MUA It's been a long time.....
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NatalieMeadows
post-grad
Yes I never thought about that,I'll up my leg exercises that ortho gave me to keep it moving 
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NatalieMeadows
post-grad
So I finally dropped of at 4am UK time and woke at about 630 in a lot of pain.
The electric shock style pain has stopped and left a very weird aching.
All I want to do is sleep now
The electric shock style pain has stopped and left a very weird aching.
All I want to do is sleep now
wanttoride
senior
Very familiar to me, Natalie. Jamie is right. If your legs are "flinching", your muscles are reacting as well....and all of this would end result in aching. Can you tell me again why they are thinking about fusion and why?
Josephine
NURSE DIRECTOR EMERITA
If nerves jump, the muscles are very likely to have some after effects. The two structures are very closely related, you know! :wink1:
But as to why it happened, I'm sorry but I have no idea!
But as to why it happened, I'm sorry but I have no idea!
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NatalieMeadows
post-grad
Jo it could it be a piece of my SC that's pressing on a nerve?It has been happening on and off all day long it's horrible and it's making me jump!
Is there anything I can do for the flinching?
Audrey the surgeon I saw last week suggested it would be an idea because my knee feels so unstable and he could move it around quite easily and he said it shouldn't be doing that,he said if he put me under GA he reckons it would move even more as I wouldn't be screaming out in pain!!
Is there anything I can do for the flinching?
Audrey the surgeon I saw last week suggested it would be an idea because my knee feels so unstable and he could move it around quite easily and he said it shouldn't be doing that,he said if he put me under GA he reckons it would move even more as I wouldn't be screaming out in pain!!
wanttoride
senior
Does he know why it is so loose? Mine was also loose, but he did that on purpose. When I couldn't stand the pain from it being loose, he changed the spacer to a thicker one in hopes that it would make my leg more stable. The tendons and ligaments along side the knee were not touched, as those were "fine" and were not stretched, etc. He did warn me that with the thicker spacer, it would be even more difficult to straighten out the leg (which it was..I could only get to 8 degrees at best). My biggest fear was having the knee bend past where i was comfortable. After the thicker spacer, the most I could bend my knee was about 80 degrees. After that, the horrific pain would start. I remember tripping and having it bend further, and i thought i was going to die from the pain. That's when I said..."enough is enough".
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NatalieMeadows
post-grad
Mine doesn't bend past 80 now it only ever got to 90 but I've lost 10 over the last 6 months and I can't fully extend it either :(
It's been noticably loose since about 10 months post but previous to that the PT said it was slightly loose but my surgeon said there wasn't much he could do when I saw him last July and because of my previous disease and having so much muscle wastage the TKR just wouldn't be ever be 100 percent but it has got worse since July to the point when I wash in the shower (I have a seat in my shower) And wash over my knee I feel it move and it knocks me sick!Without this brace if I try to walk on it I can feel it almost going the wrong way to what I'm walking!
It's very strange,the surgeon the other day said I was bound to have more movement in it because of my age?
Was your knee visibly loose on an x ray?
It's been noticably loose since about 10 months post but previous to that the PT said it was slightly loose but my surgeon said there wasn't much he could do when I saw him last July and because of my previous disease and having so much muscle wastage the TKR just wouldn't be ever be 100 percent but it has got worse since July to the point when I wash in the shower (I have a seat in my shower) And wash over my knee I feel it move and it knocks me sick!Without this brace if I try to walk on it I can feel it almost going the wrong way to what I'm walking!
It's very strange,the surgeon the other day said I was bound to have more movement in it because of my age?
Was your knee visibly loose on an x ray?
wanttoride
senior
Wow! This is really frightening. No...my knee wasn't visibly loose on the x-rays. I just could feel that it wasn't "tight". It just felt very unstable and I didn't trust it at all. There was a lot of "clunking" and "thunking" when it was loose...more than you would get with a "normal" TKR. Gosh, Natalie. I just don't know what to say. I'm sooo sorry that this is happening to you.
You must also be afraid of bending it past your 80 degrees if you were to fall, or catch yourself in a trip. I'm guessing PT is out of the question at this point, due to the pain.
With the fusion, you have to use your hip flexors a lot. Those aren't affected at all are they? What "disease" did you have that put you in this situation?
I'm REALLY glad you have this brace. Is it a brace that makes your leg straight all the time...as in no bending or flexing? I would see if your Dr. would put you into a removeable cast. Mine was not plaster, as that was too heavy. it was made of a light-weight material. Jo...do you know what it was made of? having this cast would stop ANY and ALL movement of your knee, kneecap etc. and at least give you some time without pain.
Are you leaning towards a fusion at this point? What else does your Dr. say he can do to try to help you?
You must also be afraid of bending it past your 80 degrees if you were to fall, or catch yourself in a trip. I'm guessing PT is out of the question at this point, due to the pain.
With the fusion, you have to use your hip flexors a lot. Those aren't affected at all are they? What "disease" did you have that put you in this situation?
I'm REALLY glad you have this brace. Is it a brace that makes your leg straight all the time...as in no bending or flexing? I would see if your Dr. would put you into a removeable cast. Mine was not plaster, as that was too heavy. it was made of a light-weight material. Jo...do you know what it was made of? having this cast would stop ANY and ALL movement of your knee, kneecap etc. and at least give you some time without pain.
Are you leaning towards a fusion at this point? What else does your Dr. say he can do to try to help you?
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NatalieMeadows
post-grad
Yes I've been in a position where it's bent further than 80 and oh my god it hurts!Physio gave up on me a long time ago they said they have never come across a patient who can't get full ROM after a TKR.
As far as I know there's nothing wrong with my hip the disease I have is called Synovial Chondromatosis and it can affect any joint but I only have it in my knee. (SOC) is a rare disease that creates a benign change in the synovium tissue, which changes to form bone-forming cartilage.
It causes secondary osteoarthritis which led to my TKR but the disease can always re occur and parts can float around the knee and sit on nerves or even in between the replacement and therefore cause problems.
It wasn't my surgeon that suggested the fusion it was one at a different hospital that I saw as an emergency so I'm not even sure mine will give me that option he did say last year that he would put rods in to stabilise it more if it became an issue for me but I'm not really sure what he meant?
The brace has a small hinge in it so can move to be bent but I'm keeping it almost straight but I can't get it totally straight.What made you go for the fusion and why did your doc suggest it?
I can feel mine clunking all the time and mine hyperextends all the time too which is awful and makes me stop and scream out :(
As far as I know there's nothing wrong with my hip the disease I have is called Synovial Chondromatosis and it can affect any joint but I only have it in my knee. (SOC) is a rare disease that creates a benign change in the synovium tissue, which changes to form bone-forming cartilage.
It causes secondary osteoarthritis which led to my TKR but the disease can always re occur and parts can float around the knee and sit on nerves or even in between the replacement and therefore cause problems.
It wasn't my surgeon that suggested the fusion it was one at a different hospital that I saw as an emergency so I'm not even sure mine will give me that option he did say last year that he would put rods in to stabilise it more if it became an issue for me but I'm not really sure what he meant?
The brace has a small hinge in it so can move to be bent but I'm keeping it almost straight but I can't get it totally straight.What made you go for the fusion and why did your doc suggest it?
I can feel mine clunking all the time and mine hyperextends all the time too which is awful and makes me stop and scream out :(
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NatalieMeadows
post-grad
I woke up crying this morning the pain was that intense had some Oramorph and it took the edge off but didn't take it away totally.
Sorry for moaning guys xx
Sorry for moaning guys xx
wanttoride
senior
I think the "rods" he's talking about might be doing a revision of your TKR and putting in components with "stems". My tibial component had a "stem" in it...it was about 7" long and went into the bone canal. He decided to use that type of component for stability. However, it sounds like you have a lot more going on than I did/do with the disease you have.
I was right where you are now, Natalie. Couldn't bend, couldn't straighten and was in constant fear of the pain I would get when I would bend it. I also had a full-length brace that had locks on the side that I could set to certain degrees. The only time I changed the settings was when I was sitting down. Other than that, it was locked straight all the time.
After wearing the brace for months and HATING it, my Dr. put me in the removeable cast. (I'll post a pic of it for you) Like I've said before...it was a MIRACLE! Much less pain, and my anxiety level pretty much went away because I wasn't afraid of pain (because there wasn't much) and wasn't afraid that it was going to bend to far.
After months of being in the cast, I decided that life with a straight leg and almost no pain was worth having the fusion surgery. I have no regrets. NONE! Living in the pain that you are in now....I've been there and my heart goes out to you.
I have "degenerative joint disease". Luckily, it has only affected my left jaw, my left knee joint, and my right shoulder. I have TMJ, but it doesn't bother me too much. I've had (2) shoulder surgeries back in the 1990's for dislocation and rotator cuff displacement. My shoulder is fine now..just a small amount of ROM missing. The knee took the brunt of it all.
I think Jo can post a pic of an xray with "stem" in them. I don't know if this is what your Dr. is thinking of, but I can't think of anything else. Maybe Jo can?
If you do not bend your knee at all, does the pain go away? Are you able to walk with the brace locked straight and have less pain? These are key questions you want to explore that might point you in the direction of a fusion. Might. I'll post a pic of my cast, "Peg" below. The cast was set at 10 degree bend.
I was right where you are now, Natalie. Couldn't bend, couldn't straighten and was in constant fear of the pain I would get when I would bend it. I also had a full-length brace that had locks on the side that I could set to certain degrees. The only time I changed the settings was when I was sitting down. Other than that, it was locked straight all the time.
After wearing the brace for months and HATING it, my Dr. put me in the removeable cast. (I'll post a pic of it for you) Like I've said before...it was a MIRACLE! Much less pain, and my anxiety level pretty much went away because I wasn't afraid of pain (because there wasn't much) and wasn't afraid that it was going to bend to far.
After months of being in the cast, I decided that life with a straight leg and almost no pain was worth having the fusion surgery. I have no regrets. NONE! Living in the pain that you are in now....I've been there and my heart goes out to you.
I have "degenerative joint disease". Luckily, it has only affected my left jaw, my left knee joint, and my right shoulder. I have TMJ, but it doesn't bother me too much. I've had (2) shoulder surgeries back in the 1990's for dislocation and rotator cuff displacement. My shoulder is fine now..just a small amount of ROM missing. The knee took the brunt of it all.
I think Jo can post a pic of an xray with "stem" in them. I don't know if this is what your Dr. is thinking of, but I can't think of anything else. Maybe Jo can?
If you do not bend your knee at all, does the pain go away? Are you able to walk with the brace locked straight and have less pain? These are key questions you want to explore that might point you in the direction of a fusion. Might. I'll post a pic of my cast, "Peg" below. The cast was set at 10 degree bend.
wanttoride
senior
hhhhmmm...I've tried to copy and paste the .jpg image of my cast, but for some reason, I can't "paste" it here. I'll keep trying....
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NatalieMeadows
post-grad
Wow Audrey you have been through so very much too :( I am so glad you are finally getting somewhere now.
If I keep my knee at a certain angle I don't get agony I still get pain but not agony,but if I lie without pillows under it or put it straight out totally it really really hurts it has to have a slight tiny bend in it.I don't think I've tried walking with totally straight as the brace has a slight bend in it.
The pain is getting worse every day and I'm not sure how much more I can take I'm over emotional today mainly because of lack of sleep but I've just taken my 5th lot of oramorph of the day and wondering if it will help me sleep and shift just a percentage of this awful pain.
How are you doing today?Hows your pain?xx
If I keep my knee at a certain angle I don't get agony I still get pain but not agony,but if I lie without pillows under it or put it straight out totally it really really hurts it has to have a slight tiny bend in it.I don't think I've tried walking with totally straight as the brace has a slight bend in it.
The pain is getting worse every day and I'm not sure how much more I can take I'm over emotional today mainly because of lack of sleep but I've just taken my 5th lot of oramorph of the day and wondering if it will help me sleep and shift just a percentage of this awful pain.
How are you doing today?Hows your pain?xx
wanttoride
senior
I'm doing pretty good this morning! had a little RSD symptoms, but they have gone away. No pain in my leg at all, and it's raining outside, too!
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NatalieMeadows
post-grad
That's good
Thanks for listening and chatting Audrey you've really helped xx
Thanks for listening and chatting Audrey you've really helped xx
Natalie, I am so sorry you are not getting any results from those meds. Perhaps you need to make a trip to A&E? Certainly you need something to calm things down so you can rest (sleep). Hang in there Natalie!
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NatalieMeadows
post-grad
I'm trying I really am Jaycey I feel like I'm slowly cracking up!I know it's the lack of sleep pain and all the meds that are making me feel over emotional I have rang NHS direct an they got in touch with Urgent Care at A&E and they said there wouldn't me anything stronger than what I'm already taking and to double my dosage of Fentanyl.
My GP is coming in the morning I will see what he says.
My GP is coming in the morning I will see what he says.
Lindawalms
graduate
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I hope doubling up fentanyl helps!
xoxoxo,
Linda
xoxoxo,
Linda
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NatalieMeadows
post-grad
Thanks Linda me too xx
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