Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 I am in the same situation with my son. He was born on 08/24/2006 with tethered spinal cord and it was only found because he was also born with an imperforated anus. He shows no signs of having the tc but we will the NS on 11/30 to find out more and to discuss surgery. I would also like to know if their are any sucess stories out there if this is found early. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Hi, Hope things are going well with you. Well my name is Tracey, I am 39 yrs old, I was born with both tethered cord and Spina Bifida Occulta, it is acctually very managable most times, I didnt find out I had either of these until 2 years ago. I had my detethering a year ago, it has helped some but not as much as I would have liked it to but I am glad I had it done none the less because it keeps from further damage to continue, it is good that they caught this so early on can you please tell me what led you to look into this to find that your baby had this. I do want to pass on some information though that is very important. Please Please go to a very good doctor, and also please have them check your baby for Arnold Chiari Malformation Type 2, this is a brain condition(disease) that is associated with spina bifida and tethered cord and it sometimes hard for some doctors to see because this is very rare and they are not schooled in this disease, I have Chiari, I am not so lucky I can't have the brain surgery done because I have a type of Hemophelia. Your baby may very well not have this and I don't mean to scare you it's just I feel that I owe to you and your baby to be completely honest so you can get the best care needed. If you let me know where you are if you are close to my neurosurgeon you can see him he is one of the best in these diseases he is also a pediatric neurosurgeon, 25% of his patients are adults because these things are so rare. If you have any questions please feel free to ask I will answer them if I can. Hope all is well with that beautiful baby of yours oh also I still have bladder control and I can walk no wheel chairs for me I do have alot of pain though. Sincerely, Tracey s ACM2 11mm Spina Bifida Tethered Cord-Detethered Nov. 2, 2005 Ehlers Danlos Syndrome Fibromyalgia Von Willebrand Disease Born with Dislocated Elbows --------------------------------- Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi ..Glad to hear your 3 year old is doing well. Were all 6 surgeries due to tethered cord? What symptoms did she have at that age that suggested they go back in? Why do they think she will have any bowel/bladder issues if she has been untethered? Thanks for any input. Randee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi, Our daughter Norah who will be 3 tomorrow had a spinal cord release at 5 months of age. Norah's tether went undiagonsed and was caught as a " fluke " while she was having surgery for hip dysplasia. She does not have spina bifida. That being said, she is doing extremely well. Our surgeon and urologist are predicting a significant delay in potty training, but are hopeful that she will have some bowel / bladder control. Every case is different, but we do not regret having gone through the surgery with our daughter at the early age. You will make it through these difficult times (we've had 6 surgeries in total). Please continue to ask questions and feel free to email me directly if you want more info about what the surgery is like at that age. I'd be glad to share. All the Best, Mom to Norah > > My girl was born September 11, 2006 and has been diagnosed with TSC > (also spina bifida occulta) and I have been advised that she will > require surgery. We are looking at surgery as early as January 2007. > Currently I don't believe she has any symptoms but really don't know > if she has bowel / bladder control. > > Just looking for some parental reassurance that this condition is > manageable as we continue into the world of surgery and dealing with > this condition as she grows. > > Thanks in advance for any information. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 My daughter had no potty training issues either. Good luck!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Just a note that not all kids with TCS have potty training delays. I potty trained at 18 months, much earlier than my siblings without tethered cord issues. I had some incontinence issues, but only when I laughed too hard or got too scared. I had those issues until I was 26 and started losing bladder function. It wasn't a huge deal and no one thought to look into why it might have been happening to me. I think it's great that so many kids now won't grow up thinking they are lazy or bad for that kind of thing. But I didn't have any trouble potty training and never had bowel issues. Hopefully your daughter will surprise you! HAPPY BIRTHDAY NORAH!! --- wrote: > Hi, Our daughter Norah who will be 3 tomorrow had a > spinal cord > release at 5 months of age. Norah's tether went > undiagonsed and was > caught as a " fluke " while she was having surgery for > hip dysplasia. > She does not have spina bifida. That being said, > she is doing > extremely well. Our surgeon and urologist are > predicting a > significant delay in potty training, but are hopeful > that she will > have some bowel / bladder control. Every case is > different, but we do > not regret having gone through the surgery with our > daughter at the > early age. You will make it through these difficult > times (we've had > 6 surgeries in total). Please continue to ask > questions and feel free > to email me directly if you want more info about > what the surgery is > like at that age. I'd be glad to share. > > All the Best, > > Mom to Norah > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Randee: Only one of Norah's surgeries was for tethered cord. 4 were for orthopedic issues and one was a ureteral reimplantation surgery for urinary reflux. Although our surgeon feels that the surgery was very successful, the level of her tether makes her likely to have bowel and bladder issues b/c of reduced sensation in that area (neurogenic bowel / bladder) and reduced ability to empty the bladder fully on her own. Your surgeon should be able to give you a sense of what issues you might be dealing with post surgery...based on where the tether was etc. We were having to cath Norah for about a year, but our urologist has d/c this b/c he feels that she has a shot at potty training although it might be delayed. Lately her studies have shown an increased ability to fully empty her own bladder, so we are hopeful. The type of tether also helps predict whether or not there will be a retether in the future. Our neurosurgeon says that Norah has a less than 1% chance of retether in the future, which is excellent considering what many of the folks on this board have dealt with...hope this helps. > > Hi ..Glad to hear your 3 year old is doing well. Were all 6 > surgeries due to tethered cord? What symptoms did she have at that age that > suggested they go back in? Why do they think she will have any bowel/bladder issues > if she has been untethered? Thanks for any input. > Randee > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Has your son undergone any surgery to this point? Did your son get an MRI to discover the tethered cord? > > I am in the same situation with my son. He was born on 08/24/2006 with > tethered spinal cord and it was only found because he was also born > with an imperforated anus. He shows no signs of having the tc but we > will the NS on 11/30 to find out more and to discuss surgery. I would > also like to know if their are any sucess stories out there if this is > found early. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 I think there are probably a lot of success stories. We just don't hear much about them here because the people who are here are usually here either because they are new to the disorder and need information or they aren't a success story and need support. We have many members who join, have surgery, then go off to live their lives happy and well. I was born with tethered cord and had no problems until I was 20. I didn't have surgery as a child, and maybe that would have helped me avoid problems forever. Maybe not. I think it's too early to really know how long surgery on infants for this will help. The surgical techniques of today are much better than those of 35 years ago, but also, there just aren't many people my age (38) who had surgery on their tethered cord as a very young child. The other thing about success, it all depends on how you measure it. And how long you expect it to last. I consider myself to be pretty lucky. I have pain, but I still can live a very full and normal life. I much prefer what I have to what some people around me have. I'll take my limp and bladder issues over someone's tremors from Parkinsons any day. Of course, someone with Parkinsons might say the same of my limp and bladder issues - they'd prefer their tremors. It's all relative, and people who don't have any physical issues measure success very differently, I think, than those of us who do have those issues. I also think that people with " normal " children (like me) might not remember that it could change at any moment. I have a severely disabled nephew who was born perfectly healthy and normal. One night, a high fever, a seizure, and his life changed forever. I think I enjoy what I have so much because I know that tethered cord or not, what I have might just be taken away or replaced with something much less (or more) pleasant. I don't dwell on it. Just because my neighbor at work is healthy today doesn't mean he will be tomorrow either and I don't see him dwelling on it. Does that make any sense? I hope there are a few parents on here whose children had surgery long enough ago to set your mind at ease a bit. As parents, we make the best choices we can, and then we have to watch as our children thrive anyway. It's amazing how resilient those little buggers are! > > > > I am in the same situation with my son. He was > born on 08/24/2006 > with > > tethered spinal cord and it was only found because > he was also born > > with an imperforated anus. He shows no signs of > having the tc but we > > will the NS on 11/30 to find out more and to > discuss surgery. I > would > > also like to know if their are any sucess stories > out there if this > is > > found early. > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 , You are becoming quit the philosopher!! Very well put! Once again, thanks for the encouraging words..... You could start your own website... 'sencouragement.com Thank you, Thank you!! Just what I needed right now, it made me cancel my pitty party!!(So you all are uninvited)! Tommi --- Weaver wrote: > I think there are probably a lot of success stories. > We just don't hear much about them here because the > people who are here are usually here either because > they are new to the disorder and need information or > they aren't a success story and need support. We > have > many members who join, have surgery, then go off to > live their lives happy and well. > > I was born with tethered cord and had no problems > until I was 20. I didn't have surgery as a child, > and > maybe that would have helped me avoid problems > forever. Maybe not. I think it's too early to > really > know how long surgery on infants for this will help. > > The surgical techniques of today are much better > than > those of 35 years ago, but also, there just aren't > many people my age (38) who had surgery on their > tethered cord as a very young child. > > The other thing about success, it all depends on how > you measure it. And how long you expect it to last. > I > consider myself to be pretty lucky. I have pain, > but > I still can live a very full and normal life. I > much > prefer what I have to what some people around me > have. > I'll take my limp and bladder issues over someone's > tremors from Parkinsons any day. Of course, someone > with Parkinsons might say the same of my limp and > bladder issues - they'd prefer their tremors. > > It's all relative, and people who don't have any > physical issues measure success very differently, I > think, than those of us who do have those issues. I > also think that people with " normal " children (like > me) might not remember that it could change at any > moment. I have a severely disabled nephew who was > born perfectly healthy and normal. One night, a > high > fever, a seizure, and his life changed forever. I > think I enjoy what I have so much because I know > that > tethered cord or not, what I have might just be > taken > away or replaced with something much less (or more) > pleasant. I don't dwell on it. Just because my > neighbor at work is healthy today doesn't mean he > will > be tomorrow either and I don't see him dwelling on > it. > Does that make any sense? > > I hope there are a few parents on here whose > children > had surgery long enough ago to set your mind at ease > a > bit. As parents, we make the best choices we can, > and > then we have to watch as our children thrive anyway. > > It's amazing how resilient those little buggers are! > > > > > > > > > > > I am in the same situation with my son. He was > > born on 08/24/2006 > > with > > > tethered spinal cord and it was only found > because > > he was also born > > > with an imperforated anus. He shows no signs of > > having the tc but we > > > will the NS on 11/30 to find out more and to > > discuss surgery. I > > would > > > also like to know if their are any sucess > stories > > out there if this > > is > > > found early. > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 - Thank you for the post, you are so right in saying that you never know what will happen. We lost our first child a little girl who came into the world to soon so my second pregnancy was high risk the entire way with me being put into the hospital at 19 weeks then bed rest from there out. Once we made it to the day of inducement we thought nothing else could go wrong until my son Garren was born and they rushed the NIC doctors into the room when they discovered his imperforated anus. Next thing we know he and my husband are being rushed to a nearby children's hospital to be seen by surgeons. Long story short he had surgery the next day for the imperforated anus and made it through like a champ but they continued to run test ultrasounds cat scans MRI looking for things normally found with the imperforated anus and that is when they found the tethered cord. The only thing we have been told so far is that his spinal cord is tethered but his spine is normal. We will see the NS next month so until then we are doing as much research as we can trying to prepare ourselves for the worst but still hoping for the best. Until then we are just enjoying everyday we have with him because at the end of the day him just being here with us is all that matters. > > > I think there are probably a lot of success stories. > > We just don't hear much about them here because the > > people who are here are usually here either because > > they are new to the disorder and need information or > > they aren't a success story and need support. We > > have > > many members who join, have surgery, then go off to > > live their lives happy and well. > > > > I was born with tethered cord and had no problems > > until I was 20. I didn't have surgery as a child, > > and > > maybe that would have helped me avoid problems > > forever. Maybe not. I think it's too early to > > really > > know how long surgery on infants for this will help. > > > > The surgical techniques of today are much better > > than > > those of 35 years ago, but also, there just aren't > > many people my age (38) who had surgery on their > > tethered cord as a very young child. > > > > The other thing about success, it all depends on how > > you measure it. And how long you expect it to last. > > I > > consider myself to be pretty lucky. I have pain, > > but > > I still can live a very full and normal life. I > > much > > prefer what I have to what some people around me > > have. > > I'll take my limp and bladder issues over someone's > > tremors from Parkinsons any day. Of course, someone > > with Parkinsons might say the same of my limp and > > bladder issues - they'd prefer their tremors. > > > > It's all relative, and people who don't have any > > physical issues measure success very differently, I > > think, than those of us who do have those issues. I > > also think that people with " normal " children (like > > me) might not remember that it could change at any > > moment. I have a severely disabled nephew who was > > born perfectly healthy and normal. One night, a > > high > > fever, a seizure, and his life changed forever. I > > think I enjoy what I have so much because I know > > that > > tethered cord or not, what I have might just be > > taken > > away or replaced with something much less (or more) > > pleasant. I don't dwell on it. Just because my > > neighbor at work is healthy today doesn't mean he > > will > > be tomorrow either and I don't see him dwelling on > > it. > > Does that make any sense? > > > > I hope there are a few parents on here whose > > children > > had surgery long enough ago to set your mind at ease > > a > > bit. As parents, we make the best choices we can, > > and > > then we have to watch as our children thrive anyway. > > > > It's amazing how resilient those little buggers are! > > > > > > > > > > > > > > > > > > I am in the same situation with my son. He was > > > born on 08/24/2006 > > > with > > > > tethered spinal cord and it was only found > > because > > > he was also born > > > > with an imperforated anus. He shows no signs of > > > having the tc but we > > > > will the NS on 11/30 to find out more and to > > > discuss surgery. I > > > would > > > > also like to know if their are any sucess > > stories > > > out there if this > > > is > > > > found early. > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Tommi, I really don't mean to be philosophizing, or whatever that word is. It's just the truth. I try to tell my mom these things. I have the most wonderful mother in the world, but her guilt over my issues makes me feel bad about not being born more perfect, so she doesn't have to feel bad about it. I just point out to her how great my life is, and it really, really is. I live a charmed life. Most of my imperfections are pretty slight compared to what they could be, and my physical issues don't impact my life nearly the way some mental illnesses could. My family has some bipolar issues in it, and let me just be the first to say, I will take my spinal cord issues ANY DAY! I'm glad that it helps, whatever it is. I don't want any other moms feeling guilty for what they couldn't and can't control. --- tommi wrote: > , > You are becoming quit the philosopher!! Very well > put! > Once again, thanks for the encouraging words..... > You could start your own website... > 'sencouragement.com > > Thank you, Thank you!! Just what I needed right now, > it made me cancel my pitty party!!(So you all are > uninvited)! > Tommi > > --- Weaver wrote: > > > I think there are probably a lot of success > stories. > > We just don't hear much about them here because > the > > people who are here are usually here either > because > > they are new to the disorder and need information > or > > they aren't a success story and need support. We > > have > > many members who join, have surgery, then go off > to > > live their lives happy and well. > > > > I was born with tethered cord and had no problems > > until I was 20. I didn't have surgery as a child, > > and > > maybe that would have helped me avoid problems > > forever. Maybe not. I think it's too early to > > really > > know how long surgery on infants for this will > help. > > > > The surgical techniques of today are much better > > than > > those of 35 years ago, but also, there just aren't > > many people my age (38) who had surgery on their > > tethered cord as a very young child. > > > > The other thing about success, it all depends on > how > > you measure it. And how long you expect it to > last. > > I > > consider myself to be pretty lucky. I have pain, > > but > > I still can live a very full and normal life. I > > much > > prefer what I have to what some people around me > > have. > > I'll take my limp and bladder issues over > someone's > > tremors from Parkinsons any day. Of course, > someone > > with Parkinsons might say the same of my limp and > > bladder issues - they'd prefer their tremors. > > > > It's all relative, and people who don't have any > > physical issues measure success very differently, > I > > think, than those of us who do have those issues. > I > > also think that people with " normal " children > (like > > me) might not remember that it could change at any > > moment. I have a severely disabled nephew who was > > born perfectly healthy and normal. One night, a > > high > > fever, a seizure, and his life changed forever. I > > think I enjoy what I have so much because I know > > that > > tethered cord or not, what I have might just be > > taken > > away or replaced with something much less (or > more) > > pleasant. I don't dwell on it. Just because my > > neighbor at work is healthy today doesn't mean he > > will > > be tomorrow either and I don't see him dwelling on > > it. > > Does that make any sense? > > > > I hope there are a few parents on here whose > > children > > had surgery long enough ago to set your mind at > ease > > a > > bit. As parents, we make the best choices we can, > > and > > then we have to watch as our children thrive > anyway. > > > > It's amazing how resilient those little buggers > are! > > > > > > > > > > > > > > > > > > I am in the same situation with my son. He was > > > born on 08/24/2006 > > > with > > > > tethered spinal cord and it was only found > > because > > > he was also born > > > > with an imperforated anus. He shows no signs > of > > > having the tc but we > > > > will the NS on 11/30 to find out more and to > > > discuss surgery. I > > > would > > > > also like to know if their are any sucess > > stories > > > out there if this > > > is > > > > found early. > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 I'm so sorry about your daughter. That is really a tough thing, and I'm sure just getting to your son's day of birth brought such relief. I honestly can't imagine losing a child. Your son is still just a wee one, isn't he? My youngest is three. I look at him every day in amazement. He was a " surprise " baby - our older children were 18, 12, and 11 when he was born. We didn't know we wanted another baby, then he happened. Babies are amazing critters. I hope you get good news from the nsg, especially considering his spine is normal. Don't feel a need to rush to surgery. Make sure you are completely comfortable with the neurosurgeon and get a second opinion (and even a third) if you aren't. Unless there are symptoms or progression of symptoms, there isn't an immediate rush. If there are symptoms, sooner is better than later, but the neurosurgeons I saw said even waiting a couple of weeks won't make a big difference. Just make sure you feel like the doctor is the best you can have and then trust your choice. --- judithallisoncupples wrote: > - Thank you for the post, you are so right > in saying that > you never know what will happen. We lost our first > child a little > girl who came into the world to soon so my second > pregnancy was high > risk the entire way with me being put into the > hospital at 19 weeks > then bed rest from there out. Once we made it to the > day of > inducement we thought nothing else could go wrong > until my son > Garren was born and they rushed the NIC doctors into > the room when > they discovered his imperforated anus. Next thing we > know he and my > husband are being rushed to a nearby children's > hospital to be seen > by surgeons. Long story short he had surgery the > next day for the > imperforated anus and made it through like a champ > but they > continued to run test ultrasounds cat scans MRI > looking for things > normally found with the imperforated anus and that > is when they > found the tethered cord. The only thing we have been > told so far is > that his spinal cord is tethered but his spine is > normal. We will > see the NS next month so until then we are doing as > much research as > we can trying to prepare ourselves for the worst but > still hoping > for the best. Until then we are just enjoying > everyday we have with > him because at the end of the day him just being > here with us is all > that matters. > > > > > > > > I think there are probably a lot of success > stories. > > > We just don't hear much about them here because > the > > > people who are here are usually here either > because > > > they are new to the disorder and need > information or > > > they aren't a success story and need support. > We > > > have > > > many members who join, have surgery, then go off > to > > > live their lives happy and well. > > > > > > I was born with tethered cord and had no > problems > > > until I was 20. I didn't have surgery as a > child, > > > and > > > maybe that would have helped me avoid problems > > > forever. Maybe not. I think it's too early to > > > really > > > know how long surgery on infants for this will > help. > > > > > > The surgical techniques of today are much better > > > than > > > those of 35 years ago, but also, there just > aren't > > > many people my age (38) who had surgery on their > > > tethered cord as a very young child. > > > > > > The other thing about success, it all depends on > how > > > you measure it. And how long you expect it to > last. > > > I > > > consider myself to be pretty lucky. I have > pain, > > > but > > > I still can live a very full and normal life. I > > > much > > > prefer what I have to what some people around me > > > have. > > > I'll take my limp and bladder issues over > someone's > > > tremors from Parkinsons any day. Of course, > someone > > > with Parkinsons might say the same of my limp > and > > > bladder issues - they'd prefer their tremors. > > > > > > It's all relative, and people who don't have any > > > physical issues measure success very > differently, I > > > think, than those of us who do have those > issues. I > > > also think that people with " normal " children > (like > > > me) might not remember that it could change at > any > > > moment. I have a severely disabled nephew who > was > > > born perfectly healthy and normal. One night, a > > > high > > > fever, a seizure, and his life changed forever. > I > > > think I enjoy what I have so much because I know > > > that > > > tethered cord or not, what I have might just be > > > taken > > > away or replaced with something much less (or > more) > > > pleasant. I don't dwell on it. Just because my > > > neighbor at work is healthy today doesn't mean > he > > > will > > > be tomorrow either and I don't see him dwelling > on > > > it. > > > Does that make any sense? > > > > > > I hope there are a few parents on here whose > > > children > > > had surgery long enough ago to set your mind at > ease > > > a > > > bit. As parents, we make the best choices we > can, > > > and > > > then we have to watch as our children thrive > anyway. > > > > > > It's amazing how resilient those little buggers > are! > > > > > > > > > > > > > > > > > > > > > > > > > I am in the same situation with my son. He > was > > > > born on 08/24/2006 > > > > with > > > > > tethered spinal cord and it was only found > > > because > > > > he was also born > > > > > with an imperforated anus. He shows no signs > of > > > > having the tc but we > > > > > will the NS on 11/30 to find out more and to > > > > discuss surgery. I > > > > would > > > > > also like to know if their are any sucess > > > stories > > > > out there if this > > > > is > > > > > found early. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 What does that mean - that she does not have spina bifida but has a tether? I thought all congenital tethered cords were spinal bifida occulta. Abby. > > > > My girl was born September 11, 2006 and has been diagnosed with TSC > > (also spina bifida occulta) and I have been advised that she will > > require surgery. We are looking at surgery as early as January 2007. > > Currently I don't believe she has any symptoms but really don't know > > if she has bowel / bladder control. > > > > Just looking for some parental reassurance that this condition is > > manageable as we continue into the world of surgery and dealing with > > this condition as she grows. > > > > Thanks in advance for any information. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 , Your posts are so helpful in helping me deal with a tc child. It makes me think about what my child would want me to do rather than me just pitying myself and my situation. You post also makes me realize that here I am worrying about what could happen, when right now my daughter is doing so well. That could be taken away from me at any time and replaced by something more unpleasant. And here I am not enjoying the perfect moments I have with my daughter. I think that even if she were to develop issues, she would want a strong mom who does not consider it such a big deal. It is hard for me to understand because I have never had a surgery or issue in my life, and I cannot imagine my daughter having real issues that I cannot control or fix. But that's dwelling on the future and the past, which I dont have any control of, and not living or enjoying the present. Thanks for your posts.. Abby. > > I think there are probably a lot of success stories. > We just don't hear much about them here because the > people who are here are usually here either because > they are new to the disorder and need information or > they aren't a success story and need support. We have > many members who join, have surgery, then go off to > live their lives happy and well. > > I was born with tethered cord and had no problems > until I was 20. I didn't have surgery as a child, and > maybe that would have helped me avoid problems > forever. Maybe not. I think it's too early to really > know how long surgery on infants for this will help. > The surgical techniques of today are much better than > those of 35 years ago, but also, there just aren't > many people my age (38) who had surgery on their > tethered cord as a very young child. > > The other thing about success, it all depends on how > you measure it. And how long you expect it to last. I > consider myself to be pretty lucky. I have pain, but > I still can live a very full and normal life. I much > prefer what I have to what some people around me have. > I'll take my limp and bladder issues over someone's > tremors from Parkinsons any day. Of course, someone > with Parkinsons might say the same of my limp and > bladder issues - they'd prefer their tremors. > > It's all relative, and people who don't have any > physical issues measure success very differently, I > think, than those of us who do have those issues. I > also think that people with " normal " children (like > me) might not remember that it could change at any > moment. I have a severely disabled nephew who was > born perfectly healthy and normal. One night, a high > fever, a seizure, and his life changed forever. I > think I enjoy what I have so much because I know that > tethered cord or not, what I have might just be taken > away or replaced with something much less (or more) > pleasant. I don't dwell on it. Just because my > neighbor at work is healthy today doesn't mean he will > be tomorrow either and I don't see him dwelling on it. > Does that make any sense? > > I hope there are a few parents on here whose children > had surgery long enough ago to set your mind at ease a > bit. As parents, we make the best choices we can, and > then we have to watch as our children thrive anyway. > It's amazing how resilient those little buggers are! > > > > > > > > > > I am in the same situation with my son. He was > > born on 08/24/2006 > > with > > > tethered spinal cord and it was only found because > > he was also born > > > with an imperforated anus. He shows no signs of > > having the tc but we > > > will the NS on 11/30 to find out more and to > > discuss surgery. I > > would > > > also like to know if their are any sucess stories > > out there if this > > is > > > found early. > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 You are very welcome. I'm glad my musings (ramblings??) help. You know, we all worry about what bad might happen. Do any of us worry about the good that might happen? Sorry, I feel all weird these days. My mother in law has been in the hospital for a month. She went to the ER for a medication interaction and her congestive heart failure (which was well under control at home) has almost killed her twice since she went to the hospital. I think they should have just let her sleep off the interaction and she would have never had these episodes. Anyway, both times she almost died, her kids were so sure it was the end. But she pulled out of it and hopefully now that she's smart enough to tell her doctor to buzz off if he tries to give her something new, she will be going home. Boy, does dealing with an aging parent make things complicated! I think I always expected I would deal with my kids' stuff, but never gave caring for parents a second thought. It's made me think a lot about what we just assume will always be there. --- subub_98 wrote: > , > > Your posts are so helpful in helping me deal with a > tc child. It > makes me think about what my child would want me to > do rather than > me just pitying myself and my situation. You post > also makes me > realize that here I am worrying about what could > happen, when right > now my daughter is doing so well. That could be > taken away from me > at any time and replaced by something more > unpleasant. And here I am > not enjoying the perfect moments I have with my > daughter. > > I think that even if she were to develop issues, she > would want a > strong mom who does not consider it such a big deal. > It is hard for > me to understand because I have never had a surgery > or issue in my > life, and I cannot imagine my daughter having real > issues that I > cannot control or fix. But that's dwelling on the > future and the > past, which I dont have any control of, and not > living or enjoying > the present. > > Thanks for your posts.. > > Abby. > > > > > I think there are probably a lot of success > stories. > > We just don't hear much about them here because > the > > people who are here are usually here either > because > > they are new to the disorder and need information > or > > they aren't a success story and need support. We > have > > many members who join, have surgery, then go off > to > > live their lives happy and well. > > > > I was born with tethered cord and had no problems > > until I was 20. I didn't have surgery as a child, > and > > maybe that would have helped me avoid problems > > forever. Maybe not. I think it's too early to > really > > know how long surgery on infants for this will > help. > > The surgical techniques of today are much better > than > > those of 35 years ago, but also, there just aren't > > many people my age (38) who had surgery on their > > tethered cord as a very young child. > > > > The other thing about success, it all depends on > how > > you measure it. And how long you expect it to > last. I > > consider myself to be pretty lucky. I have pain, > but > > I still can live a very full and normal life. I > much > > prefer what I have to what some people around me > have. > > I'll take my limp and bladder issues over > someone's > > tremors from Parkinsons any day. Of course, > someone > > with Parkinsons might say the same of my limp and > > bladder issues - they'd prefer their tremors. > > > > It's all relative, and people who don't have any > > physical issues measure success very differently, > I > > think, than those of us who do have those issues. > I > > also think that people with " normal " children > (like > > me) might not remember that it could change at any > > moment. I have a severely disabled nephew who was > > born perfectly healthy and normal. One night, a > high > > fever, a seizure, and his life changed forever. I > > think I enjoy what I have so much because I know > that > > tethered cord or not, what I have might just be > taken > > away or replaced with something much less (or > more) > > pleasant. I don't dwell on it. Just because my > > neighbor at work is healthy today doesn't mean he > will > > be tomorrow either and I don't see him dwelling on > it. > > Does that make any sense? > > > > I hope there are a few parents on here whose > children > > had surgery long enough ago to set your mind at > ease a > > bit. As parents, we make the best choices we can, > and > > then we have to watch as our children thrive > anyway. > > It's amazing how resilient those little buggers > are! > > > > > > > > > > > > > > > > I am in the same situation with my son. He was > > > born on 08/24/2006 > > > with > > > > tethered spinal cord and it was only found > because > > > he was also born > > > > with an imperforated anus. He shows no signs > of > > > having the tc but we > > > > will the NS on 11/30 to find out more and to > > > discuss surgery. I > > > would > > > > also like to know if their are any sucess > stories > > > out there if this > > > is > > > > found early. > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Tommi, I say the same thing except I say God doesn't give his more than we can handle I just wish he didn't trust me so much! Rick & Abby- My son as has a tethered cord but no signs of SB, we would not have even known he had a tethered cord if it hadn't been for his imperforated anus. They said we were lucky to catch it early and no one has told me he has SB. > > > > > > > I think there are probably a lot of success > > > stories. > > > > We just don't hear much about them here because > > > the > > > > people who are here are usually here either > > > because > > > > they are new to the disorder and need > > information > > > or > > > > they aren't a success story and need support. > > We > > > > have > > > > many members who join, have surgery, then go off > > > to > > > > live their lives happy and well. > > > > > > > > I was born with tethered cord and had no > > problems > > > > until I was 20. I didn't have surgery as a > > child, > > > > and > > > > maybe that would have helped me avoid problems > > > > forever. Maybe not. I think it's too early to > > > > really > > > > know how long surgery on infants for this will > > > help. > > > > > > > > The surgical techniques of today are much better > > > > than > > > > those of 35 years ago, but also, there just > > aren't > > > > many people my age (38) who had surgery on their > > > > tethered cord as a very young child. > > > > > > > > The other thing about success, it all depends on > > > how > > > > you measure it. And how long you expect it to > > > last. > > > > I > > > > consider myself to be pretty lucky. I have > > pain, > > > > but > > > > I still can live a very full and normal life. I > > > > much > > > > prefer what I have to what some people around me > > > > have. > > > > I'll take my limp and bladder issues over > > > someone's > > > > tremors from Parkinsons any day. Of course, > > > someone > > > > with Parkinsons might say the same of my limp > > and > > > > bladder issues - they'd prefer their tremors. > > > > > > > > It's all relative, and people who don't have any > > > > physical issues measure success very > > differently, > > > I > > > > think, than those of us who do have those > > issues. > > > I > > > > also think that people with " normal " children > > > (like > > > > me) might not remember that it could change at > > any > > > > moment. I have a severely disabled nephew who > > was > > > > born perfectly healthy and normal. One night, a > > > > high > > > > fever, a seizure, and his life changed forever. > > I > > > > think I enjoy what I have so much because I know > > > > that > > > > tethered cord or not, what I have might just be > > > > taken > > > > away or replaced with something much less (or > > > more) > > > > pleasant. I don't dwell on it. Just because my > > > > neighbor at work is healthy today doesn't mean > > he > > > > will > > > > be tomorrow either and I don't see him dwelling > > on > > > > it. > > > > Does that make any sense? > > > > > > > > I hope there are a few parents on here whose > > > > children > > > > had surgery long enough ago to set your mind at > > > ease > > > > a > > > > bit. As parents, we make the best choices we > > can, > > > > and > > > > then we have to watch as our children thrive > > > anyway. > > > > > > > > It's amazing how resilient those little buggers > > > are! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I am in the same situation with my son. He > > was > > > > > born on 08/24/2006 > > > > > with > > > > > > tethered spinal cord and it was only found > > > > because > > > > > he was also born > > > > > > with an imperforated anus. He shows no signs > > > of > > > > > having the tc but we > > > > > > will the NS on 11/30 to find out more and to > > > > > discuss surgery. I > > > > > would > > > > > > also like to know if their are any sucess > > > > stories > > > > > out there if this > > > > > is > > > > > > found early. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 hmm..The terminology is so vague. My daughter has tethered cord, but intact dura and spine. Taking a x-ray showed nothing abnormal. There was one small fat pad in the back that prompted us to check further, but it wasnt connected to anything inside. So, it was just the tether, but our ns said that any abnormality with the spinal cord, including a tether is called sbo. I guess that's just words that different people use differently? Abby. > > > > > > > > > I think there are probably a lot of success > > > > stories. > > > > > We just don't hear much about them here because > > > > the > > > > > people who are here are usually here either > > > > because > > > > > they are new to the disorder and need > > > information > > > > or > > > > > they aren't a success story and need support. > > > We > > > > > have > > > > > many members who join, have surgery, then go off > > > > to > > > > > live their lives happy and well. > > > > > > > > > > I was born with tethered cord and had no > > > problems > > > > > until I was 20. I didn't have surgery as a > > > child, > > > > > and > > > > > maybe that would have helped me avoid problems > > > > > forever. Maybe not. I think it's too early to > > > > > really > > > > > know how long surgery on infants for this will > > > > help. > > > > > > > > > > The surgical techniques of today are much better > > > > > than > > > > > those of 35 years ago, but also, there just > > > aren't > > > > > many people my age (38) who had surgery on their > > > > > tethered cord as a very young child. > > > > > > > > > > The other thing about success, it all depends on > > > > how > > > > > you measure it. And how long you expect it to > > > > last. > > > > > I > > > > > consider myself to be pretty lucky. I have > > > pain, > > > > > but > > > > > I still can live a very full and normal life. I > > > > > much > > > > > prefer what I have to what some people around me > > > > > have. > > > > > I'll take my limp and bladder issues over > > > > someone's > > > > > tremors from Parkinsons any day. Of course, > > > > someone > > > > > with Parkinsons might say the same of my limp > > > and > > > > > bladder issues - they'd prefer their tremors. > > > > > > > > > > It's all relative, and people who don't have any > > > > > physical issues measure success very > > > differently, > > > > I > > > > > think, than those of us who do have those > > > issues. > > > > I > > > > > also think that people with " normal " children > > > > (like > > > > > me) might not remember that it could change at > > > any > > > > > moment. I have a severely disabled nephew who > > > was > > > > > born perfectly healthy and normal. One night, a > > > > > high > > > > > fever, a seizure, and his life changed forever. > > > I > > > > > think I enjoy what I have so much because I know > > > > > that > > > > > tethered cord or not, what I have might just be > > > > > taken > > > > > away or replaced with something much less (or > > > > more) > > > > > pleasant. I don't dwell on it. Just because my > > > > > neighbor at work is healthy today doesn't mean > > > he > > > > > will > > > > > be tomorrow either and I don't see him dwelling > > > on > > > > > it. > > > > > Does that make any sense? > > > > > > > > > > I hope there are a few parents on here whose > > > > > children > > > > > had surgery long enough ago to set your mind at > > > > ease > > > > > a > > > > > bit. As parents, we make the best choices we > > > can, > > > > > and > > > > > then we have to watch as our children thrive > > > > anyway. > > > > > > > > > > It's amazing how resilient those little buggers > > > > are! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I am in the same situation with my son. He > > > was > > > > > > born on 08/24/2006 > > > > > > with > > > > > > > tethered spinal cord and it was only found > > > > > because > > > > > > he was also born > > > > > > > with an imperforated anus. He shows no signs > > > > of > > > > > > having the tc but we > > > > > > > will the NS on 11/30 to find out more and to > > > > > > discuss surgery. I > > > > > > would > > > > > > > also like to know if their are any sucess > > > > > stories > > > > > > out there if this > > > > > > is > > > > > > > found early. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 SBO is not just tethered cord. For a dx of SBO, there has to be a defect in the bones of the spinal column. http://www.spineuniverse.com/displayarticle.php/article234.html A cord can be tethered without any type of SB present. I don't think this terminology is vague. --- subub_98 wrote: > hmm..The terminology is so vague. My daughter has > tethered cord, but > intact dura and spine. Taking a x-ray showed nothing > abnormal. There > was one small fat pad in the back that prompted us > to check further, > but it wasnt connected to anything inside. So, it > was just the tether, > but our ns said that any abnormality with the spinal > cord, including a > tether is called sbo. I guess that's just words that > different people > use differently? > > Abby. > > > > > > > > > > > > > I think there are probably a lot of > success > > > > > stories. > > > > > > We just don't hear much about them here > because > > > > > the > > > > > > people who are here are usually here > either > > > > > because > > > > > > they are new to the disorder and need > > > > information > > > > > or > > > > > > they aren't a success story and need > support. > > > > We > > > > > > have > > > > > > many members who join, have surgery, then > go off > > > > > to > > > > > > live their lives happy and well. > > > > > > > > > > > > I was born with tethered cord and had no > > > > problems > > > > > > until I was 20. I didn't have surgery as a > > > > child, > > > > > > and > > > > > > maybe that would have helped me avoid > problems > > > > > > forever. Maybe not. I think it's too > early to > > > > > > really > > > > > > know how long surgery on infants for this > will > > > > > help. > > > > > > > > > > > > The surgical techniques of today are much > better > > > > > > than > > > > > > those of 35 years ago, but also, there > just > > > > aren't > > > > > > many people my age (38) who had surgery on > their > > > > > > tethered cord as a very young child. > > > > > > > > > > > > The other thing about success, it all > depends on > > > > > how > > > > > > you measure it. And how long you expect > it to > > > > > last. > > > > > > I > > > > > > consider myself to be pretty lucky. I > have > > > > pain, > > > > > > but > > > > > > I still can live a very full and normal > life. I > > > > > > much > > > > > > prefer what I have to what some people > around me > > > > > > have. > > > > > > I'll take my limp and bladder issues over > > > > > someone's > > > > > > tremors from Parkinsons any day. Of > course, > > > > > someone > > > > > > with Parkinsons might say the same of my > limp > > > > and > > > > > > bladder issues - they'd prefer their > tremors. > > > > > > > > > > > > It's all relative, and people who don't > have any > > > > > > physical issues measure success very > > > > differently, > > > > > I > > > > > > think, than those of us who do have those > > > > issues. > > > > > I > > > > > > also think that people with " normal " > children > > > > > (like > > > > > > me) might not remember that it could > change at > > > > any > > > > > > moment. I have a severely disabled nephew > who > > > > was > > > > > > born perfectly healthy and normal. One > night, a > > > > > > high > > > > > > fever, a seizure, and his life changed > forever. > > > > I > > > > > > think I enjoy what I have so much because > I know > > > > > > that > > > > > > tethered cord or not, what I have might > just be > > > > > > taken > > > > > > away or replaced with something much less > (or > > > > > more) > > > > > > pleasant. I don't dwell on it. Just > because my > > > > > > neighbor at work is healthy today doesn't > mean > > > > he > > > > > > will > > > > > > be tomorrow either and I don't see him > dwelling > > > > on > > > > > > it. > > > > > > Does that make any sense? > > > > > > > > > > > > I hope there are a few parents on here > whose > > > > > > children > > > > > > had surgery long enough ago to set your > mind at > > > > > ease > > > > > > a > > > > > > bit. As parents, we make the best choices > we > > > > can, > > > > > > and > > > > > > then we have to watch as our children > thrive > > > > > anyway. > > > > > > > > > > > > It's amazing how resilient those little > buggers > > > > > are! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I am in the same situation with my > son. He > > > > was > > > > > > > born on 08/24/2006 > > > > > > > with > > > > > > > > tethered spinal cord and it was only > found > > > > > > because > > > > > > > he was also born > > > > > > > > with an imperforated anus. He shows no > signs > > > > > of > > > > > > > having the tc but we > > > > > > > > will the NS on 11/30 to find out more > and to > > > > > > > discuss surgery. I > > > > > > > would > > > > > > > > also like to know if their are any > sucess > > > > > > stories > > > > > > > out there if this > > > > > > > is > > > > > > > > found early. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 So my daughter does not have spina bifida occulta then.. the nuerosurgeon specifically told me that she had sbo, and she has no bone or dura abnormality. Abby. > > > > > > > > > > > > > I think there are probably a lot of > > success > > > > > > stories. > > > > > > > We just don't hear much about them here > > because > > > > > > the > > > > > > > people who are here are usually here > > either > > > > > > because > > > > > > > they are new to the disorder and need > > > > > information > > > > > > or > > > > > > > they aren't a success story and need > > support. > > > > > We > > > > > > > have > > > > > > > many members who join, have surgery, then > > go off > > > > > > to > > > > > > > live their lives happy and well. > > > > > > > > > > > > > > I was born with tethered cord and had no > > > > > problems > > > > > > > until I was 20. I didn't have surgery as a > > > > > child, > > > > > > > and > > > > > > > maybe that would have helped me avoid > > problems > > > > > > > forever. Maybe not. I think it's too > > early to > > > > > > > really > > > > > > > know how long surgery on infants for this > > will > > > > > > help. > > > > > > > > > > > > > > The surgical techniques of today are much > > better > > > > > > > than > > > > > > > those of 35 years ago, but also, there > > just > > > > > aren't > > > > > > > many people my age (38) who had surgery on > > their > > > > > > > tethered cord as a very young child. > > > > > > > > > > > > > > The other thing about success, it all > > depends on > > > > > > how > > > > > > > you measure it. And how long you expect > > it to > > > > > > last. > > > > > > > I > > > > > > > consider myself to be pretty lucky. I > > have > > > > > pain, > > > > > > > but > > > > > > > I still can live a very full and normal > > life. I > > > > > > > much > > > > > > > prefer what I have to what some people > > around me > > > > > > > have. > > > > > > > I'll take my limp and bladder issues over > > > > > > someone's > > > > > > > tremors from Parkinsons any day. Of > > course, > > > > > > someone > > > > > > > with Parkinsons might say the same of my > > limp > > > > > and > > > > > > > bladder issues - they'd prefer their > > tremors. > > > > > > > > > > > > > > It's all relative, and people who don't > > have any > > > > > > > physical issues measure success very > > > > > differently, > > > > > > I > > > > > > > think, than those of us who do have those > > > > > issues. > > > > > > I > > > > > > > also think that people with " normal " > > children > > > > > > (like > > > > > > > me) might not remember that it could > > change at > > > > > any > > > > > > > moment. I have a severely disabled nephew > > who > > > > > was > > > > > > > born perfectly healthy and normal. One > > night, a > > > > > > > high > > > > > > > fever, a seizure, and his life changed > > forever. > > > > > I > > > > > > > think I enjoy what I have so much because > > I know > > > > > > > that > > > > > > > tethered cord or not, what I have might > > just be > > > > > > > taken > > > > > > > away or replaced with something much less > > (or > > > > > > more) > > > > > > > pleasant. I don't dwell on it. Just > > because my > > > > > > > neighbor at work is healthy today doesn't > > mean > > > > > he > > > > > > > will > > > > > > > be tomorrow either and I don't see him > > dwelling > > > > > on > > > > > > > it. > > > > > > > Does that make any sense? > > > > > > > > > > > > > > I hope there are a few parents on here > > whose > > > > > > > children > > > > > > > had surgery long enough ago to set your > > mind at > > > > > > ease > > > > > > > a > > > > > > > bit. As parents, we make the best choices > > we > > > > > can, > > > > > > > and > > > > > > > then we have to watch as our children > > thrive > > > > > > anyway. > > > > > > > > > > > > > > It's amazing how resilient those little > > buggers > > > > > > are! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I am in the same situation with my > > son. He > > > > > was > > > > > > > > born on 08/24/2006 > > > > > > > > with > > > > > > > > > tethered spinal cord and it was only > > found > > > > > > > because > > > > > > > > he was also born > > > > > > > > > with an imperforated anus. He shows no > > signs > > > > > > of > > > > > > > > having the tc but we > > > > > > > > > will the NS on 11/30 to find out more > > and to > > > > > > > > discuss surgery. I > > > > > > > > would > > > > > > > > > also like to know if their are any > > sucess > > > > > > > stories > > > > > > > > out there if this > > > > > > > > is > > > > > > > > > found early. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 I would ask him. From all the research I've done, doctors I've talked to, SBO is a hole in the spinal bones, where they didn't grow together properly. If there are sites out there that have conflicting information, I would love to have them. I'll take them to my doctor and ask for clarification. --- subub_98 wrote: > So my daughter does not have spina bifida occulta > then.. the > nuerosurgeon specifically told me that she had sbo, > and she has no > bone or dura abnormality. > > Abby. > > > > > > > > > > > > > > > > > I think there are probably a lot of > > > success > > > > > > > stories. > > > > > > > > We just don't hear much about them > here > > > because > > > > > > > the > > > > > > > > people who are here are usually here > > > either > > > > > > > because > > > > > > > > they are new to the disorder and need > > > > > > information > > > > > > > or > > > > > > > > they aren't a success story and need > > > support. > > > > > > We > > > > > > > > have > > > > > > > > many members who join, have surgery, > then > > > go off > > > > > > > to > > > > > > > > live their lives happy and well. > > > > > > > > > > > > > > > > I was born with tethered cord and had > no > > > > > > problems > > > > > > > > until I was 20. I didn't have surgery > as a > > > > > > child, > > > > > > > > and > > > > > > > > maybe that would have helped me avoid > > > problems > > > > > > > > forever. Maybe not. I think it's too > > > early to > > > > > > > > really > > > > > > > > know how long surgery on infants for > this > > > will > > > > > > > help. > > > > > > > > > > > > > > > > The surgical techniques of today are > much > > > better > > > > > > > > than > > > > > > > > those of 35 years ago, but also, there > > > just > > > > > > aren't > > > > > > > > many people my age (38) who had > surgery on > > > their > > > > > > > > tethered cord as a very young child. > > > > > > > > > > > > > > > > The other thing about success, it all > > > depends on > > > > > > > how > > > > > > > > you measure it. And how long you > expect > > > it to > > > > > > > last. > > > > > > > > I > > > > > > > > consider myself to be pretty lucky. I > > > have > > > > > > pain, > > > > > > > > but > > > > > > > > I still can live a very full and > normal > > > life. I > > > > > > > > much > > > > > > > > prefer what I have to what some people > > > around me > > > > > > > > have. > > > > > > > > I'll take my limp and bladder issues > over > > > > > > > someone's > > > > > > > > tremors from Parkinsons any day. Of > > > course, > > > > > > > someone > > > > > > > > with Parkinsons might say the same of > my > > > limp > > > > > > and > > > > > > > > bladder issues - they'd prefer their > > > tremors. > > > > > > > > > > > > > > > > It's all relative, and people who > don't > > > have any > > > > > > > > physical issues measure success very > > > > > > differently, > > > > > > > I > > > > > > > > think, than those of us who do have > those > > > > > > issues. > > > > > > > I > > > > > > > > also think that people with " normal " > > > children > > > > > > > (like > > > > > > > > me) might not remember that it could > > > change at > > > > > > any > > > > > > > > moment. I have a severely disabled > nephew > > > who > > > > > > was > > > > > > > > born perfectly healthy and normal. > One > > > night, a > > > > > > > > high > > > > > > > > fever, a seizure, and his life changed > > > forever. > > > > > > I > > > > > > > > think I enjoy what I have so much > because > > > I know > > > > > > > > that > > > > > > > > tethered cord or not, what I have > might > > > just be > > > > > > > > taken > > > > > > > > away or replaced with something much > less > > > (or > > > > > > > more) > > > > > > > > pleasant. I don't dwell on it. Just > > > because my > > > > > > > > neighbor at work is healthy today > doesn't > > > mean > > > > > > he > > > > > > > > will > > > > > > > > be tomorrow either and I don't see him > > > dwelling > > > > > > on > > > > > > > > it. > > > > > > > > Does that make any sense? > > > > > > > > > > > > > > > > I hope there are a few parents on here > > > whose > > > > > > > > children > > > > > > > > had surgery long enough ago to set > your > > > mind at > > > > > > > ease > > > > > > > > a > > > > > > > > bit. As parents, we make the best > choices > > > we > > > > > > can, > > > > > > > > and > > > > > > > > then we have to watch as our children > > > thrive > > > > > > > anyway. > > > > > > > > > > > > > > > > It's amazing how resilient those > little > > > buggers > > > > > > > are! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I am in the same situation with my > > > son. He > > > > > > was > > > > > > > > > born on 08/24/2006 > > > > > > > > > with > > > > > > > > > > tethered spinal cord and it was > only > > > found > > > > > > > > because > > > > > > > > > he was also born > > > > > > > > > > with an imperforated anus. He > shows no > > > signs > > > > > > > of > > > > > > > > > having the tc but we > > > > > > > > > > will the NS on 11/30 to find out > more > > > and to > > > > > > > > > discuss surgery. I > > > > > > > > > would > > > > > > > > > > also like to know if their are any > > > sucess > > > > > > > > stories > > > > > > > > > out there if this > > > > > > > > > is > > > > > > > > > > found early. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 This is the definition I found maybe it will help Spina Bifida means cleft spine, which is an incomplete closure in the spinal column. In general, the three types of spina bifida (from mild to severe) are: 1. Spina Bifida Occulta: There is an opening in one or more of the vertebrae (bones) of the spinal column without apparent damage to the spinal cord. 2. Meningocele: The meninges, or protective covering around the spinal cord, has pushed out through the opening in the vertebrae in a sac called the " meningocele. " However, the spinal cord remains intact. This form can be repaired with little or no damage to the nerve pathways. 3. Myelomeningocele: This is the most severe form of spina bifida, in which a portion of the spinal cord itself protrudes through the back. In some cases, sacs are covered with skin; in others, tissue and nerves are exposed. Generally, people use the terms " spina bifida " and " myelomeningocele " interchangeably. > > > > > > > > > > > > > > > I think there are probably a lot of > > > success > > > > > > > stories. > > > > > > > > We just don't hear much about them here > > > because > > > > > > > the > > > > > > > > people who are here are usually here > > > either > > > > > > > because > > > > > > > > they are new to the disorder and need > > > > > > information > > > > > > > or > > > > > > > > they aren't a success story and need > > > support. > > > > > > We > > > > > > > > have > > > > > > > > many members who join, have surgery, then > > > go off > > > > > > > to > > > > > > > > live their lives happy and well. > > > > > > > > > > > > > > > > I was born with tethered cord and had no > > > > > > problems > > > > > > > > until I was 20. I didn't have surgery as a > > > > > > child, > > > > > > > > and > > > > > > > > maybe that would have helped me avoid > > > problems > > > > > > > > forever. Maybe not. I think it's too > > > early to > > > > > > > > really > > > > > > > > know how long surgery on infants for this > > > will > > > > > > > help. > > > > > > > > > > > > > > > > The surgical techniques of today are much > > > better > > > > > > > > than > > > > > > > > those of 35 years ago, but also, there > > > just > > > > > > aren't > > > > > > > > many people my age (38) who had surgery on > > > their > > > > > > > > tethered cord as a very young child. > > > > > > > > > > > > > > > > The other thing about success, it all > > > depends on > > > > > > > how > > > > > > > > you measure it. And how long you expect > > > it to > > > > > > > last. > > > > > > > > I > > > > > > > > consider myself to be pretty lucky. I > > > have > > > > > > pain, > > > > > > > > but > > > > > > > > I still can live a very full and normal > > > life. I > > > > > > > > much > > > > > > > > prefer what I have to what some people > > > around me > > > > > > > > have. > > > > > > > > I'll take my limp and bladder issues over > > > > > > > someone's > > > > > > > > tremors from Parkinsons any day. Of > > > course, > > > > > > > someone > > > > > > > > with Parkinsons might say the same of my > > > limp > > > > > > and > > > > > > > > bladder issues - they'd prefer their > > > tremors. > > > > > > > > > > > > > > > > It's all relative, and people who don't > > > have any > > > > > > > > physical issues measure success very > > > > > > differently, > > > > > > > I > > > > > > > > think, than those of us who do have those > > > > > > issues. > > > > > > > I > > > > > > > > also think that people with " normal " > > > children > > > > > > > (like > > > > > > > > me) might not remember that it could > > > change at > > > > > > any > > > > > > > > moment. I have a severely disabled nephew > > > who > > > > > > was > > > > > > > > born perfectly healthy and normal. One > > > night, a > > > > > > > > high > > > > > > > > fever, a seizure, and his life changed > > > forever. > > > > > > I > > > > > > > > think I enjoy what I have so much because > > > I know > > > > > > > > that > > > > > > > > tethered cord or not, what I have might > > > just be > > > > > > > > taken > > > > > > > > away or replaced with something much less > > > (or > > > > > > > more) > > > > > > > > pleasant. I don't dwell on it. Just > > > because my > > > > > > > > neighbor at work is healthy today doesn't > > > mean > > > > > > he > > > > > > > > will > > > > > > > > be tomorrow either and I don't see him > > > dwelling > > > > > > on > > > > > > > > it. > > > > > > > > Does that make any sense? > > > > > > > > > > > > > > > > I hope there are a few parents on here > > > whose > > > > > > > > children > > > > > > > > had surgery long enough ago to set your > > > mind at > > > > > > > ease > > > > > > > > a > > > > > > > > bit. As parents, we make the best choices > > > we > > > > > > can, > > > > > > > > and > > > > > > > > then we have to watch as our children > > > thrive > > > > > > > anyway. > > > > > > > > > > > > > > > > It's amazing how resilient those little > > > buggers > > > > > > > are! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I am in the same situation with my > > > son. He > > > > > > was > > > > > > > > > born on 08/24/2006 > > > > > > > > > with > > > > > > > > > > tethered spinal cord and it was only > > > found > > > > > > > > because > > > > > > > > > he was also born > > > > > > > > > > with an imperforated anus. He shows no > > > signs > > > > > > > of > > > > > > > > > having the tc but we > > > > > > > > > > will the NS on 11/30 to find out more > > > and to > > > > > > > > > discuss surgery. I > > > > > > > > > would > > > > > > > > > > also like to know if their are any > > > sucess > > > > > > > > stories > > > > > > > > > out there if this > > > > > > > > > is > > > > > > > > > > found early. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Amen to that one.....Somedays, my plate feels plenty full.... I sometimes feel willing to share the wealth HA HA Tommi --- judithallisoncupples wrote: > Tommi, I say the same thing except I say God doesn't > give his more > than we can handle I just wish he didn't trust me so > much! > > Rick & Abby- My son as has a tethered cord but no > signs of SB, we > would not have even known he had a tethered cord if > it hadn't been > for his imperforated anus. They said we were lucky > to catch it early > and no one has told me he has SB. > > > > > > > > > > I think there are probably a lot of success > > > > stories. > > > > > We just don't hear much about them here > because > > > > the > > > > > people who are here are usually here either > > > > because > > > > > they are new to the disorder and need > > > information > > > > or > > > > > they aren't a success story and need > support. > > > We > > > > > have > > > > > many members who join, have surgery, then go > off > > > > to > > > > > live their lives happy and well. > > > > > > > > > > I was born with tethered cord and had no > > > problems > > > > > until I was 20. I didn't have surgery as a > > > child, > > > > > and > > > > > maybe that would have helped me avoid > problems > > > > > forever. Maybe not. I think it's too early > to > > > > > really > > > > > know how long surgery on infants for this > will > > > > help. > > > > > > > > > > The surgical techniques of today are much > better > > > > > than > > > > > those of 35 years ago, but also, there just > > > aren't > > > > > many people my age (38) who had surgery on > their > > > > > tethered cord as a very young child. > > > > > > > > > > The other thing about success, it all > depends on > > > > how > > > > > you measure it. And how long you expect it > to > > > > last. > > > > > I > > > > > consider myself to be pretty lucky. I have > > > pain, > > > > > but > > > > > I still can live a very full and normal > life. I > > > > > much > > > > > prefer what I have to what some people > around me > > > > > have. > > > > > I'll take my limp and bladder issues over > > > > someone's > > > > > tremors from Parkinsons any day. Of course, > > > > someone > > > > > with Parkinsons might say the same of my > limp > > > and > > > > > bladder issues - they'd prefer their > tremors. > > > > > > > > > > It's all relative, and people who don't have > any > > > > > physical issues measure success very > > > differently, > > > > I > > > > > think, than those of us who do have those > > > issues. > > > > I > > > > > also think that people with " normal " > children > > > > (like > > > > > me) might not remember that it could change > at > > > any > > > > > moment. I have a severely disabled nephew > who > > > was > > > > > born perfectly healthy and normal. One > night, a > > > > > high > > > > > fever, a seizure, and his life changed > forever. > > > I > > > > > think I enjoy what I have so much because I > know > > > > > that > > > > > tethered cord or not, what I have might just > be > > > > > taken > > > > > away or replaced with something much less > (or > > > > more) > > > > > pleasant. I don't dwell on it. Just because > my > > > > > neighbor at work is healthy today doesn't > mean > > > he > > > > > will > > > > > be tomorrow either and I don't see him > dwelling > > > on > > > > > it. > > > > > Does that make any sense? > === message truncated === Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Weaver said the following on 10/25/2006 9:13 AM: > SBO is not just tethered cord. For a dx of SBO, there > has to be a defect in the bones of the spinal column. > > http://www.spineuniverse.com/displayarticle.php/article234.html > Good article, thanks . " Spina bifida is a defined as any abnormal development of the _bones of the spine_ that display a typical pattern, with or without the involvement of the brain, nerves or covering of the nerves (meninges). It is the most common congenital spine abnormality. The term spina bifida covers a range of malformations that always include _deformities of certain parts of the vertebrae_, the spinous process and vertebral arch. Some have described this process as a_ failure of these bones to fuse _during early fetal development. " I definitely do not have any type of SB. All of my vertebrae are structurally sound. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2006 Report Share Posted October 30, 2006 Hi, Although it is only early days for us as my daughter had detethering at the end of July I would have to say that at this point in time i would consider her a success story. I am unsure what the future holds for her as far as retethering etc but for now she has gone from a little 3 year old who would cry most of the night with pain to a little girl who wakes occasionally for the simple reasons that toddlers do. By the time of her surgery the weakness in her legs had begun to prevent her from being able to walk uphill, down steps and she was actually back in her pram most of the time as her legs were just not coping. She is now much more mobile than she was even though she is still recovering from the surgery. I am happy that her deterioration has been halted -hopefully for a long time. Who knows!! She still certainly has issues relating to her tc- a real battle with constipation and still seems to get weak in the legs when she overdoes it but she is presently in a much better state than she was before. I know that her story is quite different to your sons as you mentioned he does not present any symptoms and he is alot younger than Ella. But, I always think it is nice to hear a happy story. It is such an anxious time for us as parents. Please contact me if you need anything. Regards, Lani - PS Sorry it has taken so long to get to you, but i am having trouble getting my posts through lately. Send instant messages to your online friends http://au.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
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