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Old 03-23-2003, 11:55 AM   #1
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crippledboy HB User
Question knee fusion / arthrodesis

Has anybody here undergone knee fusion surgery ? It was recommended to me and getting rid of the pain sounds to be too good to be real (psoriatic arthritis sufferer). How disabling is a knee fusion and how long takes recovery from a knee fusion surgery ? My knee fusion is scheduled for April and I want to be prepared.

 
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Old 03-28-2003, 02:24 AM   #2
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When you say knee fusion I'm assuming that means that your knee will no longer be able to bend. Am I correct?
I have psoriatic arthritis and I have a lot of joints that are involved (feet, knees, fingers, wrists, & elbows). My right wrist is so bad it fused on its own and I can longer bend it (my left is almost as bad). My knees are so bad that I cannot straighten them out.
What kind of arthritis do you have and how bad is it? How old are you if you don't mind me asking? I'm not a doctor so I cannot tell you if knee fusion is your best choice but I think I'd get a second opinion.

 
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Old 04-02-2003, 01:49 PM   #3
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Quote:
Originally posted by Dawnrise:
When you say knee fusion I'm assuming that means that your knee will no longer be able to bend. Am I correct?
I have psoriatic arthritis and I have a lot of joints that are involved (feet, knees, fingers, wrists, & elbows). My right wrist is so bad it fused on its own and I can longer bend it (my left is almost as bad). My knees are so bad that I cannot straighten them out.
What kind of arthritis do you have and how bad is it? How old are you if you don't mind me asking? I'm not a doctor so I cannot tell you if knee fusion is your best choice but I think I'd get a second opinion.

Yes, they recommended a surgical fusion of the right knee. I just turned 19 and was born with Juvenile Rheumatoid Arthritis but also suffer from some psoriatic arthritis, it was first thought to be only JRA until the skin became involved. Actually bot knees are bad but especially the right one. I have seen more than one doctor who says it may be the best to have now a fusion done on the right knee and to consider a knee replacement on the left knee later in life so this option will stay available in the future for the left knee and due to my a age doing a knee replacement on the right was said to be risky. To me this sounds like a reasonable plan. After a knee fusion the right knee would stop causing any trouble and the left could be treated with a replacement later.

 
Old 04-26-2003, 01:10 AM   #4
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Hello. Let me say I am sorry I have to write this letter to you. Not because it is you, but because of the reason you need to hear from me and me alone.
What you need right now is the honest down to earth TRUTH about what is going to happen to you with this fusion (arthrodesis).
I hope you have a lot of time because this is going to be a very long painful letter for me to write and you to read, so be ready. And I hope I am not to late, and you haven't done the surgery yet.
In an earlier life I was a Broadway dancer. And 25 years ago they knew nothing about protecting joints from running jumps and landing on your knees for 8 hours a day. I was also an avid horse backrider, but in English saddle, that is where you use you legs to post up and down with the horse. So my career choice coupled with horseback riding and waitressing put a lot of wear and tear on my poor knee.
Fast forward, it is now 1998 and I am 43, my knees are in constant pain and I am on pain medication now for 10 years. I move to Kentucky, I found a great doctor, young but talented a wonder-kin. He says my left knee is worse than my right knee and a TKR ( total knee replacement) was the best way to go. So we did. I had the surgery and got a major staf infection and was in the hospital for 6 weeks on IV antibiotics, the infection went away. It is now 2003 and I have no trouble with this knee I can even take the heel of my foot and touch my chin with this leg. The doctor was amazed, tells me "its not made to move like that." Took a photo wrote an article and got an award for something. Complete success. Yahoo great.
1999, we waited out that year for my left leg to get back all the strength, figured no problem that my right knee was gonna be the same cake walk my left knee was. NOT!!!!
Start 2000, January did my first (mind you) TKR in my right knee. Recovery fast and smooth. Walking with no walker in two weeks. At four weeks my knee turned blood red and very hot and I was running a 104 temp. Rushed to the hospital. I mean RUSHED! The infection was killing me. My body was shutting down. My knee was full of green goo that was staf infection and the TKR had to be removed right away. I'm put on a Morphine drip 3 mg of Morphine every 10 minutes for pain for two months. Another 6 weeks IV antibiotics in hospital and another surgery to put another TKR back in my knee before I go home.
Same thing happened again 2nd time in and out.
3 rd time- My birthday present on July 15th 2000 was TKR surgery to remove another infected TKR,
4th time-September 21st 2000 back in hospital for another TKR removal because of infection and another replaced.
5th time-December 3, 2000 another TKR removal only this time he didn't replace the joint.
So here we have 10 TKR surgeries. Now keep in mind every single time I had the new one put in after the antibiotics I did great for about a few weeks. I was walking with no trouble.
Wanna hear some real bad luck-
During on of the good spells I had gone t o the doctor two weeks after my release from the hospital. I was doing great. I was bending my leg, not using the walker, and generally showing off in the doctors office because I was so happy. When I got home in less than 20 minutes of walking in my front door I slipped and fell!!!! I broke any ankle in 3 places!!! My doctor and I had gotten very close, so close I knew the extension to the room he does surgery in and I called him there directly since the office was closed and he was not on call. They piped my call into the operation room and he talked with me, I was crying and told him "I just fell and I know I broke my ankle I heard it break." I know he stopped for a moment and I imagined him looking up at the speaker and shaking his head because he asked me "Catherine is this a Joke?" " You just left my office you were fine." I cried and said no it was true and what did he want me to do. I was sent an ambulance and directly admitted to the hospital and had surgery later that night. In two I was ready to go home but.......................the nurse looked at my knee and said my leg was hanging funny and called the doctor, I was taken down to x-ray. My doctor comes in at 5 am the morning I am going home as says:
" Sorry to tell you this but, you fractured you knee cap and we have to do surgery and fix it" Another two weeks in the hospital.

Now back to that awful day I made the choice with my doctor for the fusion. December 9th, 2000 : It is weeks before Christmas, I want to be at home and not in the hospital any more. I am depressed, the doctor is depressed. This is the first time this has ever happened to him, he can't explain why I keep getting the infection. (Explanation as to why coming sit tight)
Because of all the infections we have two choices 1) I go home with a cast on my leg from my hip to my ankle for 6 months with no knee inside while everything heals, thus leaving me bedridden and no way of doing anything for myself, or 2) have the fusion (arthrodesis) because there really isn't enough bone for another replacement anyhow. And if I go with choice 1 I could end up with choice 2 after several more painful months and end up with yet another infection. Desperately not wanting to put myself, my family or my doctor threw any more pain and emotional anguish I did the fusion.
BIGGEST MISTAKE IN MY ENTIRE LIFE!!!
What are the down sides?
1) You can no longer walk up stairs at all, let alone try to go down stairs. I have to got down stairs backwards, because I have to place the fused leg on the bottom step first.
2) If you are sexually active now forget it, put it out of your mind, your leg does not bend-need I say more
3) loss of height in one leg- I lost 1 1/2 inches - special shoes weighs so much and catch's on floor, promotes falling
4) standing for any length of time with out the shoe is painful because your spine is now in so much more pain your body feel like it is competing for attention- my spine is so twisted I now have sever migraines and have to get adjustments to my back 3 x aweek by a chiropractor
5) the bathroom- get yourself a raised toiletseat- it needs to be at least 4 inches higher than the normal toilet because you can't bend your leg to get you up- and those bars for the walls are a line of doggie duddie
6) call the "scooter store" and have Medicare pay for a scooter, you're gonna need it and make sure your doctor has the special lift on the side you have the fusion on - why because you leg doesn't bend and walking any distant longer that 50 feet will wear you out
7) get ahold of the community services program where you live and ask if the have a community ramp program, most communities provide free ramps for people that are on a limited income- you will need it for your scooter.
8) sell your car- you can't drive now because your leg doesn't fit, because it doesn't bend
9) don't bother trying to work- I am a person w/ a BA and can not get a job to save my life, because of my leg- I can't sit at a desk or regular chairs because my leg doesn't bend
10) give away all your dining chairs and living room furniture- they are to low to the ground and you can't get up, because you can't bend your leg

I am happy to say after two years of searching the internet and hundreds of dollars in long distant call to doctors and manufactures, I have come up with a list of doctors that do reversals of the fusion(arthrodesis). My surgery to get me back on both feet is in six weeks. Anyone that wants to feel free to write me I welcome your comments or questions.

 
Old 05-10-2003, 06:10 PM   #5
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Hello Catherine

Thank you for giving me some insight of your own situation. But I have to say that I had surgery April 10th and now I'm recovering and physical therapy to learn how to move and walk with the leg now. And "intramedullary nail" was used and so early weight bearing was possbile. I have to admit reading about your problems was a bit hard after my surgery but it seems and i hope that I won't have the same trouble...

 
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Lexis79 (07-07-2012)
Old 05-11-2003, 05:53 AM   #6
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Hi crippleboy,

My name is katie. I had a hard time reading about your knee problems. I have knee problems too, but I am not 19 years old. I am 45, and the onset to my knee problems only came on back in Oct. 2002, and I thought I had problems, until I read your story. It made me sad that you are so young. I wish you a speedy recovery from your surgery.
If you need to chat with someone, I am here.
Good Luck.

 
Old 05-17-2003, 06:12 PM   #7
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Dear Crippleboy,
Realy sorry you had to have the surgery. Like you the first few moths were fine. I was happy just to have a pain free leg. Then other side effects started happening; the migrain headaches, and awful backaches from the loss of height. But For you personally I hope all goes well. And you being a male lets put it really plain and honest, "Bedroom Olympics" is gonna be a real task. Just remember you were warned.
I can't get emotionaly adjusted and I am going to have a reversal done. I may very well turn out that I am indeed making the wrong choice, but i don't want to sit any longer and wonder what if. I hate this body I am hostage to. And I cannot live with anymore. So I am gonna have a surgery that could in all likelyhood fail. Of this fact I am well aware. It could go awfully bad and have to refuse the leg, but at least I tryed. It could work but I could be in pain the rest of my life. That my doctor says is the most likely. At this point my dear I will gladly trade pain for the bend again. And the best case is a complete sucess and I am happy.
I want to hear from anyone that wants to talk thanks, catherine =^..^=

[This message has been edited by moderator1 (edited 05-18-2003).]

 
Old 05-18-2003, 05:37 PM   #8
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Quote:
Originally posted by CatherineNoKnee:
Dear Crippleboy,
Realy sorry you had to have the surgery. Like you the first few moths were fine. I was happy just to have a pain free leg. Then other side effects started happening; the migrain headaches, and awful backaches from the loss of height. But For you personally I hope all goes well. And you being a male lets put it really plain and honest, "Bedroom Olympics" is gonna be a real task. Just remember you were warned.
I can't get emotionaly adjusted and I am going to have a reversal done. I may very well turn out that I am indeed making the wrong choice, but i don't want to sit any longer and wonder what if. I hate this body I am hostage to. And I cannot live with anymore. So I am gonna have a surgery that could in all likelyhood fail. Of this fact I am well aware. It could go awfully bad and have to refuse the leg, but at least I tryed. It could work but I could be in pain the rest of my life. That my doctor says is the most likely. At this point my dear I will gladly trade pain for the bend again. And the best case is a complete sucess and I am happy.
I want to hear from anyone that wants to talk thanks, catherine =^..^=

[This message has been edited by moderator1 (edited 05-18-2003).]
Hi Catherine

Everything Is a bit difficult now and reading about your trouble was not very encouraging but maybe I have more luck, I really pray. It seems you really were not able to get along with your leg after surgery ? Went everything wrong ? Can you tell more about the reversal ? My tragedy just was that both knees are bad and one really f*u* which was now fused to keep the option for a replacement for the other knee open in the future. By the way why was your message edited ?


 
Old 05-25-2003, 11:56 PM   #9
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HOPALONGky HB User
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Hi Crippledboy,
I hope you are doing better. That fusion thing is awful. I had my leg done and it is the biggest problem I ever have made. I am going to see a doctor in New York that does reversals. I'll let you know if it works.
stormy

 
Old 05-28-2003, 07:47 PM   #10
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Hi Crippleboy,
Sorry to hear about the surgery, hope it all works out. But let me know trew this line once reality sets in, which should be a few months from now. I'ld like to know how many of the 10 things I mentioned b4 you can do with no problem or what new problems you have had. Or if you live happy ever after I want to know also. Have you been to any other medical sites like this. There are quite a few. Just do like I did and do the searches under "KNEE ARTHRODESIS".
I got edited cuz I put in my email address, you know that darn small type we all don't read, came back and bit me in the zzz.
I hope r doing ok. Write soon.
catherine =^..^=

 
Old 05-31-2003, 03:03 PM   #11
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Hi Everyone, I just wanted to tell you I have been looking for a doctor to fix my knee back to bending again. I went to Ohio and that stupid doctor after a 4 hour drive wouldn't see me because he didn't take my insurance!!!
Well I found another doctor here in Kentucky, in Lexinton. I'll let you know how it goes.

 
Old 07-16-2003, 08:28 AM   #12
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Quote:
Originally posted by CatherineNoKnee:
Hi Everyone, I just wanted to tell you I have been looking for a doctor to fix my knee back to bending again. I went to Ohio and that stupid doctor after a 4 hour drive wouldn't see me because he didn't take my insurance!!!
Well I found another doctor here in Kentucky, in Lexinton. I'll let you know how it goes.
Hello CatherineNoKnee

How are you doing ? My recovery from surgery is okay, it seems that only after few months there is already a complete bony fusions, I guess they soon remove the harware still inside the knee.

 
Old 07-30-2003, 09:39 PM   #13
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FudPucker HB User
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Just happened onto this board tonight. So many stories are related.

3 years ago, I suffered a motorcycle accident in which my right knee was just about destroyed. The fact that the Emergency room left me on a cart for over 8 hours with an open fracture kinda sealed my fate.

20 operations later I was suppose to go in for a nail and fusion tomorrow. I canceled it. I have had multiple muscle-flaps donw across the knee area. I had a replacement in 2001, the osteomyelitis returned and subsequently lost the knee. Right know I have nothing there. Just Fib on top of the tib. Right leg is almost 2 inches shorter.

I'm wonder if you could possible email me this list of Drs. you have that do revisions and fusion reversals.
I was told because of my past Osteomyelitis I just wasn't a candidate for another knee. Fusion with a nail, or amputation were the only choices now.

Any insight is appreciated. I hope you are all doing well now.

Thanks....

Bill O'Neill (wco@elginet.com)

 
Old 08-01-2003, 07:48 PM   #14
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[This message has been edited by sanura (edited 08-10-2003).]

[This message has been edited by sanura (edited 09-01-2003).]

[This message has been edited by sanura (edited 09-01-2003).]

 
Old 09-18-2004, 03:47 PM   #15
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Re: knee fusion / arthrodesis

Good day CNK - I have read your posting about your knee fusion being reversed. I have had a knee fusion in 1994 and I will say it was one of the worst mistakes I made in my life. My Dr had indicated the fusion would be around for a few years until the cement for knee replacement was improved. He stated after that he would do a knee replacement. Well I am in my 10 th year with the fusion and frankly, I am going off my rocker with the combination of pain and inability to do what I want to do. My hips constantly hurt, my back is always sore, I canít sleep, my knee area still hurts, my opposite knew is painful and so on and so on.

I am interested in Drs who would reverse the surgery - more importantly their success rate.

 
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