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wanttoride
senior
United StatesHey Jo! Does your knew profile pic signify your shoulder is better?
Fusion Long ride to a successful Fusion
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Josephine
NURSE DIRECTOR EMERITA
Yep! Read here
I saw the PT today and much to the amazement of us both, was able to slowly lift my arm up until it was totally vertical, right over my head! Her exact reaction was "Flippin heck, Jo!"!
All other movements were much better than she had expected (she said) and when I voice my concerns about still being at risk of a frozen shoulder, she assured me that was never likely as I could always reach my hand up behind my back. Apparently that is the first movement to go. I am greatly relieved!
awolfpaw
junior member
Hello Hello Hello
Im completely new here, joined only hours ago, but I needed to reply here. I read a lot of this thread (not all of it, I will admit) and must reply.
Im 25 years old and have a fused knee for 4 years now. That picture josephine posted on page 2 of this thread is the procedure I had, actually. I have wonderfully horrible pics if you wanna see ;) I was an unusual case though, since I was only 20 at the time and the knee was very VERY infected, so TKR was not an option.
Before my surgery, my pain was excruciating. I kept a pain diary and on some days, i just sat around rubbing my knee in hopes to make it stop hurting. I did not go out that often due to pain and the fact that I was on crutches for years to relieve some pain. I was on so many pain meds that I couldnt drive and was usually tired. I lived this way 2 years while I waited for my knee infection to clear up, and I lost a lot of time.
I had the surgery, and at first it was awwwful pain (which Im sure you understand since you have also had knee surgeries in the past). Some of the worst pain I have ever had, and Ive done a lot of precedures and surgery. But, once the pain of the surgery subsided about a week later...it really is amazing the difference. The pain in virtually not there after a while. I got off pain meds, went to college, and now am about to start a career in an occupation I had dreamed of doing since I was 10. Like damaso77 has said, it doesnt bother me and half of the time, people dont notice. In fact, people who do notice my limp normally ask whats wrong with my ankle. haha! I do have a small limp (as the fusion has left my left leg about an inch shorter than the other), but I walk everywhere and anywhere I want, drive, where most high heels, and go to the gym about 2 times a week.
Life wont be perfect.You will need to relearn alot. I have mastered going upstairs 1 stair at a time, but need to double step on the way down. I miss riding a bike (if anyone has any hints, I would LOVE them!). The biggest issue I have encountered is having difficulty sitting in stadium and some theater seats. There is so little space in front of you, you have to sit half sideways. Just hope you know the person sitting next to you because you may end up playing footsie! haha!
In all, having a knee fusion is DEFINITELY not the end of your living. With a little perseverance, you will find a way to do whatever you want. Life is actually better now without the life-stopping pain. Its a challenge, but not devastating. This winter, I relearned how to ice skate!
If you dont mind me asking, since I am new, have you considered going to Boston? I went to several hospitals that just looked at me funny before ending up at Childrens/Brigham and Womens, where I was introduced to this way to save my whole life. At one point before them, I even considered just removing the whole leg above my knee. But they foudn another way. They are amazing there and it may benefit you if you have not yet been there.
Hope everything goes well either way
Im completely new here, joined only hours ago, but I needed to reply here. I read a lot of this thread (not all of it, I will admit) and must reply.
Im 25 years old and have a fused knee for 4 years now. That picture josephine posted on page 2 of this thread is the procedure I had, actually. I have wonderfully horrible pics if you wanna see ;) I was an unusual case though, since I was only 20 at the time and the knee was very VERY infected, so TKR was not an option.
Before my surgery, my pain was excruciating. I kept a pain diary and on some days, i just sat around rubbing my knee in hopes to make it stop hurting. I did not go out that often due to pain and the fact that I was on crutches for years to relieve some pain. I was on so many pain meds that I couldnt drive and was usually tired. I lived this way 2 years while I waited for my knee infection to clear up, and I lost a lot of time.
I had the surgery, and at first it was awwwful pain (which Im sure you understand since you have also had knee surgeries in the past). Some of the worst pain I have ever had, and Ive done a lot of precedures and surgery. But, once the pain of the surgery subsided about a week later...it really is amazing the difference. The pain in virtually not there after a while. I got off pain meds, went to college, and now am about to start a career in an occupation I had dreamed of doing since I was 10. Like damaso77 has said, it doesnt bother me and half of the time, people dont notice. In fact, people who do notice my limp normally ask whats wrong with my ankle. haha! I do have a small limp (as the fusion has left my left leg about an inch shorter than the other), but I walk everywhere and anywhere I want, drive, where most high heels, and go to the gym about 2 times a week.
Life wont be perfect.You will need to relearn alot. I have mastered going upstairs 1 stair at a time, but need to double step on the way down. I miss riding a bike (if anyone has any hints, I would LOVE them!). The biggest issue I have encountered is having difficulty sitting in stadium and some theater seats. There is so little space in front of you, you have to sit half sideways. Just hope you know the person sitting next to you because you may end up playing footsie! haha!
In all, having a knee fusion is DEFINITELY not the end of your living. With a little perseverance, you will find a way to do whatever you want. Life is actually better now without the life-stopping pain. Its a challenge, but not devastating. This winter, I relearned how to ice skate!
If you dont mind me asking, since I am new, have you considered going to Boston? I went to several hospitals that just looked at me funny before ending up at Childrens/Brigham and Womens, where I was introduced to this way to save my whole life. At one point before them, I even considered just removing the whole leg above my knee. But they foudn another way. They are amazing there and it may benefit you if you have not yet been there.
Hope everything goes well either way
Welcome to BoneSmart, awolfpaw! How good of you to post your experience!!! I'm sure wanttoride will appreciate it as well.
You sound like a wonderfully positive and determined lady who has a lot to look forward to in life. God bless you for not giving up until you found the right doctors to help you.
If I may ask, were you able to determine the origin of the infection?
You sound like a wonderfully positive and determined lady who has a lot to look forward to in life. God bless you for not giving up until you found the right doctors to help you.
If I may ask, were you able to determine the origin of the infection?
Hi there!
Nice to meet you here! I am 37, male and have a knee fusion too. I feel so happy with it, but as Josephine knows I am a special case :wink1:
Do you use a stick for longer distances? I use a stick for longer walks. And I had a long rod, my x-rays are shown in this thread.
hugs
Malte
Nice to meet you here! I am 37, male and have a knee fusion too. I feel so happy with it, but as Josephine knows I am a special case :wink1:
Do you use a stick for longer distances? I use a stick for longer walks. And I had a long rod, my x-rays are shown in this thread.
hugs
Malte
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wanttoride
senior
OMG! Thank you, thank you, THANK YOU!!!! I'm sooo glad you joined BoneSmart and saw my thread. You are the sunshine I have been looking for!!! 
If I could dance right now, I would be!
I also asked my surgeon if amputation above the knee was an option. He really didn't want to do something that drastic, and told me I would probably be worse off.
I've been spending my past couple of days out of the cast...it's been sooo hot here! I can see a HUGE difference when I'm not wearing it, and my knee bends. A LOT of pain, and I can hardly walk. However, if I keep my leg straight and pretend it's in the cast, then it's ok...not painfree, but ok. We got a new dog (a 2 year old Pomeranian..that makes a total of 4!) yesterday, and I took him for a walk to the next driveway last night, in the cast. I really can do sooo much more when I'm in it.
I'm currently on social security disability and don't work, thanks to the knee and the RSD/CRPS issues. Do you think it might be possible to return to work if/after I have the fusion? Did you have to be in a cast until the fusion healed? Tell me more!!!! :ThankYou:
If I could dance right now, I would be! I also asked my surgeon if amputation above the knee was an option. He really didn't want to do something that drastic, and told me I would probably be worse off.
I've been spending my past couple of days out of the cast...it's been sooo hot here! I can see a HUGE difference when I'm not wearing it, and my knee bends. A LOT of pain, and I can hardly walk. However, if I keep my leg straight and pretend it's in the cast, then it's ok...not painfree, but ok. We got a new dog (a 2 year old Pomeranian..that makes a total of 4!) yesterday, and I took him for a walk to the next driveway last night, in the cast. I really can do sooo much more when I'm in it.
I'm currently on social security disability and don't work, thanks to the knee and the RSD/CRPS issues. Do you think it might be possible to return to work if/after I have the fusion? Did you have to be in a cast until the fusion healed? Tell me more!!!! :ThankYou:
Josephine
NURSE DIRECTOR EMERITA
If you have the intramedullary rod, then most you will need is a period of rest and recuperation, much like a (normal!) TKR. If they do a bone graft or osteotomy type fusion, they will use something like the Ilizarov frame and some weight bearing will be possible. The frame is better than a plaster cast as they can get the bones more accurately and firmly aligned and know they are going to stay that way. A cast doesn't do that.
And of course you will be able to work! I've worked with a nurse and a porter in hospital who managed to do their jobs just fine.
And of course you will be able to work! I've worked with a nurse and a porter in hospital who managed to do their jobs just fine.
awolfpaw
junior member
Thats my leg! well, it WAS what my leg looked like. Because of an infection that was never identified they couldnt open up the leg and in a rod (we took every type of sample multiple times, but it was unable to figure out what infection it was. It was definitly an infection though, since it was red, warm, the size of a grape fruit, and oozing pus out the front). this is also why I didnt have a TKR.
I can only speak from what I had (which is not the normal way, usually a fusion is done with the rod), but unless you were a pro-basketball player before, I cant find ANY reason you wouldnt be able to work! haha. The challenge you will face with a knee fusion will be relearning how to do things, but you CAN relearn. Starting with sitting in a chair to walking to almost anything, even with a knee fusion you can find a way to do it. Like I said before, I used to love to ice skate, so this past winter I made it my mission to relearn how to skate...and did it! I honestly barely notice my fusion most of the time.
I did not have any cast because of the large ring-thing, so I dont know about any of that kind of down time. However, once you get past that "post surgery hurdle" so to speak, its really amazing finding out how much drive you have and seeing what you are able to accomplish. every little thing you relearn to do makes you feel so strong. Life is a little bit more refreshing because you tend to celebrate the little things, like be able to play frisbee again! haha.
My advice is to not act like a patient. Ive done years a medical stuff and what always got me through was being "ashley with a leg injury" or "ashley with cancer"....not "disabled ashley" or "cancer patient ashley". By doing as much as you possibly can every day to keep things "normal" makes it easier to recoop when things begin going up hill. It sounds like you are doing this though by doing things like walking your dogs
I dont know if you have done this, but I would practice with a straight leg. My mom and I put our legs in braces so they were straight (well, the doctor fussed the leg with a 15 degree angle. When you go for your second opinion, I would ask if they plan on doing something similar). Then we did things like sat in chairs, got in and out of a car, got up and down from the toilet. It was quite an adventure! haha!
I can only speak from what I had (which is not the normal way, usually a fusion is done with the rod), but unless you were a pro-basketball player before, I cant find ANY reason you wouldnt be able to work! haha. The challenge you will face with a knee fusion will be relearning how to do things, but you CAN relearn. Starting with sitting in a chair to walking to almost anything, even with a knee fusion you can find a way to do it. Like I said before, I used to love to ice skate, so this past winter I made it my mission to relearn how to skate...and did it! I honestly barely notice my fusion most of the time.
I did not have any cast because of the large ring-thing, so I dont know about any of that kind of down time. However, once you get past that "post surgery hurdle" so to speak, its really amazing finding out how much drive you have and seeing what you are able to accomplish. every little thing you relearn to do makes you feel so strong. Life is a little bit more refreshing because you tend to celebrate the little things, like be able to play frisbee again! haha.
My advice is to not act like a patient. Ive done years a medical stuff and what always got me through was being "ashley with a leg injury" or "ashley with cancer"....not "disabled ashley" or "cancer patient ashley". By doing as much as you possibly can every day to keep things "normal" makes it easier to recoop when things begin going up hill. It sounds like you are doing this though by doing things like walking your dogs
I dont know if you have done this, but I would practice with a straight leg. My mom and I put our legs in braces so they were straight (well, the doctor fussed the leg with a 15 degree angle. When you go for your second opinion, I would ask if they plan on doing something similar). Then we did things like sat in chairs, got in and out of a car, got up and down from the toilet. It was quite an adventure! haha!
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wanttoride
senior
Hey Ashley! You don't know how much your posts have lifted my spirits today! I know how you felt..."Audrey can't do this" and "Audrey can't do that"...so why ask her to join in? VERY frustrating. My daughter (who is 27) is having a very hard time with "Mom" not doing things like she used to and "Mom" having to say "no" to many outside activities. People start to stop asking you to come, or to join in, etc. It's been almost 2 years since this dreadful TKR nightmare, and I'm ready to put it all behind me.
As you have read in my posts, I was put in a cast, bend to 10 degrees about a month ago. it's a removeable cast, but I wear it most of the day. So...I've had a lot of practice seeing what it would be like to have my leg/knee fused. It really doesn't bother me, as simply bending the knee is much more painful, and I can do LESS without the cast. Not good! There are a lot of people that think I'm nuts for wanting it fused. Well...they don't live my life (or lack of it).
I'm glad you posted to what degree your surgeon fused your knee at. Can you tell me if you have any hamstring or "back of the knee" pain? Even without the cast on, my leg only bends to 10 degrees at best. I thought maybe they would fuse it to 0 degrees or 5 at most to make the leg as straight as possible. Do you (or Jo, jump in anytime!) know why they don't set it at 0 degrees? Why do they set it at that degree of bend? Do you have to alter your shoes/sneakers, etc. to compensate for the shortness of the fused leg? Did you or do you have any back pain from the limp or the difference in how you walk? I'm loaded with questions, so any you had, I also have!
I am really excited about the possibility of returning to work and maybe riding horses again! All my buddies are out on the trail today and have texted me letting me know how much they miss me. Very nice! I may be almost 50, but I (used to be) very active and fit. Are you saying I have that chance again??? oh boy!!!!!
As you have read in my posts, I was put in a cast, bend to 10 degrees about a month ago. it's a removeable cast, but I wear it most of the day. So...I've had a lot of practice seeing what it would be like to have my leg/knee fused. It really doesn't bother me, as simply bending the knee is much more painful, and I can do LESS without the cast. Not good! There are a lot of people that think I'm nuts for wanting it fused. Well...they don't live my life (or lack of it).
I'm glad you posted to what degree your surgeon fused your knee at. Can you tell me if you have any hamstring or "back of the knee" pain? Even without the cast on, my leg only bends to 10 degrees at best. I thought maybe they would fuse it to 0 degrees or 5 at most to make the leg as straight as possible. Do you (or Jo, jump in anytime!) know why they don't set it at 0 degrees? Why do they set it at that degree of bend? Do you have to alter your shoes/sneakers, etc. to compensate for the shortness of the fused leg? Did you or do you have any back pain from the limp or the difference in how you walk? I'm loaded with questions, so any you had, I also have!
I am really excited about the possibility of returning to work and maybe riding horses again! All my buddies are out on the trail today and have texted me letting me know how much they miss me. Very nice! I may be almost 50, but I (used to be) very active and fit. Are you saying I have that chance again??? oh boy!!!!!
awolfpaw
junior member
I dont have any back of the knee pain.Sometimes after a long day it can feel slightly tight, but nothing a little massage cant relieve. I think that by being active, it helps with that. I dont ever do leg exercises at the gym because my legs are super strong to compensate for how I walk! haha. My leg did hurt and it was a bit hard to get around at first, but if you work at it and stay active it quickly works its way back up. I also wouldnt say I have back pain as much as my back gets tired after a long ran of walking or standing.
I dont know when/why they would fuse the knee completely straight? Maybe if you have the internal rod? My surgeon explained that by setting it at 15 degrees, it would make it easier to move and sit, especially sit. It its stick straight, its hard to put it on the ground and you kinda teeter on the seat.
I did go to a specialist who fitted me with a lift in my shoe to comp for the leg height difference. Unfortunately, the biggest size that could go inside my shoe was not enough to fix the limp. If I wanted, I could go to a cobbler who could build onto one of my shoes, but my insurance wouldnt cover it. I didnt like the lift anyways and dont use it. In all honesty, i enjoy wearing flip flops most of the time.
Speaking of shoes/feet, I remembered something! The BIGGEST issue I had after my surgery was foot/ankle swelling. I was living in a dorm at college at the time and my ankle was so swollen that football players were impressed! haha. My foot swelled so bad that I needed to buy shoes that were 1/2-1size bigger than my other foot. Sneakers were out of the question for a while. I recommend buying a nice pair of clogs and slippers, they were the best for the situation.
Im glad I can be insight on this situation. When I was considering my options and looking at the fusion, the people I found online were not as optomistic. I spoke with a former dancer who told me her life was over and that she was depressed. I read awful statistics about depression and suicide. Its definitely not like that at all. That said, Im not saying "yay knee fusion" either. It is a hard surgery and tough process to relearn things and gain your strengths. It does ultimately have to be your decision that is made with your doctors and other important members of your life. I am just here to say that after weighing your options and if you decide to go this path, you are not alone
I dont know when/why they would fuse the knee completely straight? Maybe if you have the internal rod? My surgeon explained that by setting it at 15 degrees, it would make it easier to move and sit, especially sit. It its stick straight, its hard to put it on the ground and you kinda teeter on the seat.
I did go to a specialist who fitted me with a lift in my shoe to comp for the leg height difference. Unfortunately, the biggest size that could go inside my shoe was not enough to fix the limp. If I wanted, I could go to a cobbler who could build onto one of my shoes, but my insurance wouldnt cover it. I didnt like the lift anyways and dont use it. In all honesty, i enjoy wearing flip flops most of the time.
Speaking of shoes/feet, I remembered something! The BIGGEST issue I had after my surgery was foot/ankle swelling. I was living in a dorm at college at the time and my ankle was so swollen that football players were impressed! haha. My foot swelled so bad that I needed to buy shoes that were 1/2-1size bigger than my other foot. Sneakers were out of the question for a while. I recommend buying a nice pair of clogs and slippers, they were the best for the situation.
Im glad I can be insight on this situation. When I was considering my options and looking at the fusion, the people I found online were not as optomistic. I spoke with a former dancer who told me her life was over and that she was depressed. I read awful statistics about depression and suicide. Its definitely not like that at all. That said, Im not saying "yay knee fusion" either. It is a hard surgery and tough process to relearn things and gain your strengths. It does ultimately have to be your decision that is made with your doctors and other important members of your life. I am just here to say that after weighing your options and if you decide to go this path, you are not alone
awolfpaw
junior member
https://www.facebook.com/photo.php?pid=985565&l=706537afbd&id=513270225
If you are interested, here are pictures of what they did to my knee. My doctor said it was just like when he was doing surgery in vietnam! They really dont use the external component anymore.
If you are interested, here are pictures of what they did to my knee. My doctor said it was just like when he was doing surgery in vietnam! They really dont use the external component anymore.
awolfpaw
junior member
Josephine
NURSE DIRECTOR EMERITA
That's an Ilizarov, for sure, Ashley.
In the 'old days' we used to fix the legs dead straight but I believe there were some issues about muscle cramps and it being inconvenient at some points. I don't really know that side of things too well and it's been a canny while since I've seen one done!
In the 'old days' we used to fix the legs dead straight but I believe there were some issues about muscle cramps and it being inconvenient at some points. I don't really know that side of things too well and it's been a canny while since I've seen one done!
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wanttoride
senior
WOW!!!! Thanks for sharing, Ashley! How did you manage with "Roger" attached to your leg for that many months???
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wanttoride
senior
More questions: Do you have to be careful whereas you don't have a kneecap anymore? Do you have to wear a brace at all to protect the knee area from getting "hit"? Are there any special precautions you have to take now that the knee is fused? How is it walking on ice and snow? That's my biggest problem. The past 2 winters, I've pretty much been housebound, as slipping and falling would be disasterous!!!! 
...and cause a LOT of pain. Do you wear those "creepers" you put on the bottom of boots/sneakers? Have you ever fallen or tripped since you've had your knee fused? If so, how did you fall/trip and how did your leg take it? I've got my second opinion in 2 weeks, so I'm loading up on info. and questions! Thanks again Ashely for joining the forum!
...and cause a LOT of pain. Do you wear those "creepers" you put on the bottom of boots/sneakers? Have you ever fallen or tripped since you've had your knee fused? If so, how did you fall/trip and how did your leg take it? I've got my second opinion in 2 weeks, so I'm loading up on info. and questions! Thanks again Ashely for joining the forum!
Josephine
NURSE DIRECTOR EMERITA
People get their patellae removed and don't have any problems with it. It would be no different than getting a knock on the shin!
As for walking on ice, much the same. Best the wear ice grippers anyway, not just because your knee is fused. If you did fall, it wouldn't excruciatingly painful like it would if you fell right now.
It's been really good fortune for you having two members with fused knees, hasn't it?
As for walking on ice, much the same. Best the wear ice grippers anyway, not just because your knee is fused. If you did fall, it wouldn't excruciatingly painful like it would if you fell right now.
It's been really good fortune for you having two members with fused knees, hasn't it?
OP
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wanttoride
senior
Boy, you aren't kidding, Jo! What GREAT fortune! I had to chuckle last night...guess I was the first (?) to write about RSD and TKR and now we (BoneSmart) has a great topic and lots of information for anyone inquiring about knee fusion. Ashley has been a god-send!!! :wubroses:
The pics of her knee and "Roger" (too funny!) kind of make me go eeewwwwww.....!!!!! How do you keep infection out if those "rods" go through the skin and attach to the bone. Do they "put you out" to remove the brace, or ???? Do you think this would be what they would do for me, Jo...or would they do a metal rod? What do they do if they put in a metal rod? Do you leave the hospital with nothing?
The pics of her knee and "Roger" (too funny!) kind of make me go eeewwwwww.....!!!!! How do you keep infection out if those "rods" go through the skin and attach to the bone. Do they "put you out" to remove the brace, or ???? Do you think this would be what they would do for me, Jo...or would they do a metal rod? What do they do if they put in a metal rod? Do you leave the hospital with nothing?
A long rod is the method of choice if there is no infection
Basically, yes. At most you will have a leg brace for some weeks and, of course, crutches. You can bear weight as tolerated, the level of pain that migh occur tells you how much weight you can put on the leg. After some months you won´t need crutches and brace anymore. Of course, a rod is much more comfortable, no bulky device around your leg. The rod can stay in the leg for life if there are no problems with it. At the air port you may gain the attention of officers, because you will have metal in your leg
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