Re: Re: Meloxicam / Mobic -Scoliosis Overcompensation Syndrome

[Guest guest]

Thank you, ,

I shed a few tears as I read your letter. Especially, as Bonnie said, the "SUCKING IT UP" line.

I had previously read the Mina piece on Scoliosis Overcompensation Syndrome, but I went back and read it again. My surgery was done in 1979, so the traction treatments didn't happen, but I definitely had the most pain I'd ever experienced in my life. And toward the end of my hospital stay I must've got scared about going home, so had a type of panic attack, got very sick, throwing up, etc. Part of it was physical since the meds they were giving me were counterproductive. (can't remember exactly what, but milk of mag was one of them, stool softeners the other, I think). Anyway, I remember also an intern I knew teased me that I would be lying naked while getting casted...not what a 14 year old wants to hear. Talk about fear. So when I went in to get casted (in a body sock, not naked), I was an emotional wreck. I cried when they ripped out the wire stitches. The dr. chastised me. I "sucked it up". It was after the cast was on that I got very sick and ended up staying an extra day in the hospital. SOooo, all that to say that despite not having the trauma of traction, I still experienced trauma.

So I just reread the article. It struck me this time just how much it describes me. When she got to the list of 12 symptoms of Scoliosis Overcompensation Syndrome, at first I thought not many applied...then I went back and counted: 8 out of 12. Wow! 2/3. And the physical description about dressing to hide the deformity really fits me. I was floored when I first read that girls' breasts had been crushed in the plaster casts...I had always wondered why mine were so strange looking. My husband had hypothesized a few years back that it could have been the cast. There is no upper bulk to mine, only off to the side and a little below. So much so that the mammogram specialist commented that they were a bit "thin" for fitting in the machine. My husband and I had some good laughs over that polite terminology.

I think another thing for me is that I do look fine. Unless you are looking for it, you cannot see that my shoulders and hips are uneven. And, like you said, the dr. told us I was healed. For life. That was very final. My parents heard it. I heard it. So it is even hard for me to believe and accept that I DO have a debilitating condition. I'm learning to accept my limitations. I don't respond with "good" anymore when people ask "how are you doing?" I respond with a deliberate, "I'm okay." Unless, of course I'm in bad pain, then it's "I'm managing" or "I've had better days."

By the way, , your last line, especially the part "never beat yourself up about not doing enough, you are doing all you can, and thats enough" was very encouraging. When I was seeing a psychologist years ago for what turned out to be panic attacks brought on through irritable bowel syndrome, she used to tell me that I wouldn't blame, for example, my brother with Crohn's disease, for his symptoms...so I need to give myself the grace I would give him. I think it applies even more so to the scoliosis issues. I need to learn to moderate, as you said, my activities.

I'm still not sure how to educate my extended family, as they are very resistant, but I think they are truly generous people, and will eventually figure it out if they see my kids and husband responding to me. My mother was there for me after my difficult appointment the other day, although a bit distant, as though bewildered. She has always tried to help me by sending home leftovers after Sunday dinner, etc., not because of my back, but because she can't imagine how I can homeschool 5 kids. I just don't want to paint my family in such a bad way. I think they are just in as much denial about the scoliosis stuff as I have been.

Well, I'm just starting to go on and on. Sorry. Again, thank you for helping me sort all this out and gain some perspective.

I hope you all have a blessed Christmas!

Diane VDW

Michigan

Diane,

Something spoken about here often is how those around us, especially after the onset of Flatback, just don't get our pain and disability. Many of us like you are type A personalities, and have gone and did till our bodies and spines just say whoa. It's also tough for those who were around us during our GOOD years to understand the wear and tear on our spines below our long fusion masses, that may hit ten, twenty or even thirty years later. My parents really didn't get it for a good long time because they were told after my Harrington Rod surgery I was healed, so when I started to fall apart they plain didn't get it, after all a doctor told them I was healed. The best thing I did was to print off decriptions of Flatback from the net, and give them to read. The it was as if a light bulb went on, the understanding was there. My Mom did feel some guilt about the surgery, that their decision had put me where I was, and I had to assure her, the Harrington Rod surgery was cutting edge at it's time, and without it I truly would have been wheelchair bound as my curves were so big. They did the best for us at the time.

In the files section is an excellent article written by Mina, a fellow Flatbacker, who went through revision far earlier than me, titled Scoliosis Overcompensation syndrome. Please read it, you will probably find yourself there, I sure did.

Know if you are in pain and dealing with daily life, you are already SUCKING IT UP, and your family is completely wrong. You will have to slow down, ask for help, and moderate your day around your pain. There is no sin in asking for help or understanding, afterall you have a dibilitating spinal condition. I'm so lucky, my surgeon Anant Kumar was VERY plain with my family as to the affects of Flatback, and that I would need help. I'm so glad that after my surgeries with him I lead a very productive life, but it took time and work on both our parts.

Pacing your day is important, you will soon learn just what will send you into a really painful episode, and you moderate. Before surgery, I knew I could go to one store and shop a little bit, if I was careful to sit about every 15 minutes, but there was no way I could go to two stores, that would put me over the edge, and I'd pay for it. Be kind to your body. If your family is made aware, by giving them the information and making sure they read it, they will become your protectors. My kids are the best about it, they automatically do things I have difficulty with, and chastize me if I try to do them, as they want this surgery to last and last, and for me to have years and years of quality living. I think the biggest lesson learned by my Harrington Rod past is that our spines have been worked on so many times that we have to keep our good outcomes from revision close to our hearts, and live our lives in ways as to not compromise that good outcome. After all those years of disability while in Flatback, I'm all the more appreciative of being able to walk and stand as much as I'd like, and not being in daily pain, it's such a gift.

You do what you need to do to keep yourself as comfortable as possible, educate your family, and never beat yourself up about not doing enough, you are doing all you can, and thats enough.

Colorado Springs

____________________________________________________________

Click for free info on college degrees.

[Guest guest]

Diane,

I can relate to alot of what you said, I have been there in more ways than one. Let me say first, that while going through scoliosis related problems yet again all these years later, have hope, and know, there is improvement in care, and there is hope for a better day. I'm six years out from my last revision, and doing very well, and my best advice is, take all this a day at a time, be a learner and a teacher, and you will find your way. You are at one of the most difficult parts of the journey, finding the right doctor for you. It's also tough to realize hey, I'm not okay, this hurts, cause it's easy to deny Flatbacks affects, as for some of us it gradually increases, and it's not till it hit hard enough that managing your day is affected, that you and others get something is awfully wrong. I bet those around you notice, they are just either in denial, or too kind to point it out. After my diagnosis, and reading reams of stuff on the net, I saw myself physically in the pictures there, and the physical descriptions. I didn't even realize I hadn't been to a mall in years, because if a store didn't have shopping carts for me to lean on while shopping, I didn't go there, just had stopped, and I didn't know why till I read it, and a light bulb came on and I said " Thats me". I then began to ask my friends how I looked, and why they said nothing, they thought I knew I was cast forward, and they told me they could see the pain on my face, and just didn't want to bring it up in fear it would hurt me. It's amazing how we adjust through time to are dwindling abilities, one year I could walk around the block, the next to the corner, the next only to the mailbox. I didn't get how bad it had gotten till the cascade of symptoms has gotten so great it really smacked me in the face and got me to a doctor yet again. I was symptomatic for 15 years, and while I did search out answers and doc's for many of those years, and got none, what drove me to a doc yet again was just awful pain after helping a neighbor move, just packing boxes mind you. I feel at that point I was in the right place at the right time, and through a weird chain of events, got to my doctor and diagnosis, and surgery that helped me get my life back.

I was extreamly lucky back when my Harrington Was placed, I wasn't in put in Traction or even casted, I just had a brace, really, really lucky, back in 1973. I was put into a cast to make a mold for my brace. So here's trauma I can relate to with your story. After surgery they didn't get me up until I went to the casting room , at about ten days post op. Two interns got me up off the gurney, and of course I was dizzy and weak, stood me up, and yes naked, and of course I had my period, so there I was, naked, with one of those awful sanitary pads of those days and the awful belt we used with them. Humilitating. They didn't use one of those body stockings, they used some kind of strips of cloth, that they circled my torso with. I was so dizzy, that when the plaster heated up, they had to hit the base of my neck with a little plastic hammer to keep me from passing out. I was so out of it, that I kept telling one of the very young interns how cute he was, something my normal shy person would have never done. It was one of the worse experiences of my young 14 year old life, and I'll never forget it. Thankfully after revision I have no awful stories like that!!!!!

I think many of us have traumatic affects from our Harrington Rod surgeries that color our pursuit for care all these years later. For me, I was very worried about pain control following revision surgery, as after my Harrington Rod surgery, my pain was very out of control, and I remember often that last half an hour before the SHOT was to be administered, and begging the nurse for the shot. I also remember the God awful pain when they lifted me from the gurney and put me into my hospital bed back then, the worst pain I have ever felt, and I have had three spinal surgeries since then, none even compared. I'm so glad to say that today pain mgt is sooooo vastly better, sure surgery hurts and is painful, but nothing like back then, at least for me.

As to family, it's a process. You might need to have a family meeting, to discuss. You can always have family members ask us questions, so they can get it right from the horses mouth. I help patients of my doctor who are about to have the surgery, have answered just about every question imaginable, sometimes it helps to talk it out. Living with Flatback is tough, but living with it without understanding is even tougher. Know we are there to support you , and all of us in one way or another have had a family member or a friend who plain doesn't get it, it takes patience and education to deal with these people, and some will always be a work in progress. It's always amazing that in families alot of the time, we are kinder and more understanding of a stranger than we are of a family member, that whole pull yourself up by the bootstraps mentality, or suck it up. They would never say that to a stranger who had a malady. It sucks that while you have a debilitating condition you have to teach them, but how else will they understand. Once my Mom got it, after quite a bit of teaching and her reading material I printed for her, she actually set a friend straight who said an off the cuff comment about my condition. This gal was a retired nurse, and Mom was telling her about one of my impending surgeries, and she said" they put thousands of those Harrington Rods inback in the day, and I've never heard of any problems with them". So Mom quoted things from what she read, and this gal was amazed to learn what she did, and made the comment, boy you sure know a lot about this, and Mom said" It's only because my daughter gave me the information and I wanted to know how to help her". I think we are lucky to be in the time frame we are in, information is as available as a click of the mouse on a computer, there are support groups, and doctors treat us now as partners in our own care. It's amazing how far we have come, that while we have a condition thats care has had to spread over 10, 20 or 30 years, we can see and experience just how far medical care has progressed.

See you are SUCKING IT UP, five kids, and you home school them, WOW, if that isn't sucking it up, I don't know what is, most normal spined people wouldn't attempt that! So life goes on, even with a compromised spine, you just learn how to manage your day around your pain, and get on with it. Also you continue your quest to find your answers, and find a doc who can help you. Journeys aren't accomplished in a day, and all this is more like a marathon than a sprint, and you will find your way through it. I do believe from what I have been through in my scoliosis journey has made me a better more understanding person, improved me. I think all of us walk in a far greater understanding of those around us from our hardships. Thats the gift of scoliosis, if you can look at it as a gift. Everyone will have something, sometime in their lives medically, and how we handle it determines our outlook.Just know it's hard, a bit unfair, but you will get through it. You are lucky, you have family, and friends, and they with a little education be there for you. Us scoli guys and gals are tough people, determined, focused, and know how to fight to get whats best for us. You will find your answers. I did, and many here too.

Colorado Springs

Re: [ ] Re: Meloxicam / Mobic -Scoliosis Overcompensation Syndrome

Thank you, ,

I shed a few tears as I read your letter. Especially, as Bonnie said, the "SUCKING IT UP" line.

I had previously read the Mina piece on Scoliosis Overcompensation Syndrome, but I went back and read it again. My surgery was done in 1979, so the traction treatments didn't happen, but I definitely had the most pain I'd ever experienced in my life. And toward the end of my hospital stay I must've got scared about going home, so had a type of panic attack, got very sick, throwing up, etc. Part of it was physical since the meds they were giving me were counterproductive. (can't remember exactly what, but milk of mag was one of them, stool softeners the other, I think). Anyway, I remember also an intern I knew teased me that I would be lying naked while getting casted...not what a 14 year old wants to hear. Talk about fear. So when I went in to get casted (in a body sock, not naked), I was an emotional wreck. I cried when they ripped out the wire stitches. The dr. chastised me. I "sucked it up". It was after the cast was on that I got very sick and ended up staying an extra day in the hospital. SOooo, all that to say that despite not having the trauma of traction, I still experienced trauma.

So I just reread the article. It struck me this time just how much it describes me. When she got to the list of 12 symptoms of Scoliosis Overcompensation Syndrome, at first I thought not many applied...then I went back and counted: 8 out of 12. Wow! 2/3. And the physical description about dressing to hide the deformity really fits me. I was floored when I first read that girls' breasts had been crushed in the plaster casts...I had always wondered why mine were so strange looking. My husband had hypothesized a few years back that it could have been the cast. There is no upper bulk to mine, only off to the side and a little below. So much so that the mammogram specialist commented that they were a bit "thin" for fitting in the machine. My husband and I had some good laughs over that polite terminology.

I think another thing for me is that I do look fine. Unless you are looking for it, you cannot see that my shoulders and hips are uneven. And, like you said, the dr. told us I was healed. For life. That was very final. My parents heard it. I heard it. So it is even hard for me to believe and accept that I DO have a debilitating condition. I'm learning to accept my limitations. I don't respond with "good" anymore when people ask "how are you doing?" I respond with a deliberate, "I'm okay." Unless, of course I'm in bad pain, then it's "I'm managing" or "I've had better days."

By the way, , your last line, especially the part "never beat yourself up about not doing enough, you are doing all you can, and thats enough" was very encouraging. When I was seeing a psychologist years ago for what turned out to be panic attacks brought on through irritable bowel syndrome, she used to tell me that I wouldn't blame, for example, my brother with Crohn's disease, for his symptoms...so I need to give myself the grace I would give him. I think it applies even more so to the scoliosis issues. I need to learn to moderate, as you said, my activities.

I'm still not sure how to educate my extended family, as they are very resistant, but I think they are truly generous people, and will eventually figure it out if they see my kids and husband responding to me. My mother was there for me after my difficult appointment the other day, although a bit distant, as though bewildered. She has always tried to help me by sending home leftovers after Sunday dinner, etc., not because of my back, but because she can't imagine how I can homeschool 5 kids. I just don't want to paint my family in such a bad way. I think they are just in as much denial about the scoliosis stuff as I have been.

Well, I'm just starting to go on and on. Sorry. Again, thank you for helping me sort all this out and gain some perspective.

I hope you all have a blessed Christmas!

Diane VDW

Michigan

Diane,

Something spoken about here often is how those around us, especially after the onset of Flatback, just don't get our pain and disability. Many of us like you are type A personalities, and have gone and did till our bodies and spines just say whoa. It's also tough for those who were around us during our GOOD years to understand the wear and tear on our spines below our long fusion masses, that may hit ten, twenty or even thirty years later. My parents really didn't get it for a good long time because they were told after my Harrington Rod surgery I was healed, so when I started to fall apart they plain didn't get it, after all a doctor told them I was healed. The best thing I did was to print off decriptions of Flatback from the net, and give them to read. The it was as if a light bulb went on, the understanding was there. My Mom did feel some guilt about the surgery, that their decision had put me where I was, and I had to assure her, the Harrington Rod surgery was cutting edge at it's time, and without it I truly would have been wheelchair bound as my curves were so big. They did the best for us at the time.

In the files section is an excellent article written by Mina, a fellow Flatbacker, who went through revision far earlier than me, titled Scoliosis Overcompensation syndrome. Please read it, you will probably find yourself there, I sure did.

Know if you are in pain and dealing with daily life, you are already SUCKING IT UP, and your family is completely wrong. You will have to slow down, ask for help, and moderate your day around your pain. There is no sin in asking for help or understanding, afterall you have a dibilitating spinal condition. I'm so lucky, my surgeon Anant Kumar was VERY plain with my family as to the affects of Flatback, and that I would need help. I'm so glad that after my surgeries with him I lead a very productive life, but it took time and work on both our parts.

Pacing your day is important, you will soon learn just what will send you into a really painful episode, and you moderate. Before surgery, I knew I could go to one store and shop a little bit, if I was careful to sit about every 15 minutes, but there was no way I could go to two stores, that would put me over the edge, and I'd pay for it. Be kind to your body. If your family is made aware, by giving them the information and making sure they read it, they will become your protectors. My kids are the best about it, they automatically do things I have difficulty with, and chastize me if I try to do them, as they want this surgery to last and last, and for me to have years and years of quality living. I think the biggest lesson learned by my Harrington Rod past is that our spines have been worked on so many times that we have to keep our good outcomes from revision close to our hearts, and live our lives in ways as to not compromise that good outcome. After all those years of disability while in Flatback, I'm all the more appreciative of being able to walk and stand as much as I'd like, and not being in daily pain, it's such a gift.

You do what you need to do to keep yourself as comfortable as possible, educate your family, and never beat yourself up about not doing enough, you are doing all you can, and thats enough.

Colorado Springs____________________________________________________________ Click for free info on college degrees.

[Guest guest]

Dear ,

Wow! You went through sooo much!

I do think you are right about the gift of scoliosis, too. I am a far more compassionate person than I'm sure I would be otherwise. My kids call me a "needy person magnet." It's funny since I also see myself as needy at times. I can feel for those who struggle.

I also agree with the day at a time philosophy. I sometimes sing the old Christy Lane song "One Day At A Time" when I'm really feeling inadequate to deal with life. Dealing with each moment and one thing at a time really helps me, not only with the scoliosis stuff, but all of life, since the real constant pain only has come on in the last couple of months. I am thankful to be finding out so much about Harrington complications so soon after the pain became my companion because I don't think I'd have survived 15 years of pain like you have.

I am getting through the holidays and hoping my insurance will let me go forward with phys. therapy and a visit to Dr. Kasten. I will begin follow-up on my records and visits after the holidays. Right now my sister and family are here staying with my parents for a short visit, so I need to devote my energy to that.

Again, I can't thank you all enough for your care.

Diane VDW

Michigan

Diane,

I can relate to alot of what you said, I have been there in more ways than one. Let me say first, that while going through scoliosis related problems yet again all these years later, have hope, and know, there is improvement in care, and there is hope for a better day. I'm six years out from my last revision, and doing very well, and my best advice is, take all this a day at a time, be a learner and a teacher, and you will find your way. You are at one of the most difficult parts of the journey, finding the right doctor for you. It's also tough to realize hey, I'm not okay, this hurts, cause it's easy to deny Flatbacks affects, as for some of us it gradually increases, and it's not till it hit hard enough that managing your day is affected, that you and others get something is awfully wrong. I bet those around you notice, they are just either in denial, or too kind to point it out. After my diagnosis, and reading reams of stuff on the net, I saw myself physically in the pictures there, and the physical descriptions. I didn't even realize I hadn't been to a mall in years, because if a store didn't have shopping carts for me to lean on while shopping, I didn't go there, just had stopped, and I didn't know why till I read it, and a light bulb came on and I said " Thats me". I then began to ask my friends how I looked, and why they said nothing, they thought I knew I was cast forward, and they told me they could see the pain on my face, and just didn't want to bring it up in fear it would hurt me. It's amazing how we adjust through time to are dwindling abilities, one year I could walk around the block, the next to the corner, the next only to the mailbox. I didn't get how bad it had gotten till the cascade of symptoms has gotten so great it really smacked me in the face and got me to a doctor yet again. I was symptomatic for 15 years, and while I did search out answers and doc's for many of those years, and got none, what drove me to a doc yet again was just awful pain after helping a neighbor move, just packing boxes mind you. I feel at that point I was in the right place at the right time, and through a weird chain of events, got to my doctor and diagnosis, and surgery that helped me get my life back.

I was extreamly lucky back when my Harrington Was placed, I wasn't in put in Traction or even casted, I just had a brace, really, really lucky, back in 1973. I was put into a cast to make a mold for my brace. So here's trauma I can relate to with your story. After surgery they didn't get me up until I went to the casting room , at about ten days post op. Two interns got me up off the gurney, and of course I was dizzy and weak, stood me up, and yes naked, and of course I had my period, so there I was, naked, with one of those awful sanitary pads of those days and the awful belt we used with them. Humilitating. They didn't use one of those body stockings, they used some kind of strips of cloth, that they circled my torso with. I was so dizzy, that when the plaster heated up, they had to hit the base of my neck with a little plastic hammer to keep me from passing out. I was so out of it, that I kept telling one of the very young interns how cute he was, something my normal shy person would have never done. It was one of the worse experiences of my young 14 year old life, and I'll never forget it. Thankfully after revision I have no awful stories like that!!!!!

I think many of us have traumatic affects from our Harrington Rod surgeries that color our pursuit for care all these years later. For me, I was very worried about pain control following revision surgery, as after my Harrington Rod surgery, my pain was very out of control, and I remember often that last half an hour before the SHOT was to be administered, and begging the nurse for the shot. I also remember the God awful pain when they lifted me from the gurney and put me into my hospital bed back then, the worst pain I have ever felt, and I have had three spinal surgeries since then, none even compared. I'm so glad to say that today pain mgt is sooooo vastly better, sure surgery hurts and is painful, but nothing like back then, at least for me.

As to family, it's a process. You might need to have a family meeting, to discuss. You can always have family members ask us questions, so they can get it right from the horses mouth. I help patients of my doctor who are about to have the surgery, have answered just about every question imaginable, sometimes it helps to talk it out. Living with Flatback is tough, but living with it without understanding is even tougher. Know we are there to support you , and all of us in one way or another have had a family member or a friend who plain doesn't get it, it takes patience and education to deal with these people, and some will always be a work in progress. It's always amazing that in families alot of the time, we are kinder and more understanding of a stranger than we are of a family member, that whole pull yourself up by the bootstraps mentality, or suck it up. They would never say that to a stranger who had a malady. It sucks that while you have a debilitating condition you have to teach them, but how else will they understand. Once my Mom got it, after quite a bit of teaching and her reading material I printed for her, she actually set a friend straight who said an off the cuff comment about my condition. This gal was a retired nurse, and Mom was telling her about one of my impending surgeries, and she said" they put thousands of those Harrington Rods inback in the day, and I've never heard of any problems with them". So Mom quoted things from what she read, and this gal was amazed to learn what she did, and made the comment, boy you sure know a lot about this, and Mom said" It's only because my daughter gave me the information and I wanted to know how to help her". I think we are lucky to be in the time frame we are in, information is as available as a click of the mouse on a computer, there are support groups, and doctors treat us now as partners in our own care. It's amazing how far we have come, that while we have a condition thats care has had to spread over 10, 20 or 30 years, we can see and experience just how far medical care has progressed.

See you are SUCKING IT UP, five kids, and you home school them, WOW, if that isn't sucking it up, I don't know what is, most normal spined people wouldn't attempt that! So life goes on, even with a compromised spine, you just learn how to manage your day around your pain, and get on with it. Also you continue your quest to find your answers, and find a doc who can help you. Journeys aren't accomplished in a day, and all this is more like a marathon than a sprint, and you will find your way through it. I do believe from what I have been through in my scoliosis journey has made me a better more understanding person, improved me. I think all of us walk in a far greater understanding of those around us from our hardships. Thats the gift of scoliosis, if you can look at it as a gift. Everyone will have something, sometime in their lives medically, and how we handle it determines our outlook.Just know it's hard, a bit unfair, but you will get through it. You are lucky, you have family, and friends, and they with a little education be there for you. Us scoli guys and gals are tough people, determined, focused, and know how to fight to get whats best for us. You will find your answers. I did, and many here too.

Colorado Springs

____________________________________________________________

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