Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 I was 11 with my first, and 20 with my second. I had relatively the same complications both times, so it's been talked about that you fair better as a child with this surgery, generally speaking.....for me, it didn't matter. Brande mymocha@... > I am just wondering at what age did some of you have your first detether > surgery? Does anyone out there have a child who got detethered young? I > have a daughter who got detethered at 5 months, and so I am wondering if > this will help prevent some of the pain and problems that I read about. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 I was 23 and preparing for another surgery now. It doesn't matter what age you start. General rule is younger you start mire scar tissue more surgeries you end up neededinv think about it you mess with it young you need to fix it more often. If you ca. Hold out with out bowel bladder issues and pain the longer you don't need surges the fewer you will have. Once you start you usually have mote the. One. This message was sent from s' iPhone. Apologies if it does not format corectly. > I was 11 with my first, and 20 with my second. I had relatively the same > complications both times, so it's been talked about that you fair better as > a child with this surgery, generally speaking.....for me, it didn't matter. > > Brande > mymocha@... > > > I am just wondering at what age did some of you have your first detether > > surgery? Does anyone out there have a child who got detethered young? I > > have a daughter who got detethered at 5 months, and so I am wondering if > > this will help prevent some of the pain and problems that I read about. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 I appreciate your perspective, Lindsey! My son had surgery for a lipomyelomeningocele when he was 4 months old. I wish waiting and watching had at least been presented as an option to us, but it wasn't. However, considering the statistics presented at the time, I probably still would have chosen to do the surgery. Fortunately, the surgery seemed to go well for him without any immediate complications. Yet, here we are 8 years later developing bladder issues and scrutinizing a lower extremity. Although I could never be sure, my feeling is that we would have been here at this same time regardless. And if he had suffered losses sooner, I'm not so sure he would have been any worse off for it. It is quite traumatic to loose bladder function at 8 years old. It almost seems as if it would've been easier on him to have always had the problem. But, who am I to say? I tend to favor minimally invasive philosophies. Thus, the way I see it, what you see is what you get. Otherwise, surgery it is a risk and the outcomes are not guaranteed. Although I had originally hoped in vain surgery could remedy all of our problems, I am now somewhat relieved the opinion from our doctors at this point is to postpone surgery unless something changes. Maybe he will stabilize rather than progressing, I hope! > > > I was 11 with my first, and 20 with my second. I had relatively the same > > complications both times, so it's been talked about that you fair better as > > a child with this surgery, generally speaking.....for me, it didn't matter. > > > > Brande > > mymocha@... > > > > > I am just wondering at what age did some of you have your first detether > > > surgery? Does anyone out there have a child who got detethered young? I > > > have a daughter who got detethered at 5 months, and so I am wondering if > > > this will help prevent some of the pain and problems that I read about. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2011 Report Share Posted April 8, 2011 I'm so sorry to hear but I will state statistic wise if he's losing function now I'd opt for a surgery asap because once you lose it few it back it's like 1 out of a 100 gain anything back. But surgery is supposed to help postpone future loss As long as he remains Detethred! Best of luck to all of you! This message was sent from s' iPhone. Apologies if it does not format corectly. > I appreciate your perspective, Lindsey! My son had surgery for a lipomyelomeningocele when he was 4 months old. I wish waiting and watching had at least been presented as an option to us, but it wasn't. However, considering the statistics presented at the time, I probably still would have chosen to do the surgery. Fortunately, the surgery seemed to go well for him without any immediate complications. Yet, here we are 8 years later developing bladder issues and scrutinizing a lower extremity. > > Although I could never be sure, my feeling is that we would have been here at this same time regardless. And if he had suffered losses sooner, I'm not so sure he would have been any worse off for it. It is quite traumatic to loose bladder function at 8 years old. It almost seems as if it would've been easier on him to have always had the problem. But, who am I to say? > > I tend to favor minimally invasive philosophies. Thus, the way I see it, what you see is what you get. Otherwise, surgery it is a risk and the outcomes are not guaranteed. Although I had originally hoped in vain surgery could remedy all of our problems, I am now somewhat relieved the opinion from our doctors at this point is to postpone surgery unless something changes. Maybe he will stabilize rather than progressing, I hope! > > > > > > > I was 11 with my first, and 20 with my second. I had relatively the same > > > complications both times, so it's been talked about that you fair better as > > > a child with this surgery, generally speaking.....for me, it didn't matter. > > > > > > Brande > > > mymocha@... > > > > > > > I am just wondering at what age did some of you have your first detether > > > > surgery? Does anyone out there have a child who got detethered young? I > > > > have a daughter who got detethered at 5 months, and so I am wondering if > > > > this will help prevent some of the pain and problems that I read about. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2011 Report Share Posted April 8, 2011 Thanks. I realize that point of view too. But honestly, I think with this you are born with a predisposition to loose bladder and bowel function and possibly even the ability to walk. I can't change the way he was born. We did the surgery once when he was an infant, and he has still developed these issues. So, we'll see. Like , we don't want to risk making things even more difficult for him. Even our NS stated that if his bladder did in fact responded well to surgery, it still wouldn't ensure he wouldn't eventually end up in the same situation again later down the road. It's been hard to accept, but there are positives to focus on as well. Holly ________________________________ To: " tetheredspinalcord " <tetheredspinalcord > Sent: Thu, April 7, 2011 10:47:41 PM Subject: Re: Age of Detetherings I'm so sorry to hear but I will state statistic wise if he's losing function now I'd opt for a surgery asap because once you lose it few it back it's like 1 out of a 100 gain anything back. But surgery is supposed to help postpone future loss As long as he remains Detethred! Best of luck to all of you! This message was sent from s' iPhone. Apologies if it does not format corectly. > I appreciate your perspective, Lindsey! My son had surgery for a >lipomyelomeningocele when he was 4 months old. I wish waiting and watching had >at least been presented as an option to us, but it wasn't. However, considering >the statistics presented at the time, I probably still would have chosen to do >the surgery. Fortunately, the surgery seemed to go well for him without any >immediate complications. Yet, here we are 8 years later developing bladder >issues and scrutinizing a lower extremity. > > > Although I could never be sure, my feeling is that we would have been here at >this same time regardless. And if he had suffered losses sooner, I'm not so sure >he would have been any worse off for it. It is quite traumatic to loose bladder >function at 8 years old. It almost seems as if it would've been easier on him to >have always had the problem. But, who am I to say? > > > I tend to favor minimally invasive philosophies. Thus, the way I see it, what >you see is what you get. Otherwise, surgery it is a risk and the outcomes are >not guaranteed. Although I had originally hoped in vain surgery could remedy all >of our problems, I am now somewhat relieved the opinion from our doctors at this >point is to postpone surgery unless something changes. Maybe he will stabilize >rather than progressing, I hope! > > > > > > > I was 11 with my first, and 20 with my second. I had relatively the same > > > complications both times, so it's been talked about that you fair better as > > > > a child with this surgery, generally speaking.....for me, it didn't matter. > > > > > > Brande > > > mymocha@... > > > > > > > I am just wondering at what age did some of you have your first detether > > > > surgery? Does anyone out there have a child who got detethered young? I > > > > have a daughter who got detethered at 5 months, and so I am wondering if > > > > this will help prevent some of the pain and problems that I read about. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 I am 38 and have had 3 detethering surgeries, one at age 7, second one at age 11 and this last one at age 37,, I asked my NS the likleyhood of retethering again and he told me I shouldnt have anymore issue.. I wonder how true that is,, If they even know? Thanks e ________________________________ To: tetheredspinalcord Sent: Thu, April 7, 2011 11:14:15 PM Subject: Re: Age of Detetherings  Thanks. I realize that point of view too. But honestly, I think with this you are born with a predisposition to loose bladder and bowel function and possibly even the ability to walk. I can't change the way he was born. We did the surgery once when he was an infant, and he has still developed these issues. So, we'll see. Like , we don't want to risk making things even more difficult for him. Even our NS stated that if his bladder did in fact responded well to surgery, it still wouldn't ensure he wouldn't eventually end up in the same situation again later down the road. It's been hard to accept, but there are positives to focus on as well. Holly ________________________________ To: " tetheredspinalcord " <tetheredspinalcord > Sent: Thu, April 7, 2011 10:47:41 PM Subject: Re: Age of Detetherings I'm so sorry to hear but I will state statistic wise if he's losing function now I'd opt for a surgery asap because once you lose it few it back it's like 1 out of a 100 gain anything back. But surgery is supposed to help postpone future loss As long as he remains Detethred! Best of luck to all of you! This message was sent from s' iPhone. Apologies if it does not format corectly. > I appreciate your perspective, Lindsey! My son had surgery for a >lipomyelomeningocele when he was 4 months old. I wish waiting and watching had >at least been presented as an option to us, but it wasn't. However, considering >the statistics presented at the time, I probably still would have chosen to do >the surgery. Fortunately, the surgery seemed to go well for him without any >immediate complications. Yet, here we are 8 years later developing bladder >issues and scrutinizing a lower extremity. > > > Although I could never be sure, my feeling is that we would have been here at >this same time regardless. And if he had suffered losses sooner, I'm not so sure > >he would have been any worse off for it. It is quite traumatic to loose bladder >function at 8 years old. It almost seems as if it would've been easier on him to > >have always had the problem. But, who am I to say? > > > I tend to favor minimally invasive philosophies. Thus, the way I see it, what >you see is what you get. Otherwise, surgery it is a risk and the outcomes are >not guaranteed. Although I had originally hoped in vain surgery could remedy all > >of our problems, I am now somewhat relieved the opinion from our doctors at this > >point is to postpone surgery unless something changes. Maybe he will stabilize >rather than progressing, I hope! > > > > > > > I was 11 with my first, and 20 with my second. I had relatively the same > > > complications both times, so it's been talked about that you fair better as > > > > > a child with this surgery, generally speaking.....for me, it didn't matter. > > > > > > Brande > > > mymocha@... > > > > > > > I am just wondering at what age did some of you have your first detether > > > > surgery? Does anyone out there have a child who got detethered young? I > > > > have a daughter who got detethered at 5 months, and so I am wondering if > > > > this will help prevent some of the pain and problems that I read about. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 Hi e, I can't imagine they know .. I wonder if he is assuming that since you went for 20 years and now you no longer have one factor ie growth and perhaps no more pregnancies ? that your odds might be really good for no further surgeries but I am grasping. I think sadly they don't know. There are still some surgeons that will tell you that if you are done growing, you won't retether but we know that isn't the case. It is one factor that may contribute to retethering but it is only one and not the sole one..wish that it were. Randee In a message dated 4/9/2011 10:07:27 A.M. Central Daylight Time, krisbachman@... writes: I am 38 and have had 3 detethering surgeries, one at age 7, second one at age 11 and this last one at age 37,, I asked my NS the likleyhood of retethering again and he told me I shouldnt have anymore issue.. I wonder how true that is,, If they even know? Thanks e ________________________________ From: Holly <_bluegrass.momma@..._ (mailto:bluegrass.momma@...) > To: _tetheredspinalcord _ (mailto:tetheredspinalcord ) Sent: Thu, April 7, 2011 11:14:15 PM Subject: Re: Age of Detetherings Thanks. I realize that point of view too. But honestly, I think with this you are born with a predisposition to loose bladder and bowel function and possibly even the ability to walk. I can't change the way he was born. We did the surgery once when he was an infant, and he has still developed these issues. So, we'll see. Like , we don't want to risk making things even more difficult for him. Even our NS stated that if his bladder did in fact responded well to surgery, it still wouldn't ensure he wouldn't eventually end up in the same situation again later down the road. It's been hard to accept, but there are positives to focus on as well. Holly ________________________________ From: <_ltbunny192@..._ (mailto:ltbunny192@...) > To: " _tetheredspinalcord _ (mailto:tetheredspinalcord ) " <_tetheredspinalcord _ (mailto:tetheredspinalcord ) > Sent: Thu, April 7, 2011 10:47:41 PM Subject: Re: Age of Detetherings I'm so sorry to hear but I will state statistic wise if he's losing function now I'd opt for a surgery asap because once you lose it few it back it's like 1 out of a 100 gain anything back. But surgery is supposed to help postpone future loss As long as he remains Detethred! Best of luck to all of you! This message was sent from s' iPhone. Apologies if it does not format corectly. On Apr 7, 2011, at 1:30 PM, " bluegrass.momma " <_bluegrass.momma@..._ (mailto:bluegrass.momma@...) > wrote: > I appreciate your perspective, Lindsey! My son had surgery for a >lipomyelomeningocele when he was 4 months old. I wish waiting and watching had >at least been presented as an option to us, but it wasn't. However, considering >the statistics presented at the time, I probably still would have chosen to do >the surgery. Fortunately, the surgery seemed to go well for him without any >immediate complications. Yet, here we are 8 years later developing bladder >issues and scrutinizing a lower extremity. > > > Although I could never be sure, my feeling is that we would have been here at >this same time regardless. And if he had suffered losses sooner, I'm not so sure > >he would have been any worse off for it. It is quite traumatic to loose bladder >function at 8 years old. It almost seems as if it would've been easier on him to > >have always had the problem. But, who am I to say? > > > I tend to favor minimally invasive philosophies. Thus, the way I see it, what >you see is what you get. Otherwise, surgery it is a risk and the outcomes are >not guaranteed. Although I had originally hoped in vain surgery could remedy all > >of our problems, I am now somewhat relieved the opinion from our doctors at this > >point is to postpone surgery unless something changes. Maybe he will stabilize >rather than progressing, I hope! > > > > > > > I was 11 with my first, and 20 with my second. I had relatively the same > > > complications both times, so it's been talked about that you fair better as > > > > > a child with this surgery, generally speaking.....for me, it didn't matter. > > > > > > Brande > > > mymocha@... > > > > > > > I am just wondering at what age did some of you have your first detether > > > > surgery? Does anyone out there have a child who got detethered young? I > > > > have a daughter who got detethered at 5 months, and so I am wondering if > > > > this will help prevent some of the pain and problems that I read about. > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 Randee, It seems to me that if you are prone to retethering, you just are. There doesn't seem to be any rhyme or reason as to why one person retethers and another doesn't. Each NSG has his/her own (post)op techniques that they say helps prevent retethering. For my first NSG, he had me lay on a different side, front, back every 4 hours. The theory being that if you don't lay in one position for that long during the initial healing, the cord won't be in one place for the scar tissue to attach itself. He also used bovine pericardium dural graft. Lets see how well that worked - I retethered in 4 months (with symptoms the same/slightly worse than before the surgery). Turns out my body doesn't like bovine pericardium and after identifying it as a foreign substance/invader, it attacked it with scar tissue (try to encapsulate it - the body's natural defense mechanism). When I had my second untethering (1 1/2 yrs later - I really didn't want to do it) my NSG (different than the first) said it was far worse than he imagined based on films and symptoms. He said it was like someone poured bottles of super glue in my back. Personally, I think the (post)op techniques don't make a difference. If you are prone to making scar tissue and hence, retethering, then you just are. And if you are one of these people (like me), the more and more surgery just creates more and more scar tissue and makes things worse. Each time they do a subsequent surgery, they have to go up & down an additional level to find healthy tissue w/o scar tissue. For example, my inital tether was at L2. So, the second surgery involved L1-L3 and my third surgery involved T12-L4. Bigger surgery, bigger opening, more areas for scar tissue to form. These are just my opinions. Jenn > > > Hi e, > I can't imagine they know .. I wonder if he is assuming that since you > went for 20 years and now you no longer have one factor ie growth and > perhaps > no more pregnancies ? that your odds might be really good for no further > surgeries but I am grasping. I think sadly they don't know. There are > still some surgeons that will tell you that if you are done growing, you > won't retether but we know that isn't the case. It is one factor that may > contribute to retethering but it is only one and not the sole one..wish > that > it were. Randee > > > In a message dated 4/9/2011 10:07:27 A.M. Central Daylight Time, > krisbachman@... writes: > > I am 38 and have had 3 detethering surgeries, one at age 7, second one at > age 11 > and this last one at age 37,, I asked my NS the likleyhood of retethering > again > and he told me I shouldnt have anymore issue.. I wonder how true that is,, > If > they even know? > Thanks > e > > ________________________________ > From: Holly <_bluegrass.momma@..._ > (mailto:bluegrass.momma@...) > > To: _tetheredspinalcord _ > (mailto:tetheredspinalcord ) > Sent: Thu, April 7, 2011 11:14:15 PM > Subject: Re: Age of Detetherings > > Thanks. I realize that point of view too. But honestly, I think with this > you > are born with a predisposition to loose bladder and bowel function and > possibly > even the ability to walk. I can't change the way he was born. We did the > surgery once when he was an infant, and he has still developed these > issues. > So, we'll see. Like , we don't want to risk making things even more > difficult for him. Even our NS stated that if his bladder did in fact > responded > well to surgery, it still wouldn't ensure he wouldn't eventually end up in > the > same situation again later down the road. It's been hard to accept, but > there > are positives to focus on as well. > Holly > > ________________________________ > From: <_ltbunny192@..._ (mailto:ltbunny192@...) > > To: " _tetheredspinalcord _ > (mailto:tetheredspinalcord ) " < > _tetheredspinalcord _ > (mailto:tetheredspinalcord ) > > Sent: Thu, April 7, 2011 10:47:41 PM > Subject: Re: Age of Detetherings > > I'm so sorry to hear but I will state statistic wise if he's losing > function now > > I'd opt for a surgery asap because once you lose it few it back it's like > 1 out > of a 100 gain anything back. But surgery is supposed to help postpone > future > loss > As long as he remains Detethred! Best of luck to all of you! > > This message was sent from s' iPhone. Apologies if it does not > format > corectly. > > On Apr 7, 2011, at 1:30 PM, " bluegrass.momma " <_bluegrass.momma@..._ > > (mailto:bluegrass.momma@...) > wrote: > > > I appreciate your perspective, Lindsey! My son had surgery for a > >lipomyelomeningocele when he was 4 months old. I wish waiting and > watching had > >at least been presented as an option to us, but it wasn't. However, > considering > > >the statistics presented at the time, I probably still would have chosen > to do > >the surgery. Fortunately, the surgery seemed to go well for him without > any > >immediate complications. Yet, here we are 8 years later developing > bladder > >issues and scrutinizing a lower extremity. > > > > > > Although I could never be sure, my feeling is that we would have been > here at > >this same time regardless. And if he had suffered losses sooner, I'm not > so sure > > > >he would have been any worse off for it. It is quite traumatic to loose > bladder > > >function at 8 years old. It almost seems as if it would've been easier on > him to > > > >have always had the problem. But, who am I to say? > > > > > > I tend to favor minimally invasive philosophies. Thus, the way I see it, > what > >you see is what you get. Otherwise, surgery it is a risk and the outcomes > are > >not guaranteed. Although I had originally hoped in vain surgery could > remedy all > > > >of our problems, I am now somewhat relieved the opinion from our doctors > at this > > > >point is to postpone surgery unless something changes. Maybe he will > stabilize > >rather than progressing, I hope! > > > > > > > > > > > I was 11 with my first, and 20 with my second. I had relatively the > same > > > > complications both times, so it's been talked about that you fair > better as > > > > > > > > a child with this surgery, generally speaking.....for me, it didn't > matter. > > > > > > > > Brande > > > > mymocha@... > > > > > > > > > I am just wondering at what age did some of you have your first > detether > > > > > > surgery? Does anyone out there have a child who got detethered > young? I > > > > > have a daughter who got detethered at 5 months, and so I am > wondering if > > > > > > this will help prevent some of the pain and problems that I read > about. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 Jenn...I sure couldn't agree more..my daughter has had four detetherings between the ages of 14 and 20! Randee In a message dated 4/9/2011 1:50:45 P.M. Central Daylight Time, jlbobin@... writes: Randee, It seems to me that if you are prone to retethering, you just are. There doesn't seem to be any rhyme or reason as to why one person retethers and another doesn't. Each NSG has his/her own (post)op techniques that they say helps prevent retethering. For my first NSG, he had me lay on a different side, front, back every 4 hours. The theory being that if you don't lay in one position for that long during the initial healing, the cord won't be in one place for the scar tissue to attach itself. He also used bovine pericardium dural graft. Lets see how well that worked - I retethered in 4 months (with symptoms the same/slightly worse than before the surgery). Turns out my body doesn't like bovine pericardium and after identifying it as a foreign substance/invader, it attacked it with scar tissue (try to encapsulate it - the body's natural defense mechanism). When I had my second untethering (1 1/2 yrs later - I really didn't want to do it) my NSG (different than the first) said it was far worse than he imagined based on films and symptoms. He said it was like someone poured bottles of super glue in my back. Personally, I think the (post)op techniques don't make a difference. If you are prone to making scar tissue and hence, retethering, then you just are. And if you are one of these people (like me), the more and more surgery just creates more and more scar tissue and makes things worse. Each time they do a subsequent surgery, they have to go up & down an additional level to find healthy tissue w/o scar tissue. For example, my inital tether was at L2. So, the second surgery involved L1-L3 and my third surgery involved T12-L4. Bigger surgery, bigger opening, more areas for scar tissue to form. These are just my opinions. Jenn > > > Hi e, > I can't imagine they know .. I wonder if he is assuming that since you > went for 20 years and now you no longer have one factor ie growth and > perhaps > no more pregnancies ? that your odds might be really good for no further > surgeries but I am grasping. I think sadly they don't know. There are > still some surgeons that will tell you that if you are done growing, you > won't retether but we know that isn't the case. It is one factor that may > contribute to retethering but it is only one and not the sole one..wish > that > it were. Randee > > > In a message dated 4/9/2011 10:07:27 A.M. Central Daylight Time, > krisbachman@... writes: > > I am 38 and have had 3 detethering surgeries, one at age 7, second one at > age 11 > and this last one at age 37,, I asked my NS the likleyhood of retethering > again > and he told me I shouldnt have anymore issue.. I wonder how true that is,, > If > they even know? > Thanks > e > > ________________________________ > From: Holly <_bluegrass.momma@..._ > (mailto:bluegrass.momma@...) > > To: _tetheredspinalcord _ > (mailto:tetheredspinalcord ) > Sent: Thu, April 7, 2011 11:14:15 PM > Subject: Re: Age of Detetherings > > Thanks. I realize that point of view too. But honestly, I think with this > you > are born with a predisposition to loose bladder and bowel function and > possibly > even the ability to walk. I can't change the way he was born. We did the > surgery once when he was an infant, and he has still developed these > issues. > So, we'll see. Like , we don't want to risk making things even more > difficult for him. Even our NS stated that if his bladder did in fact > responded > well to surgery, it still wouldn't ensure he wouldn't eventually end up in > the > same situation again later down the road. It's been hard to accept, but > there > are positives to focus on as well. > Holly > > ________________________________ > From: <_ltbunny192@..._ (mailto:ltbunny192@...) > > To: " _tetheredspinalcord _ > (mailto:tetheredspinalcord ) " < > _tetheredspinalcord _ > (mailto:tetheredspinalcord ) > > Sent: Thu, April 7, 2011 10:47:41 PM > Subject: Re: Age of Detetherings > > I'm so sorry to hear but I will state statistic wise if he's losing > function now > > I'd opt for a surgery asap because once you lose it few it back it's like > 1 out > of a 100 gain anything back. But surgery is supposed to help postpone > future > loss > As long as he remains Detethred! Best of luck to all of you! > > This message was sent from s' iPhone. Apologies if it does not > format > corectly. > > On Apr 7, 2011, at 1:30 PM, " bluegrass.momma " <_bluegrass.momma@..._ > > (mailto:bluegrass.momma@...) > wrote: > > > I appreciate your perspective, Lindsey! My son had surgery for a > >lipomyelomeningocele when he was 4 months old. I wish waiting and > watching had > >at least been presented as an option to us, but it wasn't. However, > considering > > >the statistics presented at the time, I probably still would have chosen > to do > >the surgery. Fortunately, the surgery seemed to go well for him without > any > >immediate complications. Yet, here we are 8 years later developing > bladder > >issues and scrutinizing a lower extremity. > > > > > > Although I could never be sure, my feeling is that we would have been > here at > >this same time regardless. And if he had suffered losses sooner, I'm not > so sure > > > >he would have been any worse off for it. It is quite traumatic to loose > bladder > > >function at 8 years old. It almost seems as if it would've been easier on > him to > > > >have always had the problem. But, who am I to say? > > > > > > I tend to favor minimally invasive philosophies. Thus, the way I see it, > what > >you see is what you get. Otherwise, surgery it is a risk and the outcomes > are > >not guaranteed. Although I had originally hoped in vain surgery could > remedy all > > > >of our problems, I am now somewhat relieved the opinion from our doctors > at this > > > >point is to postpone surgery unless something changes. Maybe he will > stabilize > >rather than progressing, I hope! > > > > > > > > > > > I was 11 with my first, and 20 with my second. I had relatively the > same > > > > complications both times, so it's been talked about that you fair > better as > > > > > > > > a child with this surgery, generally speaking.....for me, it didn't > matter. > > > > > > > > Brande > > > > mymocha@... > > > > > > > > > I am just wondering at what age did some of you have your first > detether > > > > > > surgery? Does anyone out there have a child who got detethered > young? I > > > > > have a daughter who got detethered at 5 months, and so I am > wondering if > > > > > > this will help prevent some of the pain and problems that I read > about. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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