Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hello, I am new to this group. My son, 11 months, has a tethered cord (along with HIA and a few other things). Lately, I have been hearing a lot of people (on the Pull Thru list) saying that we should untether him even if he doesn't have any symptoms or pain, because he most likely will at some point. Our nuerosurgeon said he is fine and we don't even need to see him for another year. So now I don't know what to think. Should I get a second opinion? I was just wondering from some of you that have this that are adults if you wish you were untethered as a baby? Do you know if the surgery is easier on an infant than for an adult? I want to make the right choice for my son. Any advice would be welcomed. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hello, I am new to this group. My son, 11 months, has a tethered cord (along with HIA and a few other things). Lately, I have been hearing a lot of people (on the Pull Thru list) saying that we should untether him even if he doesn't have any symptoms or pain, because he most likely will at some point. Our nuerosurgeon said he is fine and we don't even need to see him for another year. So now I don't know what to think. Should I get a second opinion? I was just wondering from some of you that have this that are adults if you wish you were untethered as a baby? Do you know if the surgery is easier on an infant than for an adult? I want to make the right choice for my son. Any advice would be welcomed. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hi , I can only speak for my self. I am 38 and found out that I had TCS in OCT. I let a Doc do surgery and he was unsuccessful in untethering me. It was a bad experience. I found a New Doc through the Spinal Bifida Association in Washington, DC. I just had Dr. do the surgery which he was successful. I felt different as soon as I woke up. no pain in my ankles feet or between my shoulders and the numbness is gone in my left leg. It has only been 1 1/2 weeks since surgery. This surgery was a lot more pain free that my first one. I did not want to have surgery again but Everything that I read said that damage is done by the time you have symptoms. My Doc also told me it would not have been long before I would have been in a wheel chair. My Doc who did the surgery also wants to see my children and I am going to take them. ( my Mom had a baby the has spinal Bifida that died at 3 days old) I don't want them to go through what I went through all my life. My children are 14 and 11. There legs are hurting already so I am hoping it is just growing pains. (that is want they told my Mom and it was TCS). Where do you Live? I would recommend getting a second opinion and I would contact the spinal Bifida Association and ask for a referral. If you live close to Washington, DC Dr. is Very Good. He is Head of Neuro surgery at town University. I hope that helps, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hi , I can only speak for my self. I am 38 and found out that I had TCS in OCT. I let a Doc do surgery and he was unsuccessful in untethering me. It was a bad experience. I found a New Doc through the Spinal Bifida Association in Washington, DC. I just had Dr. do the surgery which he was successful. I felt different as soon as I woke up. no pain in my ankles feet or between my shoulders and the numbness is gone in my left leg. It has only been 1 1/2 weeks since surgery. This surgery was a lot more pain free that my first one. I did not want to have surgery again but Everything that I read said that damage is done by the time you have symptoms. My Doc also told me it would not have been long before I would have been in a wheel chair. My Doc who did the surgery also wants to see my children and I am going to take them. ( my Mom had a baby the has spinal Bifida that died at 3 days old) I don't want them to go through what I went through all my life. My children are 14 and 11. There legs are hurting already so I am hoping it is just growing pains. (that is want they told my Mom and it was TCS). Where do you Live? I would recommend getting a second opinion and I would contact the spinal Bifida Association and ask for a referral. If you live close to Washington, DC Dr. is Very Good. He is Head of Neuro surgery at town University. I hope that helps, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Just for a different opinion - I grew up knowing I had some sort of weird spina bifida - huge lipoma covered evreytthing. I had some neuro damage, but it was stable all the way until my mid 40s. My neurosurgeon says that some are rethinking the surgery when there are no symptoms. I'm hearing about children that are having more surgery 3-4 times, and still having problems. It wouldn't hurt to have a second opinion, but research carefully. How would his other problems affect the decision to have spinal cord surgery? Life is change, Growth is optional. Choose wisely. K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Just for a different opinion - I grew up knowing I had some sort of weird spina bifida - huge lipoma covered evreytthing. I had some neuro damage, but it was stable all the way until my mid 40s. My neurosurgeon says that some are rethinking the surgery when there are no symptoms. I'm hearing about children that are having more surgery 3-4 times, and still having problems. It wouldn't hurt to have a second opinion, but research carefully. How would his other problems affect the decision to have spinal cord surgery? Life is change, Growth is optional. Choose wisely. K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hello, My Daughter unfortuanetly was not diagnosed until she was 7, and there was a lot of irreversable damage, especially after she was diagnosed and we did a wait and see for 1 year, I wish I would have persued. I had no idea time was of the essense. I would definitely get a second opinon. By, the time I recieved the 2nd opinoin, he could not understand why the other NSG waited. Well, Good Luck! Tommi - In tetheredspinalcord@y..., macandzach@a... wrote: > Hello, > > I am new to this group. My son, 11 months, has a tethered cord (along with > HIA and a few other things). Lately, I have been hearing a lot of people (on > the Pull Thru list) saying that we should untether him even if he doesn't > have any symptoms or pain, because he most likely will at some point. Our > nuerosurgeon said he is fine and we don't even need to see him for another > year. So now I don't know what to think. Should I get a second opinion? I > was just wondering from some of you that have this that are adults if you > wish you were untethered as a baby? Do you know if the surgery is easier on > an infant than for an adult? I want to make the right choice for my son. > Any advice would be welcomed. > Thank you, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hello, My Daughter unfortuanetly was not diagnosed until she was 7, and there was a lot of irreversable damage, especially after she was diagnosed and we did a wait and see for 1 year, I wish I would have persued. I had no idea time was of the essense. I would definitely get a second opinon. By, the time I recieved the 2nd opinoin, he could not understand why the other NSG waited. Well, Good Luck! Tommi - In tetheredspinalcord@y..., macandzach@a... wrote: > Hello, > > I am new to this group. My son, 11 months, has a tethered cord (along with > HIA and a few other things). Lately, I have been hearing a lot of people (on > the Pull Thru list) saying that we should untether him even if he doesn't > have any symptoms or pain, because he most likely will at some point. Our > nuerosurgeon said he is fine and we don't even need to see him for another > year. So now I don't know what to think. Should I get a second opinion? I > was just wondering from some of you that have this that are adults if you > wish you were untethered as a baby? Do you know if the surgery is easier on > an infant than for an adult? I want to make the right choice for my son. > Any advice would be welcomed. > Thank you, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Thank you everyone that expressed your opinions. It's good to hear both sides. I guess I have a lot of thinking to do with my husband and our surgeon and I think I will seek a second opinion just for sanity's sake. ~Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 No problem, I'll answer. No, the reason I am in a Wheelchair is because of Complications with the Detethering Surgery, not because of Tethered Cord alone. I don't know if Tethered Cord alone can put somebody strictly in a Wheelchair.......I'm thinking that it could, but it would take quite awhile before you would have to strictly use one, but I am not completely for sure. Yes, it does make sense. And I, personally, don't think there is anybody yet who completely knows all of what Tethered Cord.....etc can do. I can't say for sure if it would be wise, then again I am not in your situation, to start using a Wheelchair just to avoid Surgery. I don't think that would completely avoid Surgery, anyway, maybe for a certain amount of time, but not completely. Just my opinion, though. Hope this helps. Me mymocha@... > Brande I had a question for you, of course you don't have to answer. > From your response it sounds liek the reason you are using a wheelchair is > caused from the tethered cord? I guesss I am just wondering if this condition > can limit mobility to the point of needing a wheelchair (before or after > surgery) Does that make sense? I guess I just don't know what the total > effects are of this and how my life can /will be.I mean perhaps if my > mobility gets completely bad I should consider using a chair instead of > surgery and trying to get apin control. Ugh. I wish I had that crystal ball! > It wold make things a lot easier! > I --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 8/3/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 No problem, I'll answer. No, the reason I am in a Wheelchair is because of Complications with the Detethering Surgery, not because of Tethered Cord alone. I don't know if Tethered Cord alone can put somebody strictly in a Wheelchair.......I'm thinking that it could, but it would take quite awhile before you would have to strictly use one, but I am not completely for sure. Yes, it does make sense. And I, personally, don't think there is anybody yet who completely knows all of what Tethered Cord.....etc can do. I can't say for sure if it would be wise, then again I am not in your situation, to start using a Wheelchair just to avoid Surgery. I don't think that would completely avoid Surgery, anyway, maybe for a certain amount of time, but not completely. Just my opinion, though. Hope this helps. Me mymocha@... > Brande I had a question for you, of course you don't have to answer. > From your response it sounds liek the reason you are using a wheelchair is > caused from the tethered cord? I guesss I am just wondering if this condition > can limit mobility to the point of needing a wheelchair (before or after > surgery) Does that make sense? I guess I just don't know what the total > effects are of this and how my life can /will be.I mean perhaps if my > mobility gets completely bad I should consider using a chair instead of > surgery and trying to get apin control. Ugh. I wish I had that crystal ball! > It wold make things a lot easier! > I --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 8/3/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 I am sure tethered cord alone can impair mobility to the point of needing a wheelchair. I had surgery to prevent or put off needing a wheelchair. Loss of function is common in TCS. How much function can be lost? I hate to even imagine. I bet a LOT. --- Brande wrote: > No problem, I'll answer. No, the reason I am in a > Wheelchair is because of > Complications with the Detethering Surgery, not > because of Tethered Cord > alone. > I don't know if Tethered Cord alone can put somebody > strictly in a > Wheelchair.......I'm thinking that it could, but it > would take quite awhile > before you would have to strictly use one, but I am > not completely for sure. > > Yes, it does make sense. And I, personally, don't > think there is anybody yet > who completely knows all of what Tethered > Cord.....etc can do. > > I can't say for sure if it would be wise, then again > I am not in your > situation, to start using a Wheelchair just to avoid > Surgery. I don't think > that would completely avoid Surgery, anyway, maybe > for a certain amount of > time, but not completely. Just my opinion, though. > > Hope this helps. > > Me > mymocha@... > > > Brande I had a question for you, of course > you don't have to answer. > > From your response it sounds liek the reason you > are using a wheelchair is > > caused from the tethered cord? I guesss I am just > wondering if this > condition > > can limit mobility to the point of needing a > wheelchair (before or after > > surgery) Does that make sense? I guess I just > don't know what the total > > effects are of this and how my life can /will be.I > mean perhaps if my > > mobility gets completely bad I should consider > using a chair instead of > > surgery and trying to get apin control. Ugh. I > wish I had that crystal > ball! > > It wold make things a lot easier! > > I > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system > (http://www.grisoft.com). > Version: 6.0.381 / Virus Database: 214 - Release > Date: 8/3/2002 > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 I am sure tethered cord alone can impair mobility to the point of needing a wheelchair. I had surgery to prevent or put off needing a wheelchair. Loss of function is common in TCS. How much function can be lost? I hate to even imagine. I bet a LOT. --- Brande wrote: > No problem, I'll answer. No, the reason I am in a > Wheelchair is because of > Complications with the Detethering Surgery, not > because of Tethered Cord > alone. > I don't know if Tethered Cord alone can put somebody > strictly in a > Wheelchair.......I'm thinking that it could, but it > would take quite awhile > before you would have to strictly use one, but I am > not completely for sure. > > Yes, it does make sense. And I, personally, don't > think there is anybody yet > who completely knows all of what Tethered > Cord.....etc can do. > > I can't say for sure if it would be wise, then again > I am not in your > situation, to start using a Wheelchair just to avoid > Surgery. I don't think > that would completely avoid Surgery, anyway, maybe > for a certain amount of > time, but not completely. Just my opinion, though. > > Hope this helps. > > Me > mymocha@... > > > Brande I had a question for you, of course > you don't have to answer. > > From your response it sounds liek the reason you > are using a wheelchair is > > caused from the tethered cord? I guesss I am just > wondering if this > condition > > can limit mobility to the point of needing a > wheelchair (before or after > > surgery) Does that make sense? I guess I just > don't know what the total > > effects are of this and how my life can /will be.I > mean perhaps if my > > mobility gets completely bad I should consider > using a chair instead of > > surgery and trying to get apin control. Ugh. I > wish I had that crystal > ball! > > It wold make things a lot easier! > > I > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system > (http://www.grisoft.com). > Version: 6.0.381 / Virus Database: 214 - Release > Date: 8/3/2002 > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Personally, I would listen to your Child's Neurosurgeon, and your own instincts first. I think your son's Neurosurgeon is right on track. I personally am happy to hear he is taking a wait and see approach, especially when there are no Symptoms. When and if Symptoms should start, then reconsider, but don't necessarily jump into Surgery right away. Second Opinions are always good.....nothing wrong with that. No, I thank God that I was not Untetethered eariler then what I was. My first Detethering was when I was 11. But that is my Situation and my Opinion. There are Babies who DO NEED to be Untethered when they are Babies, but not all. I can't say for sure if the Surgery is easier on Children rather then Adults. I've heard it is easier on Children, but can't say for sure. Everybody's different. Hope this helps. Me mymocha@... Lately, I have been hearing a lot of people (on > the Pull Thru list) saying that we should untether him even if he doesn't > have any symptoms or pain, because he most likely will at some point. Our > nuerosurgeon said he is fine and we don't even need to see him for another > year. So now I don't know what to think. Should I get a second opinion? I > was just wondering from some of you that have this that are adults if you > wish you were untethered as a baby? Do you know if the surgery is easier on > an infant than for an adult? --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 8/3/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Personally, I would listen to your Child's Neurosurgeon, and your own instincts first. I think your son's Neurosurgeon is right on track. I personally am happy to hear he is taking a wait and see approach, especially when there are no Symptoms. When and if Symptoms should start, then reconsider, but don't necessarily jump into Surgery right away. Second Opinions are always good.....nothing wrong with that. No, I thank God that I was not Untetethered eariler then what I was. My first Detethering was when I was 11. But that is my Situation and my Opinion. There are Babies who DO NEED to be Untethered when they are Babies, but not all. I can't say for sure if the Surgery is easier on Children rather then Adults. I've heard it is easier on Children, but can't say for sure. Everybody's different. Hope this helps. Me mymocha@... Lately, I have been hearing a lot of people (on > the Pull Thru list) saying that we should untether him even if he doesn't > have any symptoms or pain, because he most likely will at some point. Our > nuerosurgeon said he is fine and we don't even need to see him for another > year. So now I don't know what to think. Should I get a second opinion? I > was just wondering from some of you that have this that are adults if you > wish you were untethered as a baby? Do you know if the surgery is easier on > an infant than for an adult? --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 8/3/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Maybe I answered the Question wrong. I was thinking she meant that Tethered Cord alone could progress to complete mobility Paralysis where there is absolutely no way a person could Stand and atleast take a few Steps. But being in a Wheelchair to make things easier when gettting up to Stand and Walk is much much harder, and it is better for you to be in a Wheelchair is another story. No doubt, , that loss of Function in Tethered Cord is common. There is definately the potential to lose alot of Function with Tethered Cord. Me mymocha@... > I am sure tethered cord alone can impair mobility to > the point of needing a wheelchair. I had surgery to > prevent or put off needing a wheelchair. Loss of > function is common in TCS. How much function can be > lost? I hate to even imagine. I bet a LOT. > > > No problem, I'll answer. No, the reason I am in a > > Wheelchair is because of > > Complications with the Detethering Surgery, not > > because of Tethered Cord > > alone. > > I don't know if Tethered Cord alone can put somebody > > strictly in a > > Wheelchair.......I'm thinking that it could, but it > > would take quite awhile > > before you would have to strictly use one, but I am > > not completely for sure. > > > > Yes, it does make sense. And I, personally, don't > > think there is anybody yet > > who completely knows all of what Tethered > > Cord.....etc can do. > > > > I can't say for sure if it would be wise, then again > > I am not in your > > situation, to start using a Wheelchair just to avoid > > Surgery. I don't think > > that would completely avoid Surgery, anyway, maybe > > for a certain amount of > > time, but not completely. Just my opinion, though. > > > > > Brande I had a question for you, of course > > you don't have to answer. > > > From your response it sounds liek the reason you > > are using a wheelchair is > > > caused from the tethered cord? I guesss I am just > > wondering if this > > condition > > > can limit mobility to the point of needing a > > wheelchair (before or after > > > surgery) Does that make sense? I guess I just > > don't know what the total > > > effects are of this and how my life can /will be.I > > mean perhaps if my > > > mobility gets completely bad I should consider > > using a chair instead of > > > surgery and trying to get apin control. Ugh. I > > wish I had that crystal > > ball! > > > It wold make things a lot easier! > > > I > --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 8/3/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 I guess I just don't consider being in a wheelchair the same as being paralyzed or completely immobile. Many people use a wheelchair to get around, even though they do have some mobility. But even at that, I'm not sure I would say that you can't become so symptomatic that it would make walking impossible. I can envision it, though I wouldn't say it was probable. Just possible. --- Brande wrote: > Maybe I answered the Question wrong. I was thinking > she meant that Tethered > Cord alone could progress to complete mobility > Paralysis where there is > absolutely no way a person could Stand and atleast > take a few Steps. But > being in a Wheelchair to make things easier when > gettting up to Stand and > Walk is much much harder, and it is better for you > to be in a Wheelchair is > another story. > > No doubt, , that loss of Function in > Tethered Cord is common. > > There is definately the potential to lose alot of > Function with Tethered > Cord. > > Me > mymocha@... > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 I'm sure not. I don't even think I thought that way, until it became my Situation. You're right, people do. I used to too. But now I think about it differently. I don't know if it is possible, that's why I said I didn't know. Not saying it can't happen, I just don't know for sure. Me mymocha@... > I guess I just don't consider being in a wheelchair > the same as being paralyzed or completely immobile. > Many people use a wheelchair to get around, even > though they do have some mobility. But even at that, > I'm not sure I would say that you can't become so > symptomatic that it would make walking impossible. I > can envision it, though I wouldn't say it was > probable. Just possible. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 8/3/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Don't you just LOVE the uncertainty that goes along with TCS?? I know I sure do. It's the wonderful surprises that make it the disorder that just keeps on giving. ) --- Brande wrote: > I'm sure not. I don't even think I thought that way, > until it became my > Situation. You're right, people do. I used to too. > But now I think about it > differently. I don't know if it is possible, that's > why I said I didn't > know. Not saying it can't happen, I just don't know > for sure. > > Me > mymocha@... > > > > > I guess I just don't consider being in a > wheelchair > > the same as being paralyzed or completely > immobile. > > Many people use a wheelchair to get around, even > > though they do have some mobility. But even at > that, > > I'm not sure I would say that you can't become so > > symptomatic that it would make walking impossible. > I > > can envision it, though I wouldn't say it was > > probable. Just possible. > > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system > (http://www.grisoft.com). > Version: 6.0.381 / Virus Database: 214 - Release > Date: 8/3/2002 > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Tell me about it!! lol I wish there was one way to tell for sure or not. Me mymocha@... > Don't you just LOVE the uncertainty that goes along > with TCS?? I know I sure do. It's the wonderful > surprises that make it the disorder that just keeps on > giving. ) --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 8/3/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 At 01:14 PM 8/16/2002 -0700, Weaver wrote: >Don't you just LOVE the uncertainty that goes along >with TCS?? I know I sure do. It's the wonderful >surprises that make it the disorder that just keeps on >giving. ) How about 'just keeps on taking' ) R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hi . I have only had one back surgery, and that was at 13. It wasn't for tethered cord, but they worked in the area where I am tethered. So, I believe I am tethered at the bottom from birth, and then around L4. I had signs when I was a youngster. I think the hydrocephalus was secondary, but I am not a neuro ;o)... From the tethered cord alone, my spine began to curve quite severely.. by the time I was 13yrs, I had a 115 Degree curve. However, you could see that happening over time. When I was about 6 or 7, the tendon in the back of my lower leg started to tighten, til I was walking almost on my tippy toes. They released that. Somewhere around 11 or 12, I started having bad pains in my hips and thighs. A lady I know in my hometown also developed hydro, but she walked fine and everything was great until she was 11 or so. It was her shunt backing up that caused her grief.. but it affected her lower limbs as well. Perhaps if her shunt hadn't acted up (or I should say, if the dr had of been in town and she would have had surgery lickety split,) she would still have function today. I haven't talked to her in awhile.. but she was starting to regain her walking again. My opinion of whether it's easier on kids than adults is, #1, even if this is " hard " on your son now if you have the surgery, he will never remember it. Older kids and adults will. #2, I think kids heal faster. The younger the body, the quicker the healing process. I think that makes sense. However, holding off is a way of buying time. Sometimes that is a good thing too. Maybe your child will be able to have a " normal " childhood if the spine isn't comprimised (anymore than it can be now). Although there are adults here who end up having problems later in life, there are also adults who never knew.... lived a normal life, hiked and biked and went wild as people like to do ;o) Right now, my spine is being comprimised by a cyst. However, drs say it's the tether that is causing the cyst, and to detether would be their suggestion (if I have it done) to see if the cyst will take care of itself. I have had a surgery at birth for a shunt in the lumbar region, and my surgery at 13. I think there's a lot of wonderful mess in there! I don't want them touching it. I have already lost mostly all the feeling from the T5 level down. I can walk with lower leg braces (something that happened at my spine surgery though) still. I can tell my walking is getting worse. Some days are worse than others. All in all, above and beyond the nerve damage caused by my back surgery 22yrs ago, the only new symptom of the cyst is sensation loss. I have NO pain and NO spasms. Pain is a big deal for me! I can sit for the rest of my life if it means no pain. My birth defect being a tight filum, unless it was the easy " snip " I am glad they didn't touch me, for that reason anyway. Laurie lauray@... " If you judge people, you have no time to love them. " -Mother Theresa Re: surgery Hello, I am new to this group. My son, 11 months, has a tethered cord (along with HIA and a few other things). Lately, I have been hearing a lot of people (on the Pull Thru list) saying that we should untether him even if he doesn't have any symptoms or pain, because he most likely will at some point. Our nuerosurgeon said he is fine and we don't even need to see him for another year. So now I don't know what to think. Should I get a second opinion? I was just wondering from some of you that have this that are adults if you wish you were untethered as a baby? Do you know if the surgery is easier on an infant than for an adult? I want to make the right choice for my son. Any advice would be welcomed. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 Hi , My son was detethered 6 weeks ago when he was 3 months old. He had a lumbar dimple and the MRI detected a tethered cord = other than that, no discernable symptoms. He's doing really great! He was in the hospital 4 days and seems completely recovered from surgery now. He hasn't had any follow up tests yet, but he seems perfectly normal. I know there are differing opinions among the nsgs about this, but our nsg didn't even hesitate. Obviously he convinced us. While it's too early to evaluate long term, I'm very pleased with our decision. I don't know about you, but I would have spent everyday wondering if the tethered cord was causing irreparable damage and had I made a mistake by not being proactive. I'm just that type of person to dwell and obsess. I would seek a second opinion if I were you. It's hard to say what to do in these situations, but I'm unable to hang back and be passive about this. My neurosurgeon is Arnold Menezes at University of Iowa Hospitals in Iowa City IA. I highly recommend him if you're in the area. Email me if you want specifics on Cade's surgery and recovery. By the way, from what I've read here, the surgery seems much easier on an infant than an adult. Thanks, Dixie > Hello, > > I am new to this group. My son, 11 months, has a tethered cord (along with > HIA and a few other things). Lately, I have been hearing a lot of people (on > the Pull Thru list) saying that we should untether him even if he doesn't > have any symptoms or pain, because he most likely will at some point. Our > nuerosurgeon said he is fine and we don't even need to see him for another > year. So now I don't know what to think. Should I get a second opinion? I > was just wondering from some of you that have this that are adults if you > wish you were untethered as a baby? Do you know if the surgery is easier on > an infant than for an adult? I want to make the right choice for my son. > Any advice would be welcomed. > Thank you, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Hi Nina, Thank you so much for this list of questions. It's always good to check in with other people before heading off to the doctor in a situation like this. Knowing me, the only questions I'd have for him about my surgery would be, " When when when? And by the way...when? " I was told during my first visit that I would be on my back for 5 days after surgery. I'm on another tcs mailing list where they talk a lot about this condition in children. One little girl was de-tethered last week and was up and running (!) within only a couple of days. Oh, to be a child again... (But actually, the 5 days might not be so bad. Forced R & R!) Rick, you probably won't get this until after your foot surgery, but best wishes for a speedy recovery! Hope you all have a wonderful day, Debbie Nina Bunton writes: > Hi Debbie, nice to see a new person on the list. > > Some of the questions you might want to ask are > > *the approximate pain relief you might get; > *the amount of motor function you may preserve/recover; > *care immediately post-op, ESPECIALLY the time you need to lie flat in > bed (that seems to be a moot point from people on this list - some got > up too early, some were told 5 days flat and benefitted from it); > *amount of activity, including walking v resting you should do for a > good long-term recovery; > *pain relief (how much, what type, PCA, how long) > *what to expect with spinal headaches > > Goodness, I could go on for ages, as all these questions and more were > buzzing round my head before my surgery! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 , Thanks for replying back. Dr. Moriarty is doing my son's surgery. I think I spelled it right. That's cool that you live in Kentucky too...what city? That's I expect my son started having problems. His systoms are seizures, breathing trouble, migraines, back pain, and neck pain that I can think of right now. He's tethered in the lower spine somewhere around S2. How did your daughters surgery go? -Marie Quote Link to comment Share on other sites More sharing options...
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