Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Dear , The constellation of symptoms you have are giving you fits, and need to be addressed. First, my suggestion is to write everything down, have it on paper when you see him, and hit each question, and or symptom. I can go to waterworks if I'm frustrated, and have found having things written down at least gets me through the visit accomplishing what I wanted to get addressed. Second, you know your body, and if doesn't feel right, you know it. Don't let anyone pooh-pooh off how you are feeling. I'll give you an example. I had to do I.V. treatments of Aredia for osteoporosis, my doc's want my bone quality up since the don't want my hardware to move. So I go for my first treatment, an hour hooked up to an I.V. bag and then home. I did it on a friday, Friday night I'm vomitting, horrible muscle aches, and an unbelieveable headache, like the worst flu times ten. I call them on Monday, tell them what happened, no it's not the drug, you must have a virus. I kept saying I was fine when I came to you and now I'm violently sick. So I go the next month to have the treatment, doc says must have been a virus, that they do reams of this drug and NO ONE has ever had those symptoms. I get home from the treatment, and it starts all over again. My husband looks up the drug on the internet, and at the bottom of the side affects is vommitting and extreame headaches. He also finds that the drug they are giving me is for Breast Cancer that is going to the bone, although the doc did tell me that they were treating me like I had bone cancer, very aggressive treatment for the osteoporosis. So when I could call, I got the oncall guy, and he called my doc. I told him what we had found on the internet, and he finally agreed that it wasn't a virus but a major reaction to the drug. So to continue the drug, I had to get pretreatment of Benedryll, a pain reliever, and then after the med's were given two bags of I.V. Fluids. This got rid of most of the symptoms, but took my one hour treatment to six, and I still had to take for a couple of days after the treatment Celebrex for the headache. If he had just listened to me, had gotten that after all the surgeries, that I KNEW MY BODY, I wouldn't have had to gone through another bad reaction. If you don't feel like you are being listened to, or you are being pooh-poohed off, move on to another doc. Doc's can really make you feel like it's all in your head. Never hurts to have another doc take a look at whats going on, a fresh pair of eyes can't hurt. Colorado Springs [ ] explain this Hi all,Just a little frustrated today. I see the surgeon on Oct 4 for my six month follow up. I can not find the words to describe how I am feeling which is frustrating to no end. I do not want to go in there and sound like a blithering idiot because then I will cry because I am frustrated. How do describe a feeling of oh lets see..I don't feel like the rods are secure? It feels like they are not anchored and are floating about. I feel movement in my middle back and again down near the sacrum. My rod makes noises. The movement of the rod/muscle wall, etc, makes my nerves on the left side go beserk. I keep remembering after I had the first rod put in, people saying, if it hurts then don't do it. I think of that now and say, ya, OK, now don't move this way, you will hear that noise or feel that movement in your back. See...I sound like a blithering banana head. Ok signing off, I'm crying now. Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Dear , You have really been through a great deal. I wish there was something I could do or say....just know you are in our thoughts and we are in your corner. I hope the doctor can help you. If you cry, do not worry. You won't sound like a blithering banana head. AFter all you have been through, crying would be a completely normal, understandable response to the frustration! Before I went elsewhere and was diagnosed with flatback, I broke down on the table in front of our local orthopod (and I really did NOT want to cry) who was about to give me the umteenth injection of steroids in the SI joint. I really don't think he realized how despondent I was until that point. I am sure you must be frustrated at six months and still not getting the results you had hoped for. I just hope that the doctor can figure out what is causing all these symptoms. Hang in there! Martha Anne > > Hi all, > Just a little frustrated today. I see the surgeon on Oct 4 for my six > month follow up. I can not find the words to describe how I am feeling > which is frustrating to no end. I do not want to go in there and sound > like a blithering idiot because then I will cry because I am > frustrated. How do describe a feeling of oh lets see..I don't feel like > the rods are secure? It feels like they are not anchored and are > floating about. I feel movement in my middle back and again down near > the sacrum. My rod makes noises. The movement of the rod/muscle wall, > etc, makes my nerves on the left side go beserk. I keep remembering > after I had the first rod put in, people saying, if it hurts then don't > do it. I think of that now and say, ya, OK, now don't move this way, > you will hear that noise or feel that movement in your back. See...I > sound like a blithering banana head. Ok signing off, I'm crying now. > > Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 I don't want in any way to sound like I am saying you should not push, and get it checked, but I just do want to say again that my rods felt absolutely foreign for months. I felt movement, they creaked, a year out I tried to go back to light weight training and felt for all the world as though I was going to bend my back, rods and all despite that I was thoroughly fused as far as anyone could see. You could actually hear weird sounds from my back sometimes - I rolled over in bed and my husband freaked out because it was quiet enough that he heard the creaking, and I just blearily told him yes, that's what I mean when I say they're creaking and it feels like something moved between my shoulder blades!! I was just about convinced my body would never get used to the rods when all of a sudden, quite rapidly over just a few months, it did. These days I can pull 20 kg on the lat pulldown machine, and nothing at all moves. And I don't " feel " the heaviness and just the sense of there being too much crammed in there any more. At 12 months I was convinced I would either need a pseudoarthrosis repair or two, or to have the rods out, at 18 I was fine. Nothing that used to make me feel like I was going to somehow bend and then snap does now, it's all rock solid and comfortable. I know that probably sounds like a scarily long time, but I mean it more as hope - even if there are not many answers, it's surprising just how much really is " just healing " . All of that said, you should definitely bring all of your problems up. As has been suggested, write them down, even if the explanation you can give on it sounds daft, it doesn't matter - our docs are used to having to try to decipher almost inexplicable things that we can barely put words to, and so I would hope you'd be surprised by how much he's able to understand even if you don't think your descriptions are up to much. I would also hope that if nothing else, they can treat the nerve related discomfort you're having. I don't know if it is relevant as you're talking more about motion than sensation, but has mentioned on more than one occasion about re-sensitising your nerves, exposing the area that doesn't feel right to a variety of sensations and concentrating on how they should feel. This *really* helped me. I still have an area on my leg where if it's touched wrongly I just freak out, but it's pretty hard to get it wrongly these days. The other thing that I find helps jangling nerves, although it's not very practical if you don't either have double jointed shoulders or someone to reach for you, is pressure. When they set off on a good going zapping and jagging session with the muscle jumps and stuff, if I could, I put pressure on as strongly as possible - I think it's a bit like TENS in that it basically runs distraction on the bad sensations by overloading them. I wouldn't press directly on the spine, but most of the nasties were to one side, and they were fair game if I could reach them. It might also be worth keeping a notebook, make a shorthand or code for different nasties that you want to be rid of, and note when and with what intensity they happen. The very least is that it'll give a picture of how much this is getting in your way, which could be useful back up when dealing with the docs as it's a little more specific than just trying to remember roughly how often. It may also help you recognise patterns if there are any, which could be useful too. I really hope you can get some good answers and help. titch-- The wages of sin are death, but by the time taxes are taken out, it's just sort of a tired feeling - a Poundstone Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 , I am sorry you are hurting and crying ....I do hope that you can get some sense of where this is heading in October. If you feel like you are going to be emotional I think, as already suggested, writing down what you want to say is a great idea. Maybe even start the conversation by telling DrGlazer that you might well end up crying before its over, but that is just how it is going to be. I was looking for an old document and I stumbled onto a spine-health article I had saved on failed back sydrome. I bring this up not becasue I think you have a failed back situation, but rather because it speaks to the length of the recovery we all face: " Rehabilitation after spine surgery After an incorrect preoperative diagnosis and subsequent spine surgery, probably the second most common cause of failed back surgery syndrome is improper and/or inadequate postoperative rehabilitation. As stated earlier, it often takes months to a year to heal after many of these back surgeries, and a postoperative rehabilitation program that includes stretching, strengthening and conditioning is an important part of any successful spine surgery. In general, the bigger the back surgery, and the longer a patient has had their preoperative symptoms, the longer and harder the postoperative rehabilitation will be. It is often far more reasonable to continue with rehabilitation after spine surgery than to consider further surgery (with some exceptions, such as if there has been a recurrent disc herniation). " Here is the link to the full article....kind of interesting. Of course this stuff pertains to any back surgery so it is not necesarilly specific to us: http://www.spine- health.com/topics/surg/failed_back/failed_back01.html I know that which Titch speaks of...that all of a sudden feeling more solid, or whatever it was, didn't come til closer to a year for me. I do hope things improve for you soon. Trust yourself. Take Care, Cam Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Your right, no one knows it better than me. I have it all written down and hopefully, they can explain my difficulties. We thought originally in time it would pass but it has not. > > Dear , > > The constellation of symptoms you have are giving you fits, and need to be addressed. First, my suggestion is to write everything down, have it on paper when you see him, and hit each question, and or symptom. I can go to waterworks if I'm frustrated, and have found having things written down at least gets me through the visit accomplishing what I wanted to get addressed. > > Second, you know your body, and if doesn't feel right, you know it. Don't let anyone pooh-pooh off how you are feeling. I'll give you an example. I had to do I.V. treatments of Aredia for osteoporosis, my doc's want my bone quality up since the don't want my hardware to move. So I go for my first treatment, an hour hooked up to an I.V. bag and then home. I did it on a friday, Friday night I'm vomitting, horrible muscle aches, and an unbelieveable headache, like the worst flu times ten. I call them on Monday, tell them what happened, no it's not the drug, you must have a virus. I kept saying I was fine when I came to you and now I'm violently sick. So I go the next month to have the treatment, doc says must have been a virus, that they do reams of this drug and NO ONE has ever had those symptoms. I get home from the treatment, and it starts all over again. My husband looks up the drug on the internet, and at the bottom of the side affects is vommitting and extreame headaches. He also finds that the drug they are giving me is for Breast Cancer that is going to the bone, although the doc did tell me that they were treating me like I had bone cancer, very aggressive treatment for the osteoporosis. So when I could call, I got the oncall guy, and he called my doc. I told him what we had found on the internet, and he finally agreed that it wasn't a virus but a major reaction to the drug. So to continue the drug, I had to get pretreatment of Benedryll, a pain reliever, and then after the med's were given two bags of I.V. Fluids. This got rid of most of the symptoms, but took my one hour treatment to six, and I still had to take for a couple of days after the treatment Celebrex for the headache. If he had just listened to me, had gotten that after all the surgeries, that I KNEW MY BODY, I wouldn't have had to gone through another bad reaction. > > If you don't feel like you are being listened to, or you are being pooh-poohed off, move on to another doc. Doc's can really make you feel like it's all in your head. Never hurts to have another doc take a look at whats going on, a fresh pair of eyes can't hurt. > > > Colorado Springs > [ ] explain this > > > Hi all, > Just a little frustrated today. I see the surgeon on Oct 4 for my six > month follow up. I can not find the words to describe how I am feeling > which is frustrating to no end. I do not want to go in there and sound > like a blithering idiot because then I will cry because I am > frustrated. How do describe a feeling of oh lets see..I don't feel like > the rods are secure? It feels like they are not anchored and are > floating about. I feel movement in my middle back and again down near > the sacrum. My rod makes noises. The movement of the rod/muscle wall, > etc, makes my nerves on the left side go beserk. I keep remembering > after I had the first rod put in, people saying, if it hurts then don't > do it. I think of that now and say, ya, OK, now don't move this way, > you will hear that noise or feel that movement in your back. See...I > sound like a blithering banana head. Ok signing off, I'm crying now. > > Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Thanks Martha Anne, At this point even my hunnie thinks I'm nuts but I feel what I feel and that is what I will tell the doc. > > > > Hi all, > > Just a little frustrated today. I see the surgeon on Oct 4 for my > six > > month follow up. I can not find the words to describe how I am > feeling > > which is frustrating to no end. I do not want to go in there and > sound > > like a blithering idiot because then I will cry because I am > > frustrated. How do describe a feeling of oh lets see..I don't feel > like > > the rods are secure? It feels like they are not anchored and are > > floating about. I feel movement in my middle back and again down > near > > the sacrum. My rod makes noises. The movement of the rod/muscle > wall, > > etc, makes my nerves on the left side go beserk. I keep > remembering > > after I had the first rod put in, people saying, if it hurts then > don't > > do it. I think of that now and say, ya, OK, now don't move this > way, > > you will hear that noise or feel that movement in your back. > See...I > > sound like a blithering banana head. Ok signing off, I'm crying > now. > > > > > Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Titch, Your post was very helpful. If I could explain it word for word, I would say that if my hips are even a tiny bit out of alignment as in say, I forget to move both legs at the same time getting in and out of the car then, I feel something move either in the middle of my back or the top of the tail bone. Then all the nerves on the left side tingle all at once. I have to take a deep breath to let it pass but the tingling doesn't pass. It either goes to a dull roar or full blown. I never enjoy anything because it is always present. I think it even puts a rawness at the back of my throat though I am being treated for reflux. 1 1/2 months on meds for it no change. But when this back thing happens and the nerves go nuts the back of the throat goes bellistic too. Anyway, that is as close as I can come to explaining it. Thanks, > > I don't want in any way to sound like I am saying you should not push, and > get it checked, but I just do want to say again that my rods felt absolutely > foreign for months. I felt movement, they creaked, a year out I tried to go > back to light weight training and felt for all the world as though I was > going to bend my back, rods and all despite that I was thoroughly fused as > far as anyone could see. You could actually hear weird sounds from my back > sometimes - I rolled over in bed and my husband freaked out because it was > quiet enough that he heard the creaking, and I just blearily told him yes, > that's what I mean when I say they're creaking and it feels like something > moved between my shoulder blades!! > > I was just about convinced my body would never get used to the rods when all > of a sudden, quite rapidly over just a few months, it did. These days I can > pull 20 kg on the lat pulldown machine, and nothing at all moves. And I > don't " feel " the heaviness and just the sense of there being too much > crammed in there any more. At 12 months I was convinced I would either need > a pseudoarthrosis repair or two, or to have the rods out, at 18 I was fine. > Nothing that used to make me feel like I was going to somehow bend and then > snap does now, it's all rock solid and comfortable. I know that probably > sounds like a scarily long time, but I mean it more as hope - even if there > are not many answers, it's surprising just how much really is " just > healing " . > > All of that said, you should definitely bring all of your problems up. As > has been suggested, write them down, even if the explanation you can give on > it sounds daft, it doesn't matter - our docs are used to having to try to > decipher almost inexplicable things that we can barely put words to, and so > I would hope you'd be surprised by how much he's able to understand even if > you don't think your descriptions are up to much. > > I would also hope that if nothing else, they can treat the nerve related > discomfort you're having. I don't know if it is relevant as you're talking > more about motion than sensation, but has mentioned on more than one > occasion about re-sensitising your nerves, exposing the area that doesn't > feel right to a variety of sensations and concentrating on how they should > feel. This *really* helped me. I still have an area on my leg where if > it's touched wrongly I just freak out, but it's pretty hard to get it > wrongly these days. The other thing that I find helps jangling nerves, > although it's not very practical if you don't either have double jointed > shoulders or someone to reach for you, is pressure. When they set off on a > good going zapping and jagging session with the muscle jumps and stuff, if I > could, I put pressure on as strongly as possible - I think it's a bit like > TENS in that it basically runs distraction on the bad sensations by > overloading them. I wouldn't press directly on the spine, but most of the > nasties were to one side, and they were fair game if I could reach them. > > It might also be worth keeping a notebook, make a shorthand or code for > different nasties that you want to be rid of, and note when and with what > intensity they happen. The very least is that it'll give a picture of how > much this is getting in your way, which could be useful back up when dealing > with the docs as it's a little more specific than just trying to remember > roughly how often. It may also help you recognise patterns if there are > any, which could be useful too. > > I really hope you can get some good answers and help. > > titch > > -- > The wages of sin are death, but by the time taxes are taken out, it's just > sort of a tired feeling - a Poundstone > Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Thanks Cam the articles were helpful. Though I can't find any explain ation of these symptoms. I understand time and lots of therapy will bring a healthy results. Hopefully, it is inflammation and will pass. > > , > > I am sorry you are hurting and crying ....I do hope that you can get > some sense of where this is heading in October. If you feel like you > are going to be emotional I think, as already suggested, writing > down what you want to say is a great idea. Maybe even start the > conversation by telling DrGlazer that you might well end up crying > before its over, but that is just how it is going to be. > > I was looking for an old document and I stumbled onto a spine- health > article I had saved on failed back sydrome. I bring this up not > becasue I think you have a failed back situation, but rather because > it speaks to the length of the recovery we all face: > > " Rehabilitation after spine surgery > After an incorrect preoperative diagnosis and subsequent spine > surgery, probably the second most common cause of failed back > surgery syndrome is improper and/or inadequate postoperative > rehabilitation. As stated earlier, it often takes months to a year > to heal after many of these back surgeries, and a postoperative > rehabilitation program that includes stretching, strengthening and > conditioning is an important part of any successful spine surgery. > > In general, the bigger the back surgery, and the longer a patient > has had their preoperative symptoms, the longer and harder the > postoperative rehabilitation will be. It is often far more > reasonable to continue with rehabilitation after spine surgery than > to consider further surgery (with some exceptions, such as if there > has been a recurrent disc herniation). " > > Here is the link to the full article....kind of interesting. Of > course this stuff pertains to any back surgery so it is not > necesarilly specific to us: > > http://www.spine- > health.com/topics/surg/failed_back/failed_back01.html > > I know that which Titch speaks of...that all of a sudden feeling > more solid, or whatever it was, didn't come til closer to a year for > me. > > I do hope things improve for you soon. Trust yourself. > > Take Care, Cam > Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 I hope the surgeon puts you're mind at ease when trying to explain what you are feeling or hearing, I often have a hard time describing what I feel but maybe there is someone in this group that can help put it in better words I know it can be dificult finding the right words to describe what we feel. It reminds me of some people when they take there car for repair and try to describe a particular noise when knoing verry litle about about car trouble. Like cam said try writing down what you're feeling at the time you are feeling it and take the notes with you. Take care Franca > > Hi all, > Just a little frustrated today. I see the surgeon on Oct 4 for my six > month follow up. I can not find the words to describe how I am feeling > which is frustrating to no end. I do not want to go in there and sound > like a blithering idiot because then I will cry because I am > frustrated. How do describe a feeling of oh lets see..I don't feel like > the rods are secure? It feels like they are not anchored and are > floating about. I feel movement in my middle back and again down near > the sacrum. My rod makes noises. The movement of the rod/muscle wall, > etc, makes my nerves on the left side go beserk. I keep remembering > after I had the first rod put in, people saying, if it hurts then don't > do it. I think of that now and say, ya, OK, now don't move this way, > you will hear that noise or feel that movement in your back. See...I > sound like a blithering banana head. Ok signing off, I'm crying now. > > Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Hi ... Odds are that nothing is wrong, but don’t rule out the possibility that something is, indeed, wrong. I don’t think I’ve heard very many (if any) people describe that their implants feel loose. I hope that’s not the case, but at least it would explain what you’re feeling. Good luck! Regards, > > Hi all, > Just a little frustrated today. I see the surgeon on Oct 4 for my six > month follow up. I can not find the words to describe how I am feeling > which is frustrating to no end. I do not want to go in there and sound > like a blithering idiot because then I will cry because I am > frustrated. How do describe a feeling of oh lets see..I don't feel like > the rods are secure? It feels like they are not anchored and are > floating about. I feel movement in my middle back and again down near > the sacrum. My rod makes noises. The movement of the rod/muscle wall, > etc, makes my nerves on the left side go beserk. I keep remembering > after I had the first rod put in, people saying, if it hurts then don't > do it. I think of that now and say, ya, OK, now don't move this way, > you will hear that noise or feel that movement in your back. See...I > sound like a blithering banana head. Ok signing off, I'm crying now. > > Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 , Ooops...maybe I wasn't clear...I didn't really think the passage I copied applied specifically to what you are feeling....just confirming that, in fact, the bigger the surgery the longer the healing timeline and that healing may take you another year at minimum. I do hope nothing is actually loose and you are just hearing tendons going THWANG over bone! As says...follow up on your feeings until you are satisfied! Take Care, Cam Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Thanks Franca, That is right a good comparison is car repair. Ha. > > > > Hi all, > > Just a little frustrated today. I see the surgeon on Oct 4 for my > six > > month follow up. I can not find the words to describe how I am > feeling > > which is frustrating to no end. I do not want to go in there and > sound > > like a blithering idiot because then I will cry because I am > > frustrated. How do describe a feeling of oh lets see..I don't feel > like > > the rods are secure? It feels like they are not anchored and are > > floating about. I feel movement in my middle back and again down > near > > the sacrum. My rod makes noises. The movement of the rod/muscle > wall, > > etc, makes my nerves on the left side go beserk. I keep > remembering > > after I had the first rod put in, people saying, if it hurts then > don't > > do it. I think of that now and say, ya, OK, now don't move this > way, > > you will hear that noise or feel that movement in your back. > See...I > > sound like a blithering banana head. Ok signing off, I'm crying > now. > > > > > Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Cam, Don't worry, I didn't take it the wrong way. Thanks, > > , > > Ooops...maybe I wasn't clear...I didn't really think the passage I > copied applied specifically to what you are feeling....just confirming > that, in fact, the bigger the surgery the longer the healing timeline > and that healing may take you another year at minimum. I do hope > nothing is actually loose and you are just hearing tendons going > THWANG over bone! > > As says...follow up on your feeings until you are satisfied! > > Take Care, Cam > Quote
Guest guest Posted September 20, 2006 Report Posted September 20, 2006 Hi , I wish you could get an X-Ray or CT tomorrow so that you could at least know! Not knowing and wondering is so tough. Isn't it? I am preparing to see Rand tomorrow and have spent the last couple of weeks trying to think of ways to describe my pain. Describing pain is so hard. I never really got with that 1 to 10 scale. I can remember those first days post op answering 25. The nurses knew I was getting better when I said 13. In my mind I operate between 5 to 7 ...a 3 on a really good day. So post op pain was (for me) a 25. I keep grabbing at the spot in my hip when the pain kicks up at the end of the med cycle. I want to be able to point exactly. I've even thought about using a Sharpie and marking a big ( & %$^# & *) X . No kidding. Anyway, I agree with others that writing it down is a good idea. I think I will try to do that tonight. I think Franca is right - you get in that office and it is like a car. Crying is NOT bad. Sometimes that's what it takes. Take care, Ann Quote
Guest guest Posted September 20, 2006 Report Posted September 20, 2006 Ann...Why not use the red sharpie? A big old red X marks the spot could be a good graphic. Last time through for me, DrRand taped a paperclip of the prominent spot on my spine to see if it correlated with the implant.....and back down for another xray. Very low tech but effective way of determining if what I was feeling was actually a piece of what was put in there. It doesn't make it feel any different...but just knowing what it is eases my mind. Take Care, Cam > > Hi , > I wish you could get an X-Ray or CT tomorrow so that you could at > least know! Not knowing and wondering is so tough. Isn't it? > > I am preparing to see Rand tomorrow and have spent the last couple of > weeks trying to think of ways to describe my pain. Describing pain is > so hard. I never really got with that 1 to 10 scale. I can remember > those first days post op answering 25. The nurses knew I was getting > better when I said 13. In my mind I operate between 5 to 7 ...a 3 on a > really good day. So post op pain was (for me) a 25. > > I keep grabbing at the spot in my hip when the pain kicks up at the > end of the med cycle. I want to be able to point exactly. I've even > thought about using a Sharpie and marking a big ( & %$^# & *) X . No kidding. > > Anyway, I agree with others that writing it down is a good idea. I > think I will try to do that tonight. I think Franca is right - you get > in that office and it is like a car. Crying is NOT bad. Sometimes > that's what it takes. > > Take care, > Ann > Quote
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