Revision THR Nanamac's story - Part 2
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nanamac
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Re: This is my story
I'm here, thanks guys. Well, nothing showed up on the x-ray but i am still in terrible pain, worse today after posing for the x-rays actually. He tried to reassure me that everything was fine, but I am too sore to believe it.
I see my GP on Monday and perhaps she will have some answers. The pain in my knees and the bad leg is just awful, worse when I get up in the morning, and then I start taking the Oxycodone and feel better.
The OS was very interested in the infection and referred me to a knee guy but felt whateven infection I had, the inflammation from it has settled in my knees/legs. He is going to look into the hospital records and try to help.
That is all he could offer really. Said if I was still hurting in a few weeks to call but otherwise he'd see me in 3-4 months. So, back to square one.
I know, try another doctor, hospital, healthcare system. I could do all that but I don't think I'm not being treated well, they just don't have answers! I am going to try the pain clinic doctor now that I had the xray. I just wanted to be sure everything looked ok on film.
So, sorry I didn't post sooner. Down? You betcha! Hurting? Oh yea. But, I am going to find the answer...what ever it takes. But I have to stay with the folks that have been working on this for now.
It will be way too difficult for me to start all of this over with another health care outfit. I am just not well enought to do it and don't have people that can help me. And Bill is older and still works! So, this is it!
I'm here, thanks guys. Well, nothing showed up on the x-ray but i am still in terrible pain, worse today after posing for the x-rays actually. He tried to reassure me that everything was fine, but I am too sore to believe it.
I see my GP on Monday and perhaps she will have some answers. The pain in my knees and the bad leg is just awful, worse when I get up in the morning, and then I start taking the Oxycodone and feel better.
The OS was very interested in the infection and referred me to a knee guy but felt whateven infection I had, the inflammation from it has settled in my knees/legs. He is going to look into the hospital records and try to help.
That is all he could offer really. Said if I was still hurting in a few weeks to call but otherwise he'd see me in 3-4 months. So, back to square one.
I know, try another doctor, hospital, healthcare system. I could do all that but I don't think I'm not being treated well, they just don't have answers! I am going to try the pain clinic doctor now that I had the xray. I just wanted to be sure everything looked ok on film.
So, sorry I didn't post sooner. Down? You betcha! Hurting? Oh yea. But, I am going to find the answer...what ever it takes. But I have to stay with the folks that have been working on this for now.
It will be way too difficult for me to start all of this over with another health care outfit. I am just not well enought to do it and don't have people that can help me. And Bill is older and still works! So, this is it!
Re: This is my story
Oh Janet, I feel for you and how frustrating this whole ordeal is. Wish a magic wand could help you. If they can't see it on xrays, you're fine. But there is so much that can't be seen. After my surgery the doctor came at night and told me I had so much damage inside it never showed up on xrays. We are here for you.
Oh Janet, I feel for you and how frustrating this whole ordeal is. Wish a magic wand could help you. If they can't see it on xrays, you're fine. But there is so much that can't be seen. After my surgery the doctor came at night and told me I had so much damage inside it never showed up on xrays. We are here for you.
Re: This is my story
Well I am relieved you checked back in Janet. But so sorry you are still searching for the answers.
We are here for you! Please don't go too far away!
Well I am relieved you checked back in Janet. But so sorry you are still searching for the answers.
We are here for you! Please don't go too far away!
cotton1958
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Re: This is my story
Well, I am glad for you that knees looked okay. Sorry they cannot figure out whatever else is going on....hang in there. Go back or call as he suggested.
Well, I am glad for you that knees looked okay. Sorry they cannot figure out whatever else is going on....hang in there. Go back or call as he suggested.
lisanewmc
post-grad
Re: This is my story
glad you posted but sad you're still no nearer
glad you posted but sad you're still no nearer
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nanamac
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Re: This is my story
Well Jo, your feeling that the stem is loose doesn't seem to be the problem as nothing has been mentioned or shows up on x-ray. How would I know? I honestly feel that the leg was attached crooked! The engineering is off. That is why I can't climb stairs etc. It just doesn't fit right.
So obviously trying to walk/climb stairs etc. is not happening naturally. Does that make any sense to you guys? It always feels like something is going to snap or break if i try to do certain things like bend forward to cut my toenails.
There is no flexability. Then, if I step down with the good leg, the pressure on the top of the femur on the bad leg, from the stem, feels like it is going to pop it out of the socket! Picture doing what I am talking about. I have to go up and down one foot at a time.
I am 18 months now and things are getting worse not better. Yet on film everything looks "fine".
Helen, no one has looked at my knees yet. The appointment with the knee guy is November 22nd. First available. I feel so totally helpless here. No one can tell me what is wrong yet the pain keeps getting worse.
So, now the waiting game again. And, I have been in so much pain since the fall, I have gone thru the months supply of percocet in two weeks and don't think I can get it refilled before the 23rd so until then I will be in terrible pain.
Not a happy camper here...
Well Jo, your feeling that the stem is loose doesn't seem to be the problem as nothing has been mentioned or shows up on x-ray. How would I know? I honestly feel that the leg was attached crooked! The engineering is off. That is why I can't climb stairs etc. It just doesn't fit right.
So obviously trying to walk/climb stairs etc. is not happening naturally. Does that make any sense to you guys? It always feels like something is going to snap or break if i try to do certain things like bend forward to cut my toenails.
There is no flexability. Then, if I step down with the good leg, the pressure on the top of the femur on the bad leg, from the stem, feels like it is going to pop it out of the socket! Picture doing what I am talking about. I have to go up and down one foot at a time.
I am 18 months now and things are getting worse not better. Yet on film everything looks "fine".
Helen, no one has looked at my knees yet. The appointment with the knee guy is November 22nd. First available. I feel so totally helpless here. No one can tell me what is wrong yet the pain keeps getting worse.
So, now the waiting game again. And, I have been in so much pain since the fall, I have gone thru the months supply of percocet in two weeks and don't think I can get it refilled before the 23rd so until then I will be in terrible pain.
Not a happy camper here...
sweetcaroline
member
Re: This is my story
Janet, how frustrating that you have to wait almost two months to see the "knee guy". Doesn't your OS do knees too?
I'm so sorry you're going through this.
Janet, how frustrating that you have to wait almost two months to see the "knee guy". Doesn't your OS do knees too?
I'm so sorry you're going through this.
cotton1958
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Re: This is my story
Sorry about that. Frustrating you have to wait!
My knee Dr. x-rayed my hips when I fell, and he doesn't do hips. Just knees and shoulders.
Sorry about that. Frustrating you have to wait!
My knee Dr. x-rayed my hips when I fell, and he doesn't do hips. Just knees and shoulders.
Suzieslips
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Re: This is my story
Janet, I've been reading your updates, but really don't know what to say.
(should have said something.... sorry!
)
If it was me going through all of this I would be frantic, frustrated and depressed.
I do understand you not wanting to go to another health care team, but I also remember that, near the start of this thread, there are x-ray pics of your hip and Jo found problems in the way the bottom part fits into the bone..... And I read that everyone on the team is telling you there is nothing wrong with your (new) x-rays, and I still wonder....
Perhaps by now they really should be suggesting a revision, even though they can't see anything wrong. I thought it was usual practice to do so, but I guess not....
I am thinking of you.
Just totally at a loss what to say to help!
Janet, I've been reading your updates, but really don't know what to say.
(should have said something.... sorry!
)If it was me going through all of this I would be frantic, frustrated and depressed.
I do understand you not wanting to go to another health care team, but I also remember that, near the start of this thread, there are x-ray pics of your hip and Jo found problems in the way the bottom part fits into the bone..... And I read that everyone on the team is telling you there is nothing wrong with your (new) x-rays, and I still wonder....
Perhaps by now they really should be suggesting a revision, even though they can't see anything wrong. I thought it was usual practice to do so, but I guess not....
I am thinking of you.
Just totally at a loss what to say to help!
The Cappuccino Kid
graduate
Re: This is my story
Janet, like Suzie I really don't know what to say that doesn't sound like a platitude but I couldn't read and not post.
Thinking of you.
Janet, like Suzie I really don't know what to say that doesn't sound like a platitude but I couldn't read and not post.
Thinking of you.
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nanamac
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Re: This is my story
I have been paralyzed with fear of going thru this a third time. It seems to go from bad to worse with my luck. Can you honestly blame me for not wanting another revision? This was done at THE place for THR's in Boston! The best place around. Where Plymouth Witch had her's done.
I am seeing my GP on Monday and have decided to discuss another revision with her. She really is the one person who does go to bat for me. I know the OS can't find anything wrong, but I am now in severe pain. I have an appointment scheduled at the new Pain Clinic on 10/27 but I don't think it will accomplish much.
The problem here is, or a big problem is having to wait months to get an appointment anywhere today! Almost as bad as Canada I think. Then, you get in and seem to be rushed out with questions still unanswered. I honestly don't know where to turn or who to trust anymore.
I have read a lot on the internet about revisions for unexplained pain and the success rate is not all that impressive of having the pain gone after. And again the risk of fracture is there with another surgery.
Reading Special Lady's thread has been very motivating for me. It is what has been giving me the strength to push for another revision. She is right, life is too short to not be able to function. But again, it is the fear of things getting worse yet. I am an emotional wreck over this.
So, if I don't end up at a Trauma Center this weekend, I will discuss the revison with my GP and then go back to the OS. I can't do this anymore. It is taking way too much out of me. It is all comsuming right now and I am extremely depressed over it .
Sorry for being AWOL. I care about you, my buddies here so much but I have nothing to offer anybody at the moment. I'm a mess :cry4:...
I have been paralyzed with fear of going thru this a third time. It seems to go from bad to worse with my luck. Can you honestly blame me for not wanting another revision? This was done at THE place for THR's in Boston! The best place around. Where Plymouth Witch had her's done.
I am seeing my GP on Monday and have decided to discuss another revision with her. She really is the one person who does go to bat for me. I know the OS can't find anything wrong, but I am now in severe pain. I have an appointment scheduled at the new Pain Clinic on 10/27 but I don't think it will accomplish much.
The problem here is, or a big problem is having to wait months to get an appointment anywhere today! Almost as bad as Canada I think. Then, you get in and seem to be rushed out with questions still unanswered. I honestly don't know where to turn or who to trust anymore.
I have read a lot on the internet about revisions for unexplained pain and the success rate is not all that impressive of having the pain gone after. And again the risk of fracture is there with another surgery.
Reading Special Lady's thread has been very motivating for me. It is what has been giving me the strength to push for another revision. She is right, life is too short to not be able to function. But again, it is the fear of things getting worse yet. I am an emotional wreck over this.
So, if I don't end up at a Trauma Center this weekend, I will discuss the revison with my GP and then go back to the OS. I can't do this anymore. It is taking way too much out of me. It is all comsuming right now and I am extremely depressed over it .
Sorry for being AWOL. I care about you, my buddies here so much but I have nothing to offer anybody at the moment. I'm a mess :cry4:...
Juliep
graduate
Re: This is my story
Soooooo sorry to hear this all Janet. We all wish only the best for you and that you are rid of all this pain !!
Soooooo sorry to hear this all Janet. We all wish only the best for you and that you are rid of all this pain !!
ginger322
junior member
Re: This is my story
Hi Janet, I am so sorry to hear that you are still struggling with all this pain and uncertainty.
You probably need to get an opinion apart from your original OS. I too went to THE hospital in Boston, and while I was not at all as thrilled with their care as you were, I was very impressed by my OS who had to take some of the staff to task. I don't think Baptist is necessarily the culprit here.
You need an opinion from someone who did not operate on you.
Maybe find revisionist at Mass General. You PCP can certainly refer you to one there.
Good luck in your search for answers Janet. I think about you a lot.
Hi Janet, I am so sorry to hear that you are still struggling with all this pain and uncertainty.
You probably need to get an opinion apart from your original OS. I too went to THE hospital in Boston, and while I was not at all as thrilled with their care as you were, I was very impressed by my OS who had to take some of the staff to task. I don't think Baptist is necessarily the culprit here.
You need an opinion from someone who did not operate on you.
Maybe find revisionist at Mass General. You PCP can certainly refer you to one there.
Good luck in your search for answers Janet. I think about you a lot.
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nanamac
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Re: This is my story
Thanks Ginger. Although that is where I went for the initial surgery/fracture/revision, that is not where I have been currently going. It is an OS who teaches at a different renowned Boston Hospital, but who practices locally. He can't find a problem with my THR!
It is one of those unexplained thigh/femur pain issues, yet I know that my leg has never felt right since the first surgery. It just feels so unnatural. That is why I feel the stem was positioned wrong if that makes more sense.
To see me stand everything looks normal. But what it feels like to me is a whole different matter. All along I just thought it was the way it was supposed to feel after what I had gone thru. But now I don't think that at all after hearing how others would never know they had the surgery done.
There is a not a second in the day that I do not know that I had a THR. And that is not normal. And that being said, that is why I am so scared of going thru it again. What if I do and it is no different?
Thanks Ginger. Although that is where I went for the initial surgery/fracture/revision, that is not where I have been currently going. It is an OS who teaches at a different renowned Boston Hospital, but who practices locally. He can't find a problem with my THR!
It is one of those unexplained thigh/femur pain issues, yet I know that my leg has never felt right since the first surgery. It just feels so unnatural. That is why I feel the stem was positioned wrong if that makes more sense.
To see me stand everything looks normal. But what it feels like to me is a whole different matter. All along I just thought it was the way it was supposed to feel after what I had gone thru. But now I don't think that at all after hearing how others would never know they had the surgery done.
There is a not a second in the day that I do not know that I had a THR. And that is not normal. And that being said, that is why I am so scared of going thru it again. What if I do and it is no different?
beesquare
member
Re: This is my story
Janet I can think of nothing to say advice wise but I am so, so sorry that you are having all your pain and worry and really hope that some solution is found very very soon.
xxx
Janet I can think of nothing to say advice wise but I am so, so sorry that you are having all your pain and worry and really hope that some solution is found very very soon.
xxx
ginger322
junior member
Re: This is my story
Those are tough choices, Janet. You have to pursue it though. You WILL come out better on the other end of this. As you said, the status quo is unacceptible, especially if you are unable to refill your pain meds. Your PCP need to know how bad things are. I am sure she will take care of you in that regard.
You must be half crazy with the stress and the pain.
I am so sorry you have to go through this with everything else you have been through.
I am keeping you in my thoughts and praying for a good outcome.
Those are tough choices, Janet. You have to pursue it though. You WILL come out better on the other end of this. As you said, the status quo is unacceptible, especially if you are unable to refill your pain meds. Your PCP need to know how bad things are. I am sure she will take care of you in that regard.
You must be half crazy with the stress and the pain.
I am so sorry you have to go through this with everything else you have been through.
I am keeping you in my thoughts and praying for a good outcome.
Re: This is my story
I know this is tough for you, Janet. But you ask, "What if I have another revision and it's no better?" Hon, you know for CERTAIN that if you don't do something it will not get better, and likely may continue to get worse.
At least with a different revision surgeon....one you trust and who has excellent credentials.....you have a chance at getting back to a normal life.
I'm glad you are going to discuss another revision with your GP. I agree with Ginger that you might take a look at the revision surgeons at Mass General. I have reviewed the bios for several of their team and they sound very promising.
I know this is tough for you, Janet. But you ask, "What if I have another revision and it's no better?" Hon, you know for CERTAIN that if you don't do something it will not get better, and likely may continue to get worse.
At least with a different revision surgeon....one you trust and who has excellent credentials.....you have a chance at getting back to a normal life.
I'm glad you are going to discuss another revision with your GP. I agree with Ginger that you might take a look at the revision surgeons at Mass General. I have reviewed the bios for several of their team and they sound very promising.
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