Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hi. I know this group is primarily for those who have scoliosis but was hoping to get some input. Our son has scoliosis related to his cerebral palsy. His back was fine until he went into puberty and within a six month period he had a 47 degree curvature. Within another six months it was at 82 degrees. He ended up having surgery. At first he looked great...the elongated hump on his back right side was gone, and his chest rib cage wasn't sticking out as much on the front right side. He did have issues with a lot of discomfort every time we lifted him and sitting in his mesh bath chair...seem to have muscle spasms a lot etc. He's doing a lot better now in terms of being lifted and doesn't seem to be in as much discomfort. Work was done on anteriorly from L-1 to L-4. They entered from the side to do that. If my memory serves me right they said that a couple of the lumbar were damaged. They then went into the back and put two rods/hardware and that was from T-3 to the pelvic area. Over the past two years the curvature or twisting has gotten worse. They have done numerous xrays and a full spinal MRI...everything is in place and the fusions apparently worked. The elongated raised area is back on the back right side and his front of his chest protrudes really bad...the last xray showed a curvature of 72 degrees...approxmiately...could be 68 degrees...they said it was difficult to get a measurement with the hardware and curving. I looked on line and read about both anterior and posterior fusing...and in the pictures of xrays it showed two distinct sets of hardware...on the copies of our sons xrays I see only one set of rods and hardware. One article said: " If the spine is fused from the back only (which does not fuse the vertebral bodies to each other, which are in the front) while there is still significant growth potential remaining, the spine can grow away from the metal in a twisting manner (as the vertebral bodies are in front of the spine). This is called " crankshaft " deformity. Crankshaft growth is nasty because the twist is happening in a post surgical spine with little place remaining to dissipate the distortion. " I'm wondering if that's what is happening with our son. I can post some pictures at the site to show what I'm talking about...I guess what I am wondering is if there is anyone that had spinal surgery for their scoliosis and had it return or get worse over time after the surgery. Also the pain issue...Our son has CP...he is non verbal...I do know that the spasms seemed to increase and that due to the increase in the curvature that he is very uncomfortable sitting up...we are supposed to be getting his new wheelchair which was molded to his back/behind so that he will be more comfortable. He sits on the right butt cheek and twists to the left....when they brought the molded foam out to test it before the final stages he was sitting more upright and supported and seemed a lot more comfortable. I know I tried once to sit like he does in a chair and first thing I felt was a really nasty muscle spasm in my lower back...what other types of discomfort might he feel at times. He sleeps better and is more comfortable on his left side, doesn't last very long laying on the right side and laying on his back...forget it...his back is arched and his neck is arched sorta back...can't lay flat. One thing we noticed is that when he was in the hospital for possible aspiration pnemonia that if he layed on the left side...his comfortable side...his oxygen sats dropped, but if we flipped him to the right side they went up. When we figured that out and they said he couldn't go home still the sats stayed above a certain point we made sure he was on the right side when they came to do a check on him. Any thoughts or input would be greatly appreciated. I need to set up another appt. and probably more xrays and definitely have some questions as to what's going on and what he may be facing. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi, . I am sorry to hear about your son's major medical issues. I really don't have anything to offer, but you also might want to join and post what you've written on the National Scoliosis Foundation boards. There's lots of information there too. Lots here, too--just a suggestion to . I know I've joined all sorts of boards and groups getting information. Usually someone, somewhere, has a suggestion. Take care, n New to group & question > Hi. I know this group is primarily for those who have scoliosis but > was hoping to get some input. Our son has scoliosis related to his > cerebral palsy. His back was fine until he went into puberty and > within a six month period he had a 47 degree curvature. Within > another six months it was at 82 degrees. > > He ended up having surgery. At first he looked great...the > elongated hump on his back right side was gone, and his chest rib > cage wasn't sticking out as much on the front right side. He did > have issues with a lot of discomfort every time we lifted him and > sitting in his mesh bath chair...seem to have muscle spasms a lot > etc. He's doing a lot better now in terms of being lifted and > doesn't seem to be in as much discomfort. > > Work was done on anteriorly from L-1 to L-4. They entered from the > side to do that. If my memory serves me right they said that a > couple of the lumbar were damaged. They then went into the back and > put two rods/hardware and that was from T-3 to the pelvic area. > > Over the past two years the curvature or twisting has gotten worse. > They have done numerous xrays and a full spinal MRI...everything is > in place and the fusions apparently worked. The elongated raised > area is back on the back right side and his front of his chest > protrudes really bad...the last xray showed a curvature of 72 > degrees...approxmiately...could be 68 degrees...they said it was > difficult to get a measurement with the hardware and curving. > > I looked on line and read about both anterior and posterior > fusing...and in the pictures of xrays it showed two distinct sets of > hardware...on the copies of our sons xrays I see only one set of > rods and hardware. One article said: > > " If the spine is fused from the back only (which does not fuse the > vertebral bodies to each other, which are in the front) while there > is still significant growth potential remaining, the spine can grow > away from the metal in a twisting manner (as the vertebral bodies > are in front of the spine). This is called " crankshaft " deformity. > Crankshaft growth is nasty because the twist is happening in a post > surgical spine with little place remaining to dissipate the > distortion. " > > I'm wondering if that's what is happening with our son. > > I can post some pictures at the site to show what I'm talking > about...I guess what I am wondering is if there is anyone that had > spinal surgery for their scoliosis and had it return or get worse > over time after the surgery. Also the pain issue...Our son has > CP...he is non verbal...I do know that the spasms seemed to increase > and that due to the increase in the curvature that he is very > uncomfortable sitting up...we are supposed to be getting his new > wheelchair which was molded to his back/behind so that he will be > more comfortable. He sits on the right butt cheek and twists to the > left....when they brought the molded foam out to test it before the > final stages he was sitting more upright and supported and seemed a > lot more comfortable. I know I tried once to sit like he does in a > chair and first thing I felt was a really nasty muscle spasm in my > lower back...what other types of discomfort might he feel at times. > He sleeps better and is more comfortable on his left side, doesn't > last very long laying on the right side and laying on his > back...forget it...his back is arched and his neck is arched sorta > back...can't lay flat. One thing we noticed is that when he was in > the hospital for possible aspiration pnemonia that if he layed on > the left side...his comfortable side...his oxygen sats dropped, but > if we flipped him to the right side they went up. When we figured > that out and they said he couldn't go home still the sats stayed > above a certain point we made sure he was on the right side when > they came to do a check on him. > > Any thoughts or input would be greatly appreciated. I need to set > up another appt. and probably more xrays and definitely have some > questions as to what's going on and what he may be facing. > > Thanks > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi...thank you for your response. I did end up signing up on the National Scoliosis Foundation board...said it was activated but was waiting for me to be added to the forum or something like that...figure I will check back tomorrow. Did call the surgeon again and waiting for a call back from her. Hopefully get some answers because looking at pics before his surgery next to current pics and if you said he'd ever had spinal surgery I'd say " no way " ...no difference...looks as bad as he did before the surgery two years ago...so to me that says something is going on. Thanks again.. karen > From: adorote1 <adorote1@...> > Subject: Re: New to group & question > Scoliosis Treatment > Date: Wednesday, December 10, 2008, 8:11 AM > Hi, . > > I am sorry to hear about your son's major medical > issues. > > I really don't have anything to offer, but you also > might want to join and > post what you've written on the National Scoliosis > Foundation boards. > There's lots of information there too. > > Lots here, too--just a suggestion to . I know > I've joined all sorts of > boards and groups getting information. > > Usually someone, somewhere, has a suggestion. > > Take care, > n > > New to group & question > > > > Hi. I know this group is primarily for those who have > scoliosis but > > was hoping to get some input. Our son has scoliosis > related to his > > cerebral palsy. His back was fine until he went into > puberty and > > within a six month period he had a 47 degree > curvature. Within > > another six months it was at 82 degrees. > > > > He ended up having surgery. At first he looked > great...the > > elongated hump on his back right side was gone, and > his chest rib > > cage wasn't sticking out as much on the front > right side. He did > > have issues with a lot of discomfort every time we > lifted him and > > sitting in his mesh bath chair...seem to have muscle > spasms a lot > > etc. He's doing a lot better now in terms of > being lifted and > > doesn't seem to be in as much discomfort. > > > > Work was done on anteriorly from L-1 to L-4. They > entered from the > > side to do that. If my memory serves me right they > said that a > > couple of the lumbar were damaged. They then went > into the back and > > put two rods/hardware and that was from T-3 to the > pelvic area. > > > > Over the past two years the curvature or twisting has > gotten worse. > > They have done numerous xrays and a full spinal > MRI...everything is > > in place and the fusions apparently worked. The > elongated raised > > area is back on the back right side and his front of > his chest > > protrudes really bad...the last xray showed a > curvature of 72 > > degrees...approxmiately...could be 68 degrees...they > said it was > > difficult to get a measurement with the hardware and > curving. > > > > I looked on line and read about both anterior and > posterior > > fusing...and in the pictures of xrays it showed two > distinct sets of > > hardware...on the copies of our sons xrays I see only > one set of > > rods and hardware. One article said: > > > > " If the spine is fused from the back only (which > does not fuse the > > vertebral bodies to each other, which are in the > front) while there > > is still significant growth potential remaining, the > spine can grow > > away from the metal in a twisting manner (as the > vertebral bodies > > are in front of the spine). This is called > " crankshaft " deformity. > > Crankshaft growth is nasty because the twist is > happening in a post > > surgical spine with little place remaining to > dissipate the > > distortion. " > > > > I'm wondering if that's what is happening with > our son. > > > > I can post some pictures at the site to show what > I'm talking > > about...I guess what I am wondering is if there is > anyone that had > > spinal surgery for their scoliosis and had it return > or get worse > > over time after the surgery. Also the pain > issue...Our son has > > CP...he is non verbal...I do know that the spasms > seemed to increase > > and that due to the increase in the curvature that he > is very > > uncomfortable sitting up...we are supposed to be > getting his new > > wheelchair which was molded to his back/behind so that > he will be > > more comfortable. He sits on the right butt cheek and > twists to the > > left....when they brought the molded foam out to test > it before the > > final stages he was sitting more upright and supported > and seemed a > > lot more comfortable. I know I tried once to sit like > he does in a > > chair and first thing I felt was a really nasty muscle > spasm in my > > lower back...what other types of discomfort might he > feel at times. > > He sleeps better and is more comfortable on his left > side, doesn't > > last very long laying on the right side and laying on > his > > back...forget it...his back is arched and his neck is > arched sorta > > back...can't lay flat. One thing we noticed is > that when he was in > > the hospital for possible aspiration pnemonia that if > he layed on > > the left side...his comfortable side...his oxygen sats > dropped, but > > if we flipped him to the right side they went up. > When we figured > > that out and they said he couldn't go home still > the sats stayed > > above a certain point we made sure he was on the right > side when > > they came to do a check on him. > > > > Any thoughts or input would be greatly appreciated. I > need to set > > up another appt. and probably more xrays and > definitely have some > > questions as to what's going on and what he may be > facing. > > > > Thanks > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi, . If you find you have a hard time posting to the NSF board, send an email to the webmaster. Or there should be a contact email somewhere on the site. Initially I had a hard time activating my account, but I contacted them and they fixed the problem right away. Take care! n New to group & question >> >> >> > Hi. I know this group is primarily for those who have >> scoliosis but >> > was hoping to get some input. Our son has scoliosis >> related to his >> > cerebral palsy. His back was fine until he went into >> puberty and >> > within a six month period he had a 47 degree >> curvature. Within >> > another six months it was at 82 degrees. >> > >> > He ended up having surgery. At first he looked >> great...the >> > elongated hump on his back right side was gone, and >> his chest rib >> > cage wasn't sticking out as much on the front >> right side. He did >> > have issues with a lot of discomfort every time we >> lifted him and >> > sitting in his mesh bath chair...seem to have muscle >> spasms a lot >> > etc. He's doing a lot better now in terms of >> being lifted and >> > doesn't seem to be in as much discomfort. >> > >> > Work was done on anteriorly from L-1 to L-4. They >> entered from the >> > side to do that. If my memory serves me right they >> said that a >> > couple of the lumbar were damaged. They then went >> into the back and >> > put two rods/hardware and that was from T-3 to the >> pelvic area. >> > >> > Over the past two years the curvature or twisting has >> gotten worse. >> > They have done numerous xrays and a full spinal >> MRI...everything is >> > in place and the fusions apparently worked. The >> elongated raised >> > area is back on the back right side and his front of >> his chest >> > protrudes really bad...the last xray showed a >> curvature of 72 >> > degrees...approxmiately...could be 68 degrees...they >> said it was >> > difficult to get a measurement with the hardware and >> curving. >> > >> > I looked on line and read about both anterior and >> posterior >> > fusing...and in the pictures of xrays it showed two >> distinct sets of >> > hardware...on the copies of our sons xrays I see only >> one set of >> > rods and hardware. One article said: >> > >> > " If the spine is fused from the back only (which >> does not fuse the >> > vertebral bodies to each other, which are in the >> front) while there >> > is still significant growth potential remaining, the >> spine can grow >> > away from the metal in a twisting manner (as the >> vertebral bodies >> > are in front of the spine). This is called >> " crankshaft " deformity. >> > Crankshaft growth is nasty because the twist is >> happening in a post >> > surgical spine with little place remaining to >> dissipate the >> > distortion. " >> > >> > I'm wondering if that's what is happening with >> our son. >> > >> > I can post some pictures at the site to show what >> I'm talking >> > about...I guess what I am wondering is if there is >> anyone that had >> > spinal surgery for their scoliosis and had it return >> or get worse >> > over time after the surgery. Also the pain >> issue...Our son has >> > CP...he is non verbal...I do know that the spasms >> seemed to increase >> > and that due to the increase in the curvature that he >> is very >> > uncomfortable sitting up...we are supposed to be >> getting his new >> > wheelchair which was molded to his back/behind so that >> he will be >> > more comfortable. He sits on the right butt cheek and >> twists to the >> > left....when they brought the molded foam out to test >> it before the >> > final stages he was sitting more upright and supported >> and seemed a >> > lot more comfortable. I know I tried once to sit like >> he does in a >> > chair and first thing I felt was a really nasty muscle >> spasm in my >> > lower back...what other types of discomfort might he >> feel at times. >> > He sleeps better and is more comfortable on his left >> side, doesn't >> > last very long laying on the right side and laying on >> his >> > back...forget it...his back is arched and his neck is >> arched sorta >> > back...can't lay flat. One thing we noticed is >> that when he was in >> > the hospital for possible aspiration pnemonia that if >> he layed on >> > the left side...his comfortable side...his oxygen sats >> dropped, but >> > if we flipped him to the right side they went up. >> When we figured >> > that out and they said he couldn't go home still >> the sats stayed >> > above a certain point we made sure he was on the right >> side when >> > they came to do a check on him. >> > >> > Any thoughts or input would be greatly appreciated. I >> need to set >> > up another appt. and probably more xrays and >> definitely have some >> > questions as to what's going on and what he may be >> facing. >> > >> > Thanks >> > >> > >> > >> > ------------------------------------ >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 , You wrote... " If the spine is fused from the back only (which does not fuse the vertebral bodies to each other, which are in the front) while there is still significant growth potential remaining, the spine can grow away from the metal in a twisting ...... You said your son's surgery was anterior...the above quote you found was speaking about 'from the back' meaning posterior surgery. Yes, crankshaft can occur from posterior surgery, but I don't think it can from anterior (from the front of the spine). Jolene **************Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.