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Offline agilitynutt

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Help?
« on: September 02, 2006, 02:34:36 AM »
Hi,

I posted on the RA board, but don't think too many people see it over there, so I thought I would repost here.  I am lost on where to go now with my knee...

Just to give you a little background on myself....  I am 35 years old and work as a professional dog trainer.  I own two jack russell terriers which I complete in dog agility with.  My life has been turned upside down during the last two years due to my knee. 

In April of 2004 I started having knee pain. Never had any type of injury that we are aware of.  September 2004 had a scope done, expecting to find a torn meniscus. Instead they found a 2.5cm hole in the bone and no cartlidge. The scope helped, but was told it was temporary. By March the pain was unbearable. The decision was made to perform an OATS procedure. I was told this was an attempt at avoiding a replacement. The OATS was done 6/05. I was NWB for 7 weeks and then probably another 3-4 PWB. Started PT at 7 weeks Post-op. Throughout my recoverery, my OS was very happy with progress... never concerned by my amount of pain.

Just kept telling me it shouldn't hurt and no one else has had problems with this procedure. I was in PT from Aug 1, 2005 thru April 1, 2006. During this time my PT was somewhat confused, the pain didn't seem to follow normal patterns, he couldn't get me releifde spite spending many, many extra hours with me. In Feb. I was having major back pain, when my PT couldn't help he insisted that I go see my GP. Blood work and xrays were done at that point. Xrays were clean of my back but bloods showed possible Auto-immune issues (positive ANA and RA). Was sent to Rhuematologist. At the same time I went to a new OS for a new opinion. He took TONS of xrays, many of which had never been taken before. His take of the knee was that alignment was great, normal joint space, graft appeared to be healing but his suspicion was that I had a medial meniscus tear (I have heard that one before). He wanted to wait a bit longer since I had just had a 2nd scope in December to check the graft, he suggested waiting until June to repeat MRI and proceed from there. OK, fine I didn't want anyone else cutting my knee at that point anyhow. In June he repeated the mri using contrast, once again something the previous OS never did. He could not find anything wrong in the knee, the graft was healing nicely and no sign of meniscus tear. Good news, Right?? No one is able to determine why I can't put weight on my knee at some point DAILY.

During this time I was seeing a local Rhuematologist. I had heard possible dx of Ankylosing Spondylitis, Rhuematoid Arthritis, and
Lupus. After getting no where yet again, I went for a second Rhuematology opinion. This time with one of the top guys around.
After looking at my bloodwork and history he told me I certainly have something auto-immune going on, but can't put a name on it yet. With some testing he was able to determine it was NOT Ankylosing Spondylitis. He is fairly certain I have the early stages of
Rheumatoid Arthritis, but has not ruled out other possiblities. He has been trying to control the pain, has tried Prednisone, tapered me off that and had to up Celebrex to 800mg a day to take the edge off the pain (no major releif, rather allowed me to limp around at work) Just last week he tried steroid in the joint, suggested maybe Synvisc injections, wants to refer me to a OS for a second opinion, and made a comment I am really concerned about..... He said I may need a knee replacement. I got very quiet.... He asked if anyone has ever mentioned that, NO, if fact I had gotten the impression from my OS that it really wasn't an option since everything is normal in the knee. The current OS is my second opinion. Both OS have told me pretty much the same, the 2nd with xrays and mri to back him up... there is nothing they can do surgically to help the knee. In fact the second guy thought it was very possible that this is early Rhuematoid Arthritis.

There is not a day where my pain level stays below 4/5 for more than a few hours.  Often much higher.  I am taking 400 mg of Celebrex every morning with an additional 400 mg at night if bad pain.  I also am taking Tramadol for pain.  Most of my pain is weight bearing pain.  If I can stay off the knee it feels pretty good at least until I stand up     I have never had a brace or anytype of support for my knee, don't know if it would help.   I very much would like to return to a somewhat active lifestyle.  At this point, I often cannot walk my dog around the block (less than 1/2 mile),  I would like to get back on my mountain bike, and in general lead the life of a normal 35 year old. 

Any help or advice would be greatly appreciated!

Nichole
 
 

Offline luckygrandma

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Re: Help?
« Reply #1 on: September 02, 2006, 02:43:37 PM »
e I feel s o bad for you, especially at your age. +
Hi,

I posted on the RA board, but don't think too many people see it over there, so I thought I would repost here.  I am lost on where to go now with my knee...

Just to give you a little background on myself....  I am 35 years old and work as a professional dog trainer.  I own two jack russell terriers which I complete in dog agility with.  My life has been turned upside down during the last two years due to my knee. 

In April of 2004 I started having knee pain. Never had any type of injury that we are aware of.  September 2004 had a scope done, expecting to find a torn meniscus. Instead they found a 2.5cm hole in the bone and no cartlidge. The scope helped, but was told it was temporary. By March the pain was unbearable. The decision was made to perform an OATS procedure. I was told this was an attempt at avoiding a replacement. The OATS was done 6/05. I was NWB for 7 weeks and then probably another 3-4 PWB. Started PT at 7 weeks Post-op. Throughout my recoverery, my OS was very happy with progress... never concerned by my amount of pain.

Just kept telling me it shouldn't hurt and no one else has had problems with this procedure. I was in PT from Aug 1, 2005 thru April 1, 2006. During this time my PT was somewhat confused, the pain didn't seem to follow normal patterns, he couldn't get me releifde spite spending many, many extra hours with me. In Feb. I was having major back pain, when my PT couldn't help he insisted that I go see my GP. Blood work and xrays were done at that point. Xrays were clean of my back but bloods showed possible Auto-immune issues (positive ANA and RA). Was sent to Rhuematologist. At the same time I went to a new OS for a new opinion. He took TONS of xrays, many of which had never been taken before. His take of the knee was that alignment was great, normal joint space, graft appeared to be healing but his suspicion was that I had a medial meniscus tear (I have heard that one before). He wanted to wait a bit longer since I had just had a 2nd scope in December to check the graft, he suggested waiting until June to repeat MRI and proceed from there. OK, fine I didn't want anyone else cutting my knee at that point anyhow. In June he repeated the mri using contrast, once again something the previous OS never did. He could not find anything wrong in the knee, the graft was healing nicely and no sign of meniscus tear. Good news, Right?? No one is able to determine why I can't put weight on my knee at some point DAILY.

During this time I was seeing a local Rhuematologist. I had heard possible dx of Ankylosing Spondylitis, Rhuematoid Arthritis, and
Lupus. After getting no where yet again, I went for a second Rhuematology opinion. This time with one of the top guys around.
After looking at my bloodwork and history he told me I certainly have something auto-immune going on, but can't put a name on it yet. With some testing he was able to determine it was NOT Ankylosing Spondylitis. He is fairly certain I have the early stages of
Rheumatoid Arthritis, but has not ruled out other possiblities. He has been trying to control the pain, has tried Prednisone, tapered me off that and had to up Celebrex to 800mg a day to take the edge off the pain (no major releif, rather allowed me to limp around at work) Just last week he tried steroid in the joint, suggested maybe Synvisc injections, wants to refer me to a OS for a second opinion, and made a comment I am really concerned about..... He said I may need a knee replacement. I got very quiet.... He asked if anyone has ever mentioned that, NO, if fact I had gotten the impression from my OS that it really wasn't an option since everything is normal in the knee. The current OS is my second opinion. Both OS have told me pretty much the same, the 2nd with xrays and mri to back him up... there is nothing they can do surgically to help the knee. In fact the second guy thought it was very possible that this is early Rhuematoid Arthritis.

There is not a day where my pain level stays below 4/5 for more than a few hours.  Often much higher.  I am taking 400 mg of Celebrex every morning with an additional 400 mg at night if bad pain.  I also am taking Tramadol for pain.  Most of my pain is weight bearing pain.  If I can stay off the knee it feels pretty good at least until I stand up     I have never had a brace or anytype of support for my knee, don't know if it would help.   I very much would like to return to a somewhat active lifestyle.  At this point, I often cannot walk my dog around the block (less than 1/2 mile),  I would like to get back on my mountain bike, and in general lead the life of a normal 35 year old. 

Any help or advice would be greatly appreciated!

Nichole
 
 

Nichole I feel so bad for you especially at your age, but I tend to agree with the the second Rhumatologist opinion about the TKR. You are young for this but if you read many of the boards you will find that there are teenages and people in their 20's getting this dome. The only drawback is within 10-15 years you will probably need another one due to your age and active lifestyle. It is worth it for the years of your life that are saved free of pain. . I've heard of people recovering from TKR in three months. I am on my 8th month now and still recovering due to previous surgeries. Every time you have surgery done, whether it be a scope or something else scar tissue builds and the pain is more intensive. Good luck to you and let us know what you find out.
« Last Edit: September 03, 2006, 03:34:01 AM by luckygrandma »

Offline Jules

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Re: Help?
« Reply #2 on: September 02, 2006, 05:10:40 PM »
Nichole,
Have you osteoarthritis as well as Rhuematoid Arthritis?
I had similar situation, I had ACI (autologous condrocyte implantation) in November 2004, I was NWB for 6 weeks and PWB for 2 weeks, from the time I could fully weight bear, it went down hill, I never had any improvement and it just got extremely painful with every step I took. Although I did have three lesions around 2.5cm each. I ended up with knees giving way all the time and had to use a wheelchair.
I was told I was too young for a TKR, I am 40 years old, but after lots of tears and fighting for my quality of life, I had my TKR in May this year, and it was the best thing I have ever done. I am almost totally pain free, have the occasional pain if I do too much. I was told my knee would last 15-20 if I was careful with the milage I did on my new knee.
My left knee was just as bad, but the lesions were isolated to the femoral joint, so 18 days ago I had a patella femoral joint relplacement and realignment of the patella (partial replacement), its still early days, and I do have my concerns about the success and out come of this, but only time will tell, I just hope it will be as good as my TKR.
Best wishes and I really do hope you get sorted out and soon.
Jules
Apr 01 - bi-lat debride
Dec 01 - bi-lat mircrofracture & LR
Nov 02 - bi-lat debride & LR
Oct 04 - bi-lat A'scopy & harvest
Nov 04 - R ACI
June 05 - R A'scopy/shave
May 06 - R TKR
Aug 06 - L  PFJR
Jan 07 - L open LR
Oct 08 - L open LR
Feb 09 - L A'scopy/shave
July 09 - L TKR......
20 ops in 13 years

Offline emphatic

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Re: Help?
« Reply #3 on: September 03, 2006, 02:04:09 AM »
My advice if anyone offers you a PKR tell them you would rather have a TKR. Most partials fail and have to be replaced with a TKR and so you face a second surgery and a revision of taking out the old prothesis makes your rehabilitaiton much longer.

Becky,

I've read a fair number of your posts and it's obvious that you've been through a long, tough ordeal. However, statements such as above (the underline is mine) -- while they may be a part of your experience -- are not fact, and contribute to a distressing amount of misinformation on this board.

I realize that your purpose is to keep people from having to go through the same things that happened to you. That's wonderful and I applaud your efforts.

The problem occurs when the other person's case is not identical to yours, and may not even match your medical situation. Statements such as above may even wrongly bias someone against a very worthwhile treatment option for them -- perhaps an option that wasn't viable for you.

It is not at all correct that most partial knee replacements fail. A unicompartmental knee replacement is an excellent treatment option for many people. It is true that not every surgeon offers this option -- often because it takes additional training to learn the technique and it is a little more difficult. Those who do offer it and have chosen to excel at the technique have very satisfied patients who've had excellent outcomes. Appropriate patient selection is also an extremely important contributing factor.

Whether a surgeon offers a treatment or speaks against it, sadly, can come from their ability or inability to offer it themselves. This is most often seen with articular cartilage resurfacing options and joint replacement options. It's bad enough that patients have to deal with that, and may not find out every possible option for them. It's worse if a lay person adds additional bias against possibilities based solely on their own personal experience.

I hope this doesn't offend you -- it certainly isn't meant in that way at all. I'm just hoping that you'll be extra cautious when posting so as to not make such statements. I know you wouldn't want someone to possibly lose out on a treatment option that could really help them... even if it didn't help you.

Meg

Offline emphatic

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Re: Help?
« Reply #4 on: September 03, 2006, 02:23:27 AM »
Nichole,

You're in a tough spot, because you have potentially two things going on, and neither are clear. It sounds like you have a structural issue (the articular cartilage lesion -- hopefully filled in with grafts), and an auto-immune problem. The hardest thing to deal with right now might be the wide range of treatment options given to you, and trying to evaluate each of them. It's harder when different doctors offer different options.

I do think you'd be well served to try to tackle the problem from both angles -- continuing to try to make sure the articular cartilage problems really are solved and there's nothing else going on structurally, and trying to get to the bottom of the auto-immune issue.

Joint replacements are offered to RA patients, but only after the RA is confirmed, along with the significant joint damage. At this point, it doesn't sound like they're finding the joint damage necessary for a joint replacement? The weight-bearing-only pain is worth exploring. It could be possible that, while the graft looks nice, it might not be functioning "nice." Do you know if there's a top articular cartilage resurfacing doc in your area? With your age and activity level, it made me wonder why you weren't offered ACI, especially for that size lesion. My first guess would be that your doctor doesn't perform it. If that's the case, it might be a good idea to look for the best articular cartilage doc around -- or the closest one you can travel to. I didn't look to see if you listed a location on your profile. If you post where you are, someone might be able to give you the name of a good doctor.

I was also wondering if you'd explored the possibility of a nerve problem? Unusual pain patterns can be indicative of a neurological issue. It could be worth looking into that.

In the meantime, there's no reason to suffer in pain. A good pain management specialist could help you a lot. If you had your pain more in control, you might have more strength for fighting through all the medical appointments and such.

Good luck with all this... I do hope you find your way through it.

Meg

Offline luckygrandma

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Re: Help?
« Reply #5 on: September 03, 2006, 03:18:11 AM »
My advice if anyone offers you a PKR tell them you would rather have a TKR. Most partials fail and have to be replaced with a TKR and so you face a second surgery and a revision of taking out the old prothesis makes your rehabilitaiton much longer.

Becky,

I've read a fair number of your posts and it's obvious that you've been through a long, tough ordeal. However, statements such as above (the underline is mine) -- while they may be a part of your experience -- are not fact, and contribute to a distressing amount of misinformation on this board.

I realize that your purpose is to keep people from having to go through the same things that happened to you. That's wonderful and I applaud your efforts.

The problem occurs when the other person's case is not identical to yours, and may not even match your medical situation. Statements such as above may even wrongly bias someone against a very worthwhile treatment option for them -- perhaps an option that wasn't viable for you.

It is not at all correct that most partial knee replacements fail. A unicompartmental knee replacement is an excellent treatment option for many people. It is true that not every surgeon offers this option -- often because it takes additional training to learn the technique and it is a little more difficult. Those who do offer it and have chosen to excel at the technique have very satisfied patients who've had excellent outcomes. Appropriate patient selection is also an extremely important contributing factor.

Whether a surgeon offers a treatment or speaks against it, sadly, can come from their ability or inability to offer it themselves. This is most often seen with articular cartilage resurfacing options and joint replacement options. It's bad enough that patients have to deal with that, and may not find out every possible option for them. It's worse if a lay person adds additional bias against possibilities based solely on their own personal experience.

I hope this doesn't offend you -- it certainly isn't meant in that way at all. I'm just hoping that you'll be extra cautious when posting so as to not make such statements. I know you wouldn't want someone to possibly lose out on a treatment option that could really help them... even if it didn't help you.

Meg
Meg I did not say this lghtly. I've done much research on this subject and the failed partials far outweight the successes. I went to a new doctor from the one who did the partial and he is in the top 10% of sugeons in the country and before he started his practice here he worked on all the famous athletes in Los Angeles such as the Lakers, Dodgers etc. He is also the Orthopedic Surgeon for Colgate College which is a famous college here. My new surgeon said he does not believe in partials and that I was a guiney pig. He said my case was a perfect example. He said that many of these doctors take classes in these new techniques and then try to find a market for it. I stand on what I said as that is what I believe, not only based on my experiences but reading about what many others have had to say about it and research into the subject. What do you base your knowledge on. A partial is a temporaruy fix and it is certain it willl end up in  a total. If I knew then what I know now I never would have agreed to this. You are entitile to your opinion and I'm entitled to mine, that is what these boards are all about. If we all agreed it would be pretty dull. Anyone has a choice to believe what they want. I cannot believe anyone would refuse a partial based on anything I have said if it came down to it and the surgeon gave them a good reason for it. Yes! I think your posts was harsh and cruel over one statement you didn't agree with. Many others here give much stronger statements about things and seem to get away with it. Why is that.

knee deep in Goo

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Re: Help?
« Reply #6 on: September 03, 2006, 03:53:40 AM »

Fail is maybe is not the right word.

The selling point for a PKR is -  Its a  Bandaid that will last 10-15  years before another surgical procedure is needed. 
You will find nay sayers that they fail faster.  But perhaps the patient was not properly assessed.

If you have OA in more than one compartment.  A partial may not be for you.  If you are over 200 pounds a Partial may not be right for you.  My strong suggestion is to google like mad and research the pro's and con's   Read the posts of people who have experienced a partial  Try to find someone who has it over two years.   Perhaps you may see a poster who has had one .. but has not come to this board for awhile. Try to send them a Private message.   

Ask your doctor if he can put you in contact with one of his personal patients that have had one over 2 years.


Just remember doing a knee replacement is not all rosey...   Maybe ACI may not be as rosey for you.. either.. if it fails and you are back at square one.. but you know .. You must read all things you can .. if you want to feel you are making and educated confident health decision.     


What has worked for some may not work for all. 


Rheumy puts you in another area of risk for a  knee replacment.

knee deep in Goo

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Re: Help?
« Reply #7 on: September 03, 2006, 03:56:00 AM »
Plus if you have joint space...   Perhaps a different type of Avian product may help you.. Maybe one with a higher density.. Like orthovisc

Offline agilitynutt

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Re: Help?
« Reply #8 on: September 03, 2006, 04:27:46 AM »
Nichole,


Joint replacements are offered to RA patients, but only after the RA is confirmed, along with the significant joint damage. At this point, it doesn't sound like they're finding the joint damage necessary for a joint replacement?

Meg,

Its true that the xrays are not showing joint damage necessary for a replacement.  However I did get my records from the 2nd opinion doc that I went to and in his mri report, he states that there is some mild-to-moderate irregularity along the articular cartilage adjacent to the graft.  Makes me wonder if that might be part of the pain I am feeling.  He goes onto say in his report that recommends waiting a year from the last surgical procedure before considering other treatment modalities.  This actually makes me feel better.  He is not sending me on without helping, but rather as I know there is still healing happening in the knee, I would rather he not cut anymore if it is just a matter of healing.
Do you know if there's a top articular cartilage resurfacing doc in your area? With your age and activity level, it made me wonder why you weren't offered ACI, especially for that size lesion. My first guess would be that your doctor doesn't perform it. If that's the case, it might be a good idea to look for the best articular cartilage doc around -- or the closest one you can travel to. I didn't look to see if you listed a location on your profile. If you post where you are, someone might be able to give you the name of a good doctor.


While I REALLY like the guy I went to for the 2nd opinion, how do I know how he rates as a articular cartilage doc?   I live in Southern California.  The doc I like is from Southern California Orthopedic Institute.  Like I said I really like him, and as I am finding out my previous doc probably wasn't at the level I need for my knee.

Any advice would be appreciated!

Thanks,

Nichole

Offline Jaci

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Re: Help?
« Reply #9 on: September 03, 2006, 06:52:02 PM »
Hello, Nichole,

You might want to do some research on Bert Mandelbaum, he's in Santa Monica. He is well-known for his work with cartilage restoration, autologous chondrocyte implantation (ACI) in particular. I only know about him from what I've read, and unfortunately what I read was some time ago so I can't give you any details. 

As far as finding out about how your current OS rates with regard to cartilage restoration: I wonder if there is an organization or association of cartilage restoration physicians? I'm really just 'thinking out loud' here, but you may want to do some Google searches to see if such an association exists. Someone on one of the cartilage restoration boards in the 'arthritis section' of KNEEgeeks might be able to help you with this. Or maybe check on the American Association of Orthopedic Surgeons (AAOS) website. Or even Orthosupersite.

If So. Cal Orthopedic Institute has a website, check their physician info section to see if they have profiles on their doctors. Sometimes the profiles will include 'special interests' or 'sub-specialties'. Although a mention of cartilage restoration as an area of interest or sub-specialty doesn't guarantee quality, at least you know that the doctor has some interest in the area.

Last, you could search for medical journal articles on PubMed and see if your current OS has written or co-written anything on the subject. Again, doesn't guarantee quality, but may indicate that he has more than just a passing interest in cartilage restoration.

Best wishes,

Jaci

« Last Edit: September 03, 2006, 07:08:07 PM by Jaci »
10/03 Twist injury
12/03 Menisectomy- tears ACL, MCL, & LCL missed by OS
Arthrofibrosis ROM 38-68
3/04- 4/08 Multiple scar tissue procedures:
6 scopes w/LOA, AIR, LR, chondroplasty, synovectomy, bone spur & plica removal
3 insufflations, many injections
Chronic AF, patella infera, IPCS

Offline stgiles16

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Re: Help?
« Reply #10 on: September 04, 2006, 12:20:00 AM »
Becky, If you really want to get technical, a PKR may last 10-15 yrs and then you can have a TKR. A TKR may last 10-15 yrs and then you must have a revision BUT you can only do so many revisions. You lose too much bone mass during each revision. A PKR is a viable solution for some people. It is not a good idea to so strongly tell people to run the other way. We are not doctors and we cant diagnos each other over the internet, we can offer suggestions but you should not tell EVERYONE that PKRs are a bad idea for them because you just dont know that. It DOES work for some people. I realize that it did not work for you but that does not mean that it is a horrible option for everyone else.
I'm sorry but I dont think that meg is trying to be cruel. She is pretty much saying the same thing that I am, only a little less delicately. I try to be diplomatic if at all possible.

If you are basing your statement that all PKRs fail because they only last 15 years then by the same token, all TKRs fail because they must have  a revision at some point. You said yourself that you are facing a revision of your hip replacement in the not too distant future, does that mean that it was a failure? Do you see what we are trying to get across to you? I hope that your TKR lasts for at least 20 yrs, just as I hope that my PKR lasts that long. I only have damage in one compartment and was too young for the TKR so I went with the PKR. It was a last resort for me. Iknow that I will face a TKR in the future but am hoping to put it off for as long as possible.
best wishes
missy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
Fibromyalgia
Arthrofibrosis
LOA & PKR 2/15/06
RA
in pain mgmt
TKR JAN 2012

knee deep in Goo

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Re: Help?
« Reply #11 on: September 04, 2006, 12:33:05 AM »
Actually my doctor has stated  that my TKR would last  20-30 year range.   The cement normally fails first.

Offline stgiles16

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Re: Help?
« Reply #12 on: September 04, 2006, 01:50:36 AM »
Goo, I have never heard of one lasting for 30 years, that would be AWESOME.  I hope that when I finally have to have mine, they will be so sophisticated that they last that long or longer. I hope that your OS is right and that your TKR does last that long.
good luck
missy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
Fibromyalgia
Arthrofibrosis
LOA & PKR 2/15/06
RA
in pain mgmt
TKR JAN 2012

Offline *Tiffany

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Re: Help?
« Reply #13 on: September 04, 2006, 01:54:12 AM »
Hey everyone,

Just jumping into this conversation, not having read all the posts, but. 

My os said to expect 20-30 years from the normal TKR.  there is one he follows that has been in for 48 years.  I didn't even know they were available 48 years ago!

Good Luck
Tiffany
Age 8/Bilateral -Lateral Release '85
Bilateral Patella Resurfacing '86
Bilateral TTT '88
Bilateral- Lateral Release '03.     
Bilateral PFJR '05
PRJ to TKR 1/16/07
PRJ to TKR 6/19/07
TKR Revision  8/17/10
Total Hip Replacement 11/5/15
Rt Elbow Reconstruction 4/27/1
Patellectomy 2/2020

knee deep in Goo

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Re: Help?
« Reply #14 on: September 04, 2006, 02:15:31 AM »
Actually my next door neighbor worked for styker and she said it is possible for a  50 year knee.  They just go on the conservative side.  If you read. you will find all history of knee replacements.  Its interesting to google.