Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 My daughter h is almost 13 and is a weaker type 2. She had a total spinal fusion done in 2006 when she was 10yrs old. At that point her curve was severe but still completely flexible because we had braced faithfully, but her pulmonary function was declining. We had very little option at that point because if her function had declined further they were fearful that surgery would not be a possibility. In hindsight, I wish we had known more about the growth rods when h was younger. Years of bracing have left her with a squished rib-cage and malformed upper chest. This causes her lungs (primarily the left side) to also be smaller than they should be. I also wanted to mention that some doctors do an anterior and posterior fusion and others only do posterior. h's doctor only did posterior because we were not willing to deflate one of her lungs to get to the anterior side of the spine. It just wasn't an option. So, although she had the fusion, she has grown a few inches since then and now we are watching very carefully for crankshafting. So far she has grown fairly straight! She is now 5'4 " and about 95lbs. Suzanne would be a wonderful person to speak with about the growth rods. Her daughter had them placed when she was 9 and they have had great success with them. Love and Hugs Jeni From: Foo Mee Ling <mlfooec@...> Subject: Scoliosis Surgery , sma@... Date: Friday, November 28, 2008, 11:21 PM Dear All, My daughter, age 9 with SMA type II has just been advised to undergo the scoliosis surgery next year maybe in June or July. It is something which we don't expect to come so early (no doubt I know that she will need to go thru that eventually). Me and my husband are still unprepared for this surgery. I hope anyone can help to answer my questions below: 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be fused/fixed so she will not grow any taller on her upper limb. is this the only choice she has ? she is only 9, we really hope we can defer this surgery... 2) is there any other type of implant that she will " grow " with her height ? maybe the type that she needs another surgery when she is older ? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only. but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery. Btw, is there any other alternative we can do ? I am sorry to ask so many questions. I really need anyone who can share with me the experience. Thanks. Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 I had my spinal fusion at age 14. I was twisted 45 degrees and bent backwards 80 degrees. The surgery took 12 hours and they inserted two titanium rods alongside my spine. They typically take a bone graph to use, but my hip was very thin and broke during the process. It's something that is common in small or young patients and you may want to double check that an alternative method will be used or is immediately available should the bone be too brittle and thin. I have not grown since my surgery (4'7 " ). Personally, being short is not so horrible. We were offered the use of a vest but it was extremely painful and would only offer about 6 - 9 months additional time. For me, there were no other alternatives. My parents were not prepared for the surgery either, but I insisted that I wanted it and would not wear the vest so they agreed. Perhaps the doctor can consider a smaller length of rod. I have heard some patients that are very young can get rods fused at a small location rather than the entire spine and can go back later in life to have a second surgery to fuse the entire spine once they are grown. It sounds risky for SMA only because the respiratory health almost always is compromised with time and you won't be able to always endure anesthesia. I would get a second opinion if you want to delay the surgery. <3Kendra > Dear All, > My daughter, age 9 with SMA type II has just been advised to undergo the scoliosis surgery next year maybe in June or July. It is something which we don't expect to come so early (no doubt I know that she will need to go thru that eventually). Me and my husband are still unprepared for this surgery. I hope anyone can help to answer my questions below: > > 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be fused/fixed so she will not grow any taller on her upper limb. is this the only choice she has ? she is only 9, we really hope we can defer this surgery... > 2) is there any other type of implant that she will " grow " with her height ? maybe the type that she needs another surgery when she is older ? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only. but we are really not sure > 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery. > > Btw, is there any other alternative we can do ? > > I am sorry to ask so many questions. I really need anyone who can share with me the experience. Thanks. Mee Ling > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 I was 6 yrs old. (I'm now 31) and think I have one rod in my back but not too sure. It stunted my growth (I'm 4' 6 " ) but that is OK. The surgery took 12 hours and a year later I was trached (I believe the 12 hours under anesthesia was very hard on my respiratory system).~a From: Foo Mee Ling <mlfooec@...> Subject: Scoliosis Surgery , sma@... Date: Saturday, November 29, 2008, 12:21 AM Dear All, My daughter, age 9 with SMA type II has just been advised to undergo the scoliosis surgery next year maybe in June or July. It is something which we don't expect to come so early (no doubt I know that she will need to go thru that eventually). Me and my husband are still unprepared for this surgery. I hope anyone can help to answer my questions below: 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be fused/fixed so she will not grow any taller on her upper limb. is this the only choice she has ? she is only 9, we really hope we can defer this surgery... 2) is there any other type of implant that she will " grow " with her height ? maybe the type that she needs another surgery when she is older ? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only. but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery. Btw, is there any other alternative we can do ? I am sorry to ask so many questions. I really need anyone who can share with me the experience. Thanks. Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 may be you get a second opinion... I did my when i was 24 too late for a better result Felipe Scoliosis Surgery Dear All, My daughter, age 9 with SMA type II has just been advised to undergo the scoliosis surgery next year maybe in June or July. It is something which we don't expect to come so early (no doubt I know that she will need to go thru that eventually). Me and my husband are still unprepared for this surgery. I hope anyone can help to answer my questions below: 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be fused/fixed so she will not grow any taller on her upper limb. is this the only choice she has ? she is only 9, we really hope we can defer this surgery... 2) is there any other type of implant that she will " grow " with her height ? maybe the type that she needs another surgery when she is older ? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only. but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery. Btw, is there any other alternative we can do ? I am sorry to ask so many questions. I really need anyone who can share with me the experience. Thanks. Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Thanks a lot to all who have responded to my email. If you have any other advice, please email to me at mlfooec@... Best regards, Mee Ling From: Felipe da Motta <felipe@...> Subject: Re: Scoliosis Surgery Date: Tuesday, December 2, 2008, 2:39 AM may be you get a second opinion... I did my when i was 24 too late for a better result Felipe Scoliosis Surgery Dear All, My daughter, age 9 with SMA type II has just been advised to undergo the scoliosis surgery next year maybe in June or July. It is something which we don't expect to come so early (no doubt I know that she will need to go thru that eventually). Me and my husband are still unprepared for this surgery. I hope anyone can help to answer my questions below: 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be fused/fixed so she will not grow any taller on her upper limb. is this the only choice she has ? she is only 9, we really hope we can defer this surgery... 2) is there any other type of implant that she will " grow " with her height ? maybe the type that she needs another surgery when she is older ? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only. but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery. Btw, is there any other alternative we can do ? I am sorry to ask so many questions. I really need anyone who can share with me the experience. Thanks. Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Sorry to be so late again on this, but just a quick line to say that Evan Davies (http://www.specialistinfo.com/consget.php?con=daviortp12 ) in the UK (Southampton) has pioneered a method of 2 rods and a kind of link which allows for growth without further operations. Good luck, and go for it, without my fusion, I would not have made it to my 20's - 43 now. I was 17, too late really, but that's fine, I'm here still ________________________________ From: Foo Mee Ling <mlfooec@... <mailto:mlfooec%40> > <mailto:%40> ; sma@... <mailto:sma%40smasupport.com> Sent: Saturday, November 29, 2008 12:21:48 AM Subject: Scoliosis Surgery Dear All, My daughter, age 9 with SMA type II has just been advised to undergo the scoliosis surgery next year maybe in June or July. It is something which we don't expect to come so early (no doubt I know that she will need to go thru that eventually). Me and my husband are still unprepared for this surgery. I hope anyone can help to answer my questions below: 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be fused/fixed so she will not grow any taller on her upper limb. is this the only choice she has ? she is only 9, we really hope we can defer this surgery... 2) is there any other type of implant that she will " grow " with her height ? maybe the type that she needs another surgery when she is older ? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only. but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery. Btw, is there any other alternative we can do ? I am sorry to ask so many questions. I really need anyone who can share with me the experience. Thanks. Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Forgive me for speaking to myself, I find it keeps me sane.... Here's a link to a newspaper article on this method - http://www.telegraph.co.uk/health/healthnews/3536625/Teenage-gymnast-has-pio neering-surgery-to-cure-twisted-spine.html (http://tinyurl.com/67pzql ) From: [mailto: ] On Behalf Of Geary Sent: Wednesday, December 03, 2008 10:22 PM Subject: RE: Scoliosis Surgery Sorry to be so late again on this, but just a quick line to say that Evan Davies (http://www.specialistinfo.com/consget.php?con=daviortp12 ) in the UK (Southampton) has pioneered a method of 2 rods and a kind of link which allows for growth without further operations. Good luck, and go for it, without my fusion, I would not have made it to my 20's - 43 now. I was 17, too late really, but that's fine, I'm here still ________________________________ From: Foo Mee Ling <mlfooec@... <mailto:mlfooec%40> <mailto:mlfooec%40> > <mailto:%40> <mailto:%40> ; sma@... <mailto:sma%40smasupport.com> <mailto:sma%40smasupport.com> Sent: Saturday, November 29, 2008 12:21:48 AM Subject: Scoliosis Surgery Dear All, My daughter, age 9 with SMA type II has just been advised to undergo the scoliosis surgery next year maybe in June or July. It is something which we don't expect to come so early (no doubt I know that she will need to go thru that eventually). Me and my husband are still unprepared for this surgery. I hope anyone can help to answer my questions below: 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be fused/fixed so she will not grow any taller on her upper limb. is this the only choice she has ? she is only 9, we really hope we can defer this surgery... 2) is there any other type of implant that she will " grow " with her height ? maybe the type that she needs another surgery when she is older ? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only. but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery. Btw, is there any other alternative we can do ? I am sorry to ask so many questions. I really need anyone who can share with me the experience. Thanks. Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 I wouldn't say the back of my chair is " special " but it's one that has molded over the years to the shape of my torso. From: Felipe da Motta <felipeibiruba (DOT) com.br> Subject: Re: Scoliosis Surgery @gro ups.com Date: Tuesday, December 2, 2008, 2:39 AM may be you get a second opinion... I did my when i was 24 too late for a better result Felipe Scoliosis Surgery Dear All, My daughter, age 9 with SMA type II has just been advised to undergo the scoliosis surgery next year maybe in June or July. It is something which we don't expect to come so early (no doubt I know that she will need to go thru that eventually). Me and my husband are still unprepared for this surgery. I hope anyone can help to answer my questions below: 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be fused/fixed so she will not grow any taller on her upper limb. is this the only choice she has ? she is only 9, we really hope we can defer this surgery... 2) is there any other type of implant that she will " grow " with her height ? maybe the type that she needs another surgery when she is older ? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only. but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery. Btw, is there any other alternative we can do ? I am sorry to ask so many questions. I really need anyone who can share with me the experience. Thanks. Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Yes after the surgery I had a lot more trouble holding up my head and had to get a higher back rest on my chair. I don¹t know if it was from the surgery or from 3 months laying down flat. On 12/3/08 5:44 AM, " Foo Mee Ling " <mlfooec@...> wrote: > > > > Thanks for sharing. Do you need to use a special wheelchair with the back > support after the surgery ? > > > >> > >> > >> > >> > I had mine done when I was 12 (I'm 50 now) at Rancho Los Amigos in Downey, >> > CA.....in 1970. My scoliosis was crushing my liver and lung. My parents & I >> > were >> > told that I probably would not survive the procedure. It took two 12 hour >> > surgeries... .both a month apart. I was on a vent for 6 weeks, but then >> weaned >> > off. Without the surgery, I would have died. But, because of it, I was able >> to >> > go >> > vent-free up until 3 years ago. The surgery did not stunt my growth, so I >> > feel that it was a good thing. >> > >> > Vicki >> > SMAI/II >> > ************ **Finally, one site has it all: your friends, your email, your >> > favorite sites. Try the NEW AOL.com. >> > (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco >> m0000000 >> > 6) >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 I was bed-bound in a halo body cast for 9 months. I lost most of my strength. L ________________________________ From: <nicoleroberts@...> " " < > Sent: Wednesday, December 3, 2008 6:44:14 PM Subject: Re: Scoliosis Surgery Yes after the surgery I had a lot more trouble holding up my head and had to get a higher back rest on my chair. I don¹t know if it was from the surgery or from 3 months laying down flat. On 12/3/08 5:44 AM, " Foo Mee Ling " <mlfooec (DOT) com> wrote: > > > > Thanks for sharing. Do you need to use a special wheelchair with the back > support after the surgery ? > > > >> > >> > >> > >> > I had mine done when I was 12 (I'm 50 now) at Rancho Los Amigos in Downey, >> > CA.....in 1970. My scoliosis was crushing my liver and lung. My parents & I >> > were >> > told that I probably would not survive the procedure. It took two 12 hour >> > surgeries... .both a month apart. I was on a vent for 6 weeks, but then >> weaned >> > off. Without the surgery, I would have died. But, because of it, I was able >> to >> > go >> > vent-free up until 3 years ago. The surgery did not stunt my growth, so I >> > feel that it was a good thing. >> > >> > Vicki >> > SMAI/II >> > ************ **Finally, one site has it all: your friends, your email, your >> > favorite sites. Try the NEW AOL.com. >> > (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco >> m0000000 >> > 6) >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 Dear All, My daughter has done a Lung Function Test yesterday. Would appreciate if someone can help me to interpret the attached report on her lung condition now as her doctor is so busy and ask us to see him in the next appointment in June 09. The doctor also advised us that the surgry/implant required is " Posterior Spinal Instrumentation (pedicle screws) " . He told me that only posterior is necessary for my daughter case. Any advice please. Rgds, Mee Ling From: Foo Mee Ling <mlfooec@...> Subject: Scoliosis Surgery , sma@... Date: Saturday, November 29, 2008, 1:21 PM Dear All, My daughter, age 9 with SMA type II has just been advised to undergo the scoliosis surgery next year maybe in June or July. It is something which we don't expect to come so early (no doubt I know that she will need to go thru that eventually). Me and my husband are still unprepared for this surgery. I hope anyone can help to answer my questions below: 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be fused/fixed so she will not grow any taller on her upper limb. is this the only choice she has ? she is only 9, we really hope we can defer this surgery... 2) is there any other type of implant that she will " grow " with her height ? maybe the type that she needs another surgery when she is older ? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only. but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery. Btw, is there any other alternative we can do ? I am sorry to ask so many questions. I really need anyone who can share with me the experience. Thanks. Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 Not fun. Sent from my Verizon BlackBerry Re: Scoliosis Surgery > > Yes after the surgery I had a lot more trouble holding up my head and had to > get a higher back rest on my chair. I don¹t know if it was from the surgery > or from 3 months laying down flat. > > On 12/3/08 5:44 AM, " Foo Mee Ling " <mlfooec (DOT) com> wrote: > >> > >> > >> > >> > Thanks for sharing. Do you need to use a special wheelchair with the back >> > support after the surgery ? >> > >> > >> > >>>> >> > >>>> >> > >>>> >> > >>>> >> > I had mine done when I was 12 (I'm 50 now) at Rancho Los Amigos in >>>> Downey, >>>> >> > CA.....in 1970. My scoliosis was crushing my liver and lung. My >>>> parents & I >>>> >> > were >>>> >> > told that I probably would not survive the procedure. It took two 12 hour >>>> >> > surgeries... .both a month apart. I was on a vent for 6 weeks, but then >>> >> weaned >>>> >> > off. Without the surgery, I would have died. But, because of it, I was able >>> >> to >>>> >> > go >>>> >> > vent-free up until 3 years ago. The surgery did not stunt my growth, so I >>>> >> > feel that it was a good thing. >>>> >> > >>>> >> > Vicki >>>> >> > SMAI/II >>>> >> > ************ **Finally, one site has it all: your friends, your email, your >>>> >> > favorite sites. Try the NEW AOL.com. >>>> >> > (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & >>>> ncid=emlcntaolco >>> >> m0000000 >>>> >> > 6) >>>> >> > >>>> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2008 Report Share Posted December 7, 2008 I am a weak type II and I had my surgery when I was 7 in 2001. It was probably the best thing I could do for myself. I had no more (chronic) back pain, could breathe better, didn't need a brace, and " grew " 3 in. taller. I was in the hospital for about two weeks. I apologize but I don't know the answers to your questions. But my mother frequently joins message boards and talks on the phone with other worried mothers. She would probably be able to effectively answer your questions. Call 1-408-374-5910 and ask for Theriault (pron. Terio) .> She'll be available after Monday. I hope this helps ! Jade Scoliosis Surgery , sma@... Date: Saturday, November 29, 2008, 1:21 PM Dear All, My daughter, age 9 with SMA type II has?just been advised to undergo the scoliosis surgery next year maybe in June or July.? It is something which we don't expect to come so early (no doubt I know that she will need to?go thru that eventually). Me and my husband are still unprepared for this surgery.??I hope?anyone?can help to?answer my questions below: ? 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be?fused/fixed so she will not grow any taller on her upper limb.? is this the?only choice she has???she is only 9, we really hope we can defer this surgery...? 2) is there any other type of implant that she?will " grow " with her height ?? maybe the type that she needs another surgery when she is older ?? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only.? but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ?? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery.? ? Btw, is there any other alternative we can do ? ? I am sorry to ask so many questions.? I really need?anyone who can?share with me the experience.? Thanks.? Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2008 Report Share Posted December 7, 2008 I had spinal fusion at age 10. I had a close to 90 degree S curve but because I wore my brace regularly my back was still quite flexible. I was intubated for a day and a half (they switched me from vent to bipap sometime over that day and a half) and was extubated without any issues. I was out of the hospital in 9 days (worst hospitalization I ever had, thankfully that wasn't because of the surgery). The hardest part was the month and a half it took to get myself back into my routine of sitting upright all day. The surgery greatly increased my lung capacity and I was able to hold off on using anything for help breathing at night. Yes, I'm short, but it doesn't really bother me, and like everything else in life, it has it's advantages and disadvantages. & Ivy- service dog extraordinaire 24 y/o, SMA I/II www.k94life.org >From: Foo Mee Ling <mlfooec@...> > >Subject: Scoliosis Surgery > > , sma@... > >Date: Saturday, November 29, 2008, 1:21 PM > > > >Dear All, > >My daughter, age 9 with SMA type II has?just been advised to undergo the >scoliosis surgery next year maybe in June or July.? It is something which >we don't expect to come so early (no doubt I know that she will need to?go >thru that eventually). Me and my husband are still unprepared for this >surgery.??I hope?anyone?can help to?answer my questions below: > >? > >1) what type of implant should we consider ? the doctor said the implant >will be one time only and her back will be?fused/fixed so she will not >grow any taller on her upper limb.? is this the?only choice she has???she >is only 9, we really hope we can defer this surgery...? > >2) is there any other type of implant that she?will " grow " with her height >?? maybe the type that she needs another surgery when she is older ?? the >doctor said, since she is wheelchair bound, so her height is not something >we should consider, that's why he recommended this implant which need one >time operation only.? but we are really not sure > >3) we have tried to tell the doctor to defer the surgery but the doctor >advised us that as the curve is 45 degree, it is better to do it early, >less risky, better recovery, what is your advice ?? he said if we wait >longer, the curve maybe even worst and even more risky to do the surgery.? > >? > >Btw, is there any other alternative we can do ? > >? > >I am sorry to ask so many questions.? I really need?anyone who can?share >with me the experience.? Thanks.? Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2009 Report Share Posted March 19, 2009 I have a friend in another state whose son had this last summer.? If you'd like to e-mail me offlist I can connect you to her. H. Scoliosis surgery We have just recently learned that our 14-year old son with autism will need spine surgery for advanced scoliosis. Has anyone had experience with this to offer advice to prepare? Thanks ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 SHRINERS, CHICAGO. DR. PETE SMITH....... From: mom4art50 <francisgob@...> Subject: Scoliosis surgery IPADDUnite Date: Thursday, March 19, 2009, 9:57 AM We have just recently learned that our 14-year old son with autism will need spine surgery for advanced scoliosis. Has anyone had experience with this to offer advice to prepare? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 > > We have just recently learned that our 14-year old son with autism will need spine surgery for advanced scoliosis. Has anyone had experience with this to offer advice to prepare? Thanks > My daughter had the surgery, she not autistic, but we need to be carefull when she came home because my son is. She actully went through it 2X at Luthern General. I also have a friend whos daught has CP and she just had it last Wed. at Shriners. I don't know what the Dr. name is. The surgery went well but she is allegic to some of the pain medications. I believe she will be there for about a week and then she will be moving to ville for the rest of her recovery. She is also non-verbal. email me at my private emailand I can send you my phone number if you want to talk. Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2010 Report Share Posted May 15, 2010 Hi Jade, Still remember I have asked for advice on my daughter scoliosis, just to update, she finally had the operation in Nov last year. She is doing fine now but noticed that she has a bit of hump on near her right shoulder. Is that common for SMA kid ? Do you have problem with the leg contracture ? My daughter couldn't straighten her legs now. Any advice ? Thanks. Mee Ling From: Foo Mee Ling <mlfooec (DOT) com> Subject: Scoliosis Surgery @gro ups.com, smasmasupport (DOT) com Date: Saturday, November 29, 2008, 1:21 PM Dear All, My daughter, age 9 with SMA type II has?just been advised to undergo the scoliosis surgery next year maybe in June or July.? It is something which we don't expect to come so early (no doubt I know that she will need to?go thru that eventually). Me and my husband are still unprepared for this surgery.??I hope?anyone? can help to?answer my questions below: ? 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be?fused/fixed so she will not grow any taller on her upper limb.? is this the?only choice she has???she is only 9, we really hope we can defer this surgery...? 2) is there any other type of implant that she?will " grow " with her height ?? maybe the type that she needs another surgery when she is older ?? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only.? but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ?? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery.? ? Btw, is there any other alternative we can do ? ? I am sorry to ask so many questions.? I really need?anyone who can?share with me the experience.? Thanks.? Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2010 Report Share Posted May 16, 2010 Yes, many times the surgery does not completely eliminate the curvature (look at our photos in the photos sections...many of us have had the surgery but still have scoliosis) Yes, I have hip and leg contractions that developed as I was recovering from my spinal surgery (many years ago). Lori ________________________________ From: Foo Mee Ling <mlfooec@...> Sent: Sat, May 15, 2010 11:08:24 PM Subject: Re: Re: Scoliosis Surgery Hi Jade, Still remember I have asked for advice on my daughter scoliosis, just to update, she finally had the operation in Nov last year. She is doing fine now but noticed that she has a bit of hump on near her right shoulder. Is that common for SMA kid ? Do you have problem with the leg contracture ? My daughter couldn't straighten her legs now. Any advice ? Thanks. Mee Ling From: Foo Mee Ling <mlfooec (DOT) com> Subject: Scoliosis Surgery @gro ups.com, smasmasupport (DOT) com Date: Saturday, November 29, 2008, 1:21 PM Dear All, My daughter, age 9 with SMA type II has?just been advised to undergo the scoliosis surgery next year maybe in June or July.? It is something which we don't expect to come so early (no doubt I know that she will need to?go thru that eventually). Me and my husband are still unprepared for this surgery.??I hope?anyone? can help to?answer my questions below: ? 1) what type of implant should we consider ? the doctor said the implant will be one time only and her back will be?fused/fixed so she will not grow any taller on her upper limb.? is this the?only choice she has???she is only 9, we really hope we can defer this surgery...? 2) is there any other type of implant that she?will " grow " with her height ?? maybe the type that she needs another surgery when she is older ?? the doctor said, since she is wheelchair bound, so her height is not something we should consider, that's why he recommended this implant which need one time operation only.? but we are really not sure 3) we have tried to tell the doctor to defer the surgery but the doctor advised us that as the curve is 45 degree, it is better to do it early, less risky, better recovery, what is your advice ?? he said if we wait longer, the curve maybe even worst and even more risky to do the surgery.? ? Btw, is there any other alternative we can do ? ? I am sorry to ask so many questions.? I really need?anyone who can?share with me the experience.? Thanks.? Mee Ling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2010 Report Share Posted May 16, 2010 Dear Mee Ling, What you have described is EXACTLY what happened to me after my scoliosis surgery. I have SMA-2, so does my brother, and my surgery was done when I was 10, mom was pregnant with my brother then. The rods have pushed out my right back shoulder blade and the surgeon said it was common for that to happen. My brother had his surgery when he turned 13, but his back is ok. We both couldn't get our legs straight after the surgery. We used to be able to stand in leg braces, but the surgery made that impossible. We recovered well from surgery, yet for me, the back curved again as I got older but not to the point of where it was before surgery. My brother's back remains pretty straight. He's began to lean on one side a bit but is still straight and much stronger than I was at his age. Males typically are due to their testoserone. I hope this helped you in some way. If you have any more questions, feel free to ask me anything. God Bless, Meg W. * " Your Approval of Me is Not needed, desired nor required, but I will take your Acceptance! " * On May 15, 2010, at 11:08 PM, Foo Mee Ling <mlfooec@...> wrote: > Hi Jade, > Still remember I have asked for advice on my daughter scoliosis, > just to update, she finally had the operation in Nov last year. She > is doing fine now but noticed that she has a bit of hump on near her > right shoulder. Is that common for SMA kid ? Do you have problem > with the leg contracture ? My daughter couldn't straighten her legs > now. Any advice ? Thanks. Mee Ling > > > > From: Foo Mee Ling <mlfooec (DOT) com> > > Subject: Scoliosis Surgery > > @gro ups.com, smasmasupport (DOT) com > > Date: Saturday, November 29, 2008, 1:21 PM > > Dear All, > > My daughter, age 9 with SMA type II has?just been advised to undergo > the scoliosis surgery next year maybe in June or July.? It is > something which we don't expect to come so early (no doubt I know > that she will need to?go thru that eventually). Me and my husband > are still unprepared for this surgery.??I hope?anyone? can help to? > answer my questions below: > > ? > > 1) what type of implant should we consider ? the doctor said the > implant will be one time only and her back will be?fused/fixed so > she will not grow any taller on her upper limb.? is this the?only > choice she has???she is only 9, we really hope we can defer this > surgery...? > > 2) is there any other type of implant that she?will " grow " with her > height ?? maybe the type that she needs another surgery when she is > older ?? the doctor said, since she is wheelchair bound, so her > height is not something we should consider, that's why he > recommended this implant which need one time operation only.? but we > are really not sure > > 3) we have tried to tell the doctor to defer the surgery but the > doctor advised us that as the curve is 45 degree, it is better to do > it early, less risky, better recovery, what is your advice ?? he > said if we wait longer, the curve maybe even worst and even more > risky to do the surgery.? > > ? > > Btw, is there any other alternative we can do ? > > ? > > I am sorry to ask so many questions.? I really need?anyone who can? > share with me the experience.? Thanks.? Mee Ling > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2010 Report Share Posted May 16, 2010 I'm really glad to hear that your daughter is doing well. I do have a hump but I believe it's my ribcage. It's called crankshafting where your spine kind of spirals around your rods as a result of growth. So it happens more in people who are younger. I think it can be corrected with more surgery but it doesn't hurt or bother me so I don't worry about it. As for the leg contractures, I've had them before the surgery and they've never changed so I'm not sure. Hope this helps, Jade On May 15, 2010, at 9:08 PM, Foo Mee Ling <mlfooec@...> wrote: > Hi Jade, > Still remember I have asked for advice on my daughter scoliosis, > just to update, she finally had the operation in Nov last year. She > is doing fine now but noticed that she has a bit of hump on near her > right shoulder. Is that common for SMA kid ? Do you have problem > with the leg contracture ? My daughter couldn't straighten her legs > now. Any advice ? Thanks. Mee Ling > > > > From: Foo Mee Ling <mlfooec (DOT) com> > > Subject: Scoliosis Surgery > > @gro ups.com, smasmasupport (DOT) com > > Date: Saturday, November 29, 2008, 1:21 PM > > Dear All, > > My daughter, age 9 with SMA type II has?just been advised to undergo > the scoliosis surgery next year maybe in June or July.? It is > something which we don't expect to come so early (no doubt I know > that she will need to?go thru that eventually). Me and my husband > are still unprepared for this surgery.??I hope?anyone? can help to? > answer my questions below: > > ? > > 1) what type of implant should we consider ? the doctor said the > implant will be one time only and her back will be?fused/fixed so > she will not grow any taller on her upper limb.? is this the?only > choice she has???she is only 9, we really hope we can defer this > surgery...? > > 2) is there any other type of implant that she?will " grow " with her > height ?? maybe the type that she needs another surgery when she is > older ?? the doctor said, since she is wheelchair bound, so her > height is not something we should consider, that's why he > recommended this implant which need one time operation only.? but we > are really not sure > > 3) we have tried to tell the doctor to defer the surgery but the > doctor advised us that as the curve is 45 degree, it is better to do > it early, less risky, better recovery, what is your advice ?? he > said if we wait longer, the curve maybe even worst and even more > risky to do the surgery.? > > ? > > Btw, is there any other alternative we can do ? > > ? > > I am sorry to ask so many questions.? I really need?anyone who can? > share with me the experience.? Thanks.? Mee Ling > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2011 Report Share Posted May 21, 2011 I am having my first scoliosis surgery next month at the Hospital for Joint Diseases. Does anyone have any advice regarding preparation? Pearl Quote Link to comment Share on other sites More sharing options...
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