Revision TKR Knee replacement is not nice to me...
- Thread starter Coachie
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OP
OP
Coachie
senior
I've had such a long week and am frustrated :(
Could someone explain to me what it would feel like if I do have nerve pain and/or nerve damage? At an appointment 4 weeks ago, I said something about how my pain did not burn or spread down my leg or whatever, and the ortho said that nerve pain isn't always like that- but when I looked it up online, almost every article I have read mentions the burning pain.
If I have pain under my knee cap as I am standing up, how can that be nerve related? I am patiently waiting for my EMG to be scheduled, but until then, I have no idea what to think.
Could someone explain to me what it would feel like if I do have nerve pain and/or nerve damage? At an appointment 4 weeks ago, I said something about how my pain did not burn or spread down my leg or whatever, and the ortho said that nerve pain isn't always like that- but when I looked it up online, almost every article I have read mentions the burning pain.
If I have pain under my knee cap as I am standing up, how can that be nerve related? I am patiently waiting for my EMG to be scheduled, but until then, I have no idea what to think.
RestAssured
alpha
Coachie,
I am glad you are letting Jamie help you with finding another revisionist! I have had nerve pain, and I can tell you, Yes it does shoot down the leg. The nerves feel like they are on fire and the pain can get to the unbearable level even when you are sitting!
I am going to wear my old unloader brace this weekend because of something strange that I had happen in PT. I don't think a brace is bad for a short term solution, but in your case you are talking about the kneecap area, so I don't know much about that.
I think seeing another revisionist is a much better bet!
Keep posting and know that we care about you!
I am glad you are letting Jamie help you with finding another revisionist! I have had nerve pain, and I can tell you, Yes it does shoot down the leg. The nerves feel like they are on fire and the pain can get to the unbearable level even when you are sitting!
I am going to wear my old unloader brace this weekend because of something strange that I had happen in PT. I don't think a brace is bad for a short term solution, but in your case you are talking about the kneecap area, so I don't know much about that.
I think seeing another revisionist is a much better bet!
Keep posting and know that we care about you!
OP
OP
Coachie
senior
My pain is not like nerve pain, then. My pain is not like a "fiery" pain, doesn't shoot down my leg or travel anywhere. My knee aches quite often, but it feels like that deep bone pain type of pain I had before the surgery. I talked to my primary physician's office yesterday, and she will not help me get another referral until I go in and see her in her office. Of course her earliest available appointment is May 13th, so once again it is wait, wait, wait... 
RestAssured
alpha
Why is your primary physician needing to see you about the knee problem? It is time for a revisionist that is a real specialist in treating knees, and that won't tell you it is about needing time for bone to grow!
Coachie,
I try to stay very positive, but I am sad that they are giving you what I consider to be the runaround.
Telling you they can't do a bonescan for the 1st year! :hissyfit:
Telling you that you need to come back in 6 months for more bone to grow!
I had a doctor like that when I was going through another type of surgery and he messed up! I finally ended up going to a specialist only to hear "who butched you?"
I don't like to see you living in pain because of arrogant doctors! There are very competent surgeons that can take care of you.
Take care of you!
Coachie,
I try to stay very positive, but I am sad that they are giving you what I consider to be the runaround.
Telling you they can't do a bonescan for the 1st year! :hissyfit:
Telling you that you need to come back in 6 months for more bone to grow!
I had a doctor like that when I was going through another type of surgery and he messed up! I finally ended up going to a specialist only to hear "who butched you?"
I don't like to see you living in pain because of arrogant doctors! There are very competent surgeons that can take care of you.
Take care of you!
OP
OP
Coachie
senior
Insurance reasons. My primary Dr has to give a referral for appointments with specialists. If I were to make my own appointment without a referral, I would have to pay full price for an appointment. With a referral, I only have to pay a $25 co-pay. She has been supportive all along, but for some reason is balking now. Maybe because I've seen 2 different orthopedics in the last 2 months?
This one I saw on Monday has experience in revisions and such- I had such hope that he could help figure out what was wrong but all he could say was that according to my x-rays, the joint didn't look loose. I asked if I am supposed to just keep limping for the rest of my life and saying "ow" or crying out almost every time I try to stand up and he didn't really answer me.
I'm sure that my family doctor and ortho are sick of hearing from me as I have called both at least 2x a month since November. But when you are living with daily pain that never gets below a 5; when you have to teach sitting at your desk and you are uncomfortable within 5 minutes of school starting and you never leave your classroom because it means walking down a hallway or down some stairs; when you cannot walk more than 50 feet without having to stop and rest because your knee hurts so much, and after you do walk more than 50 feet you knee is so stiff the rest of the day and all of the next day that you can't even enjoy any part of the day- then there is a problem. I've tried to share all of this with the dr's around me, but no one seems to care and/or listen to me.
I keep telling everyone that I will keep fighting, but I am just so dang tired and so discouraged. I am a woman of faith and that is pretty much all that is keeping me in the fight.
RestAssured
alpha
Coachie,
Pain was what drove me out of the teaching profession! I was in so much pain I had unloader braces on both legs and relied on a walker.
I see now why you have to see your Primary care doc. Tell her that you are having trouble doing your job which is your livelihood! Carry in the name of a revision specialist that Jamie has helped you find, and tell her that you need for her to refer you to that surgeon.
Life is too short to be in so much pain! I am doing so much better from this morning even though it sounded like it might be something bad!
Remember God will always be there to take care of you! We may not get an answer as "soon" as "we" want, but always know that God is listening!
Pain was what drove me out of the teaching profession! I was in so much pain I had unloader braces on both legs and relied on a walker.
I see now why you have to see your Primary care doc. Tell her that you are having trouble doing your job which is your livelihood! Carry in the name of a revision specialist that Jamie has helped you find, and tell her that you need for her to refer you to that surgeon.
Life is too short to be in so much pain! I am doing so much better from this morning even though it sounded like it might be something bad!
Remember God will always be there to take care of you! We may not get an answer as "soon" as "we" want, but always know that God is listening!
Josephine
NURSE DIRECTOR EMERITA
2 times a month? My doctor would be hearing from me 2 times a week if I were in your shoes! Probably every day.
Ever heard the saying "it's the squeaky wheel that gets the oil"?
Ever heard the saying "it's the squeaky wheel that gets the oil"?
Coachie, You and all of us know you're right about this not being nerve pain.
The only nerve pain you might have is the pain of THEIR nerve!
I wish there was more we could do for you . . .
The only nerve pain you might have is the pain of THEIR nerve!
I wish there was more we could do for you . . .
OP
OP
Coachie
senior
I am curious as to what this Physiatrist is going to say on Monday. I am pretty ticked off that I was led to believe that she would be doing an EMG on Monday but now have been told that she isn't and that it is just an evaluation appointment for her to figure out what she can or could do. So in other words- nothing will happen and I'll leave there just as disappointed as I have left every other appointment. So it will be more waiting with no answers in sight.
My biggest fear is that I am pushed to wait and wait until and then come September or so they figure out something is wrong. At that point, I'll have to wait another 9 months until summer since when one is a teacher, having 8 weeks off in the summer is the time for surgeries and corrective care- during the school year is not possible for me. I don't have the sick time to use and since I am single and the sole provider, there would be no way to support myself (especially since Maine does not do short term disability.) I don't know if I can wait another full year with this sort of pain and such. It worries me to think I might have to.
My biggest fear is that I am pushed to wait and wait until and then come September or so they figure out something is wrong. At that point, I'll have to wait another 9 months until summer since when one is a teacher, having 8 weeks off in the summer is the time for surgeries and corrective care- during the school year is not possible for me. I don't have the sick time to use and since I am single and the sole provider, there would be no way to support myself (especially since Maine does not do short term disability.) I don't know if I can wait another full year with this sort of pain and such. It worries me to think I might have to.
RestAssured
alpha
Coachie,
I would love to fly up to Maine to help you out with these doctors but I know the "ball is in your court!" :wink1:
When you see that Doctor on Monday, be ready! Tell her you are not willing to accept being in horrible pain for another year while they sit back and "consult" with each other! This is YOUR life not theirs, and they need to treat you with the respect YOU deserve!
It is time for your GP to move, and move NOW! She is not the one in pain, you are! Make it known to this "new" doctor that you will not "sit on the sidelines" anymore!
You are a Coach, I was a Coach, so you understand that if you coached your players the way the "doctors" are "coaching" you, you would never win a game!
Go "get" em, and don't take "no" for an answer! Put on that Coaching whistle, and let them know who is in charge!
I would love to fly up to Maine to help you out with these doctors but I know the "ball is in your court!" :wink1:
When you see that Doctor on Monday, be ready! Tell her you are not willing to accept being in horrible pain for another year while they sit back and "consult" with each other! This is YOUR life not theirs, and they need to treat you with the respect YOU deserve!
It is time for your GP to move, and move NOW! She is not the one in pain, you are! Make it known to this "new" doctor that you will not "sit on the sidelines" anymore!
You are a Coach, I was a Coach, so you understand that if you coached your players the way the "doctors" are "coaching" you, you would never win a game!
Go "get" em, and don't take "no" for an answer! Put on that Coaching whistle, and let them know who is in charge!
OP
OP
Coachie
senior
I'm trying to fight and trying to think positively and all of that and then I read back over what I have written and I will realize how defeated I feel. I have always been a writer- and can express myself in words way better than any other way- and often I don't even really know how I am feeling until I am writing things down.
I am working hard to not allow myself to stay down. I've never been one to accept defeat and I can't allow that now so I have got to find a way to find a positive in this.
I am working hard to not allow myself to stay down. I've never been one to accept defeat and I can't allow that now so I have got to find a way to find a positive in this.
RestAssured
alpha
Coachie,
It is so easy to get down when you are in constant pain! That's why we are here as your "cheerleaders!":biggrin:
We have all been down, it is only natural.
It is so easy to get down when you are in constant pain! That's why we are here as your "cheerleaders!":biggrin:
We have all been down, it is only natural.
Below is an excerpt from wikipedia describing the scope of practice of physiatrists (plus the link). Coachie, try to think of this visit as ruling out stuff as well as possibly identifying problems. Wear your Sherlock Holmes hat. We'll be your Watsons. We're not giving up! We'll be watching for your report . . .
History
The term 'physiatry' was coined by Dr. Frank H. Krusen in 1938. The term was accepted by the American Medical Association in 1946. The field grew notably in response to the demand for sophisticated rehabilitation techniques for the large number of injured soldiers returning from World War II.
Scope of the field
Physical medicine and rehabilitation involves the management of disorders that alter the function and performance of the patient. Emphasis is placed on the optimization of function through the combined use of medications, physical modalities, physical training with therapeutic exercise, movement & activities modification, adaptive equipment and assistive device, orthotics (braces), prosthesis, and experiential training approaches.
Physical Medicine & Rehabilitation physicians may also perform electrodiagnostics which are used to provide nervous system functional information for diagnosis and prognosis for various neuromuscular disorders. The common electrodiagnostic tests performed by physiatrists are nerve conduction studies (NCS) and needle electromyographies (EMG). The nerve conduction study involves electrical stimulation to peripheral nerves, and the nerves' responses are measured including such things as onset latency, amplitude, and conduction velocity. Needle electromyography requires needle electrode insertion into the muscles to detect the electrical potential generated from muscle fibers. Abnormal electrical potentials, such as fibrillation potential or positive sharp waves, detected by EMG needles indicate the presence of muscle fibers that have abnormal nerve supplies.
Practically any disease condition that is associated with or leaves a person with PAIN, PARALYSIS and/or DEFORMITY, alone or in combination, has a potential to be significantly benefited by physiatric intervention.
https://en.wikipedia.org/wiki/Physical_medicine_and_rehabilitation
History
The term 'physiatry' was coined by Dr. Frank H. Krusen in 1938. The term was accepted by the American Medical Association in 1946. The field grew notably in response to the demand for sophisticated rehabilitation techniques for the large number of injured soldiers returning from World War II.
Scope of the field
Physical medicine and rehabilitation involves the management of disorders that alter the function and performance of the patient. Emphasis is placed on the optimization of function through the combined use of medications, physical modalities, physical training with therapeutic exercise, movement & activities modification, adaptive equipment and assistive device, orthotics (braces), prosthesis, and experiential training approaches.
Physical Medicine & Rehabilitation physicians may also perform electrodiagnostics which are used to provide nervous system functional information for diagnosis and prognosis for various neuromuscular disorders. The common electrodiagnostic tests performed by physiatrists are nerve conduction studies (NCS) and needle electromyographies (EMG). The nerve conduction study involves electrical stimulation to peripheral nerves, and the nerves' responses are measured including such things as onset latency, amplitude, and conduction velocity. Needle electromyography requires needle electrode insertion into the muscles to detect the electrical potential generated from muscle fibers. Abnormal electrical potentials, such as fibrillation potential or positive sharp waves, detected by EMG needles indicate the presence of muscle fibers that have abnormal nerve supplies.
Practically any disease condition that is associated with or leaves a person with PAIN, PARALYSIS and/or DEFORMITY, alone or in combination, has a potential to be significantly benefited by physiatric intervention.
https://en.wikipedia.org/wiki/Physical_medicine_and_rehabilitation
Coachie.....write down some bullet points that you want to be sure and cover with this doctor on Monday. That will help to make sure you don't forget anything and that you can strongly make your case to this doctor.
I'm sorry it's taking me longer than I expected to help you with finding some potential revision specialists. I should be able to finish up very soon though. I agree with Sonja though that we need to have you settled in on a doctor by the time you see your GP again.
Are you able to get referrals from her for a surgeon who is out of state???
I'm sorry it's taking me longer than I expected to help you with finding some potential revision specialists. I should be able to finish up very soon though. I agree with Sonja though that we need to have you settled in on a doctor by the time you see your GP again.
Are you able to get referrals from her for a surgeon who is out of state???
OP
OP
Coachie
senior
I don't see why not. I think she knows that I am frustrated and all, but they just don't know how to handle it. She is waiting because she wants to talk to me personally about what the other orthos have said in their reports. I don't like the waiting as it is really getting to me.
OP
OP
Coachie
senior
Well this has been a day that I would rather forget.
My 2nd period students were off the wall this morning- I'm not sure why, but they were- and my patience was worn about as thin as it can be. My next two blocks got the heads up from some of my 2nd block students and were a little calmer, but I should have guessed that the way my school day went might be a sign of what is to come...
At the end of the day I headed to my appointment with the Physiatrist. I thought I knew what I was going in to since I had done research, read the articles on here and on other websites- but I was wrong. I sat there in the Dr's office, she asked me a few questions, touched my leg a few times and said that the ortho that had referred me to her had mentioned an EMG so she asked, "Do you want to have an EMG done?" and I said, "well, isn't that why I'm here? Because the OS thought I had some nerve issues?" and she said, "ok. I guess we can do that then if that's what you want." and then packed up as if to leave the room.
As she was packing her stuff up, she said, "do you have any questions?" and I thought to myself, "about what? She hasn't said anything or helped me in any way..." but I didn't say that, I said instead, "Yes, I have a question. Is this it?" and she said, "is what it?" so I responded, "there's nothing else to this appointment?" and she said, "no, that's it for now," and she ushered me out the door to make an appointment for an EMG (next Tuesday ~ May 10th.)
I honestly don't know what to think right now. It's not like I expected a cure, but I guess I thought maybe a hint of what she thinks could be wrong- or maybe a hint of what I could do for the time being to help with this. But nothing. This is my 3rd Monday in the past 4 Mondays that I have come home let down. Every time I go into an appointment I try to convince myself to not allow too much hope, but I do hope because that's just in my nature- and then a few minutes later I am feeling discouraged because there is nothing out there to help me in the present time. Yes, there might be something that is picked up by the EMG, but that is still a week away and it is like I am constantly waiting and waiting and waiting and the pain is still here. I still can't stand up without usually muttering "ouch" and the process of sitting down is the same thing. I still can't walk more than 10 feet without wanting to cry and without my knee becoming so stiff later on that I can't soothe it, and I still can't do what I had this knee replacement for- live life as I've always dreamed of. Freely and without pain.
My 2nd period students were off the wall this morning- I'm not sure why, but they were- and my patience was worn about as thin as it can be. My next two blocks got the heads up from some of my 2nd block students and were a little calmer, but I should have guessed that the way my school day went might be a sign of what is to come...
At the end of the day I headed to my appointment with the Physiatrist. I thought I knew what I was going in to since I had done research, read the articles on here and on other websites- but I was wrong. I sat there in the Dr's office, she asked me a few questions, touched my leg a few times and said that the ortho that had referred me to her had mentioned an EMG so she asked, "Do you want to have an EMG done?" and I said, "well, isn't that why I'm here? Because the OS thought I had some nerve issues?" and she said, "ok. I guess we can do that then if that's what you want." and then packed up as if to leave the room.
As she was packing her stuff up, she said, "do you have any questions?" and I thought to myself, "about what? She hasn't said anything or helped me in any way..." but I didn't say that, I said instead, "Yes, I have a question. Is this it?" and she said, "is what it?" so I responded, "there's nothing else to this appointment?" and she said, "no, that's it for now," and she ushered me out the door to make an appointment for an EMG (next Tuesday ~ May 10th.)
I honestly don't know what to think right now. It's not like I expected a cure, but I guess I thought maybe a hint of what she thinks could be wrong- or maybe a hint of what I could do for the time being to help with this. But nothing. This is my 3rd Monday in the past 4 Mondays that I have come home let down. Every time I go into an appointment I try to convince myself to not allow too much hope, but I do hope because that's just in my nature- and then a few minutes later I am feeling discouraged because there is nothing out there to help me in the present time. Yes, there might be something that is picked up by the EMG, but that is still a week away and it is like I am constantly waiting and waiting and waiting and the pain is still here. I still can't stand up without usually muttering "ouch" and the process of sitting down is the same thing. I still can't walk more than 10 feet without wanting to cry and without my knee becoming so stiff later on that I can't soothe it, and I still can't do what I had this knee replacement for- live life as I've always dreamed of. Freely and without pain.
Oh dear. Rotten!
I dunno, Coachie. What philosophy can I pull out of my hat to help you keep moving forward? Maybe something along the lines of "you have to kiss a million frogs to meet a prince - ??" No, not very comforting. But yet moving forward ends up being the only choice and my money is on a revisionist who takes you seriously. I know you have Jamie on the case, and we're all behind you in our own way . . .
I dunno, Coachie. What philosophy can I pull out of my hat to help you keep moving forward? Maybe something along the lines of "you have to kiss a million frogs to meet a prince - ??" No, not very comforting. But yet moving forward ends up being the only choice and my money is on a revisionist who takes you seriously. I know you have Jamie on the case, and we're all behind you in our own way . . .
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