

Hello fellow patellectomy victims/patients.

I had the RH patella removed 13 years ago then the LH patella removed 8 years ago.
All has been sunshine and roses for many years and I have been able to remain active however there has been a marked deterioration in recent years and now I desperately need help!

Is there an OS in the world who specialises in treating post patellectomy patients??
Has there ever been a successful introduction of a artificial patella to a patient years after the patellectomy was performed?? Is such a procedure possible.
Has anybody benefitted from any alternative therapies to relieve the pain and discomfort?
Regards, J.
Posted by peaches (peaches), 19 January 2005

Can so identify.  I had both patellas removed 30 years ago because of dislocating patellas.  I was 22 years old and have not run since, and cannot do stairs normally.  I did fair for 30 years...but now I am rapidly getting worse.  Knees are getting weaker and weaker and much more pain.  I now walk much of the time with a cane and will very soon be in a wheelchair if I progress much further.  
I would also like to know the answers to your questions.  Did you get any replies?
All doctors I have seen have told me that I should not have had patellectomies, but now that they are done I just have to learn to live with them.  That if they did surgery there would be a good chance of making me worse...and at least I can walk now (sort of).

Posted by MSW (MSW), 19 January 2005

I just had mine done in October. It was a last resort surgery since I was in so much pain.  I decided not to have the underside resurfaced since that would then scrape against the knee joint and I would need a total knee replacement sooner.  Even with the kneecap out you can still have a total knee replacement should you need one.  Yes it may not be as good as having your own kneecap but maybe technology will be better then.

Since they had to cut the tendon I will lose 1 grade of flexsion/rotation.  If you work all the muscles around the knee or in the leg a lot - you will be able to get close to full range but never full range.  This to me is fine since I am no longer in pain.  A year from now who knows what I will be saying but for now it works for me.
Good Luck!
Posted by Helen_uk (Helen uk), 19 January 2005

mr derek bickerstaff is the man you want to see if you have had billateral patellectomies and are not happy he has sorted mine out for me although I have to say i still have a lot of pain and am hoping for a pkr soon.
Please feel free to ask away about this he works in sheffeid and london but only privatley now.
H xxx
Posted by bluetoffee (bluetoffee), 21 January 2005

on 10/12/04 at 00:23:56, theartsinpain wrote:

This old Forum was so valuable that we have kept it as an archive. It is just for reference. If you want to ask questions or offer advice, there is also a current Bulletin Board which you can access from our home page.

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