Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Hi , You are right to be concerned about a nsg that wants to intervene because of hyper reflexes alone. Not that this doesn't mean he won't eventually need an untethering, but it seems to be a giant leap to go from hyper reflexes as only symptom to untethering. I would highly recommend a second opinion from a nsg that is very versed (and a pediatric nsg) with untetherings. I'm sure you've read that sexual dysfunction can occur with males (and females, although we all know that we have parts that the medical world do not consider non-operating just because of lack of sensation). Between that and possible bladder/bowel problems, I would also highly recommend seeing a neuro-urologist for a baseline exam. This should also help you make a fully informed decision regarding surgery. As has been said often on our list and is true - outcomes depend on so many variables and some we aren't even aware of. People live with this condition for their entire lives and never know it. Sometimes it's found during an autopsy without anyone knowing a person had a tethered cord. Do you know what type of tether? I know others will write with good advice also, but if you start with a second opinion and a uro appt., you'll at least have started making headway. Kathy Intro and question I have limited time so will simply post an intro and ask for replies, please guide me if you need more info or there is anything I can clarify and I will try. I have a 15 year old son diagnosed with Scheuermann's kyphosis in February based on an Xray. This spine specialist then tested his reflexes. These were abnormally fast. We were referred for an MRI. This doctor then called us and said my son has TCS and he referred us to a pediatric neurosurgeon for an appointment this Wednesday. He said, and my son's chiropractor confirmed his opinion, that my son would need TCS release surgery, to prevent neurological problems. However, my basic questions are these. 1) As far as we can tell my son has no other symptoms besides the fast reflexes at this time. He doesn't have the dimple on the back, no muscle weakness that we know of (unless in some way the deformity of the vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. 2) He is 15, he is not a small child with symptoms, nor is he an adult yet, so that is puzzling me as to whether or not he should have surgery. My understanding from what I've read online is that children should always have it, and that adults shouldn't unless they have severe enough symptoms. I am not one to rush into surgery. The risks concern me. 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if symptoms start developing as he continues to grow we would still have time to do the surgery. I understand that once symptoms are severe that the surgery is less likely to help. 4) What is the risk of retethering after one surgery has been done? seems like it's relatively high due to the scar tissue. He doesn't have any now, why add some? 5) Can anyone direct me to studies that address the question of if surgery is *necessary* when there are no current symptoms? So.... thank you for reading this email, and please respond if you have any specific advice for me. Thank you, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Kathy, thank you, and bless you for writing right back. The doc who said do surgery was a spine specialist. He has sent us to a pediatric neurosurgeon for his opinion. My understanding is the nsg (is that the correct abbrev?) is also a doc who could do the untethering. So we actually don't have that opinion yet. I believe the doc to whom we've been referred does specialize in untetherings but again don't know that yet. The neuro-urologist baseline exam -- would seeing this person and the testing he/she would do show us if there was a problem *going* to happen, that we just didn't notice yet? because as of now, there are no such symptoms. Or would it just help to have a baseline, much as it's good to have a baseline DEXA for bone density?? Thanks for clarification. Don't know what type of tether either, can ask that when we get to this appointment as this doc will have both the MRI and the spine doc's notes. thanks for the reply. DK Moulton wrote: > Hi , > > You are right to be concerned about a nsg that wants to intervene because of hyper reflexes alone. Not that this doesn't mean he won't eventually need an untethering, but it seems to be a giant leap to go from hyper reflexes as only symptom to untethering. > > I would highly recommend a second opinion from a nsg that is very versed (and a pediatric nsg) with untetherings. I'm sure you've read that sexual dysfunction can occur with males (and females, although we all know that we have parts that the medical world do not consider non-operating just because of lack of sensation). Between that and possible bladder/bowel problems, I would also highly recommend seeing a neuro-urologist for a baseline exam. This should also help you make a fully informed decision regarding surgery. > > As has been said often on our list and is true - outcomes depend on so many variables and some we aren't even aware of. People live with this condition for their entire lives and never know it. Sometimes it's found during an autopsy without anyone knowing a person had a tethered cord. > > Do you know what type of tether? > > I know others will write with good advice also, but if you start with a second opinion and a uro appt., you'll at least have started making headway. > > Kathy > > > Intro and question > > > > I have limited time so will simply post an intro and ask for replies, > please guide me if you need more info or there is anything I can clarify > and I will try. > > I have a 15 year old son diagnosed with Scheuermann's kyphosis in > February based on an Xray. This spine specialist then tested his > reflexes. These were abnormally fast. We were referred for an MRI. > This doctor then called us and said my son has TCS and he referred us to > a pediatric neurosurgeon for an appointment this Wednesday. He said, > and my son's chiropractor confirmed his opinion, that my son would need > TCS release surgery, to prevent neurological problems. > > However, my basic questions are these. > > 1) As far as we can tell my son has no other symptoms besides the fast > reflexes at this time. He doesn't have the dimple on the back, no > muscle weakness that we know of (unless in some way the deformity of the > vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. > > 2) He is 15, he is not a small child with symptoms, nor is he an adult > yet, so that is puzzling me as to whether or not he should have surgery. > My understanding from what I've read online is that children should > always have it, and that adults shouldn't unless they have severe enough > symptoms. > > I am not one to rush into surgery. The risks concern me. > > 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if > symptoms start developing as he continues to grow we would still have > time to do the surgery. I understand that once symptoms are severe that > the surgery is less likely to help. > > 4) What is the risk of retethering after one surgery has been done? > seems like it's relatively high due to the scar tissue. He doesn't have > any now, why add some? > > 5) Can anyone direct me to studies that address the question of if > surgery is *necessary* when there are no current symptoms? > > So.... thank you for reading this email, and please respond if you have > any specific advice for me. > > Thank you, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Hi ~ I am an adult who had TC surgery at age 42 -- I was not diagnosed with this condition until my 30's, but I started developing problems when I was 18, after a fall. Many of us in this group were not diagnosed as children due to either symptoms not presenting themselves til later in life, or the lack of MRI's (my case). There are many different opinions with regard to doing surgery on a child when diagnosed -- it seems it is routinely done now to prevent symptoms. You are in a tough situation to make a decision as there are risks to this surgery and you are going to get different opinions. Everyone's experience with this syndrome is also different, and everyone's outcome from surgery seems to be different. Generally the goal of surgery is to prevent any neurological deterioration, and if you reverse anything that is a bonus. My personal opinion from hanging out with this online group listening to everyone's stories and my own experience -- would be to not do surgery if there are no symptoms but to CAREFULLLY monitor your son's symptoms with regular check-ups on an annual basis, and at the first sign of any neurological problems I would do the surgery. I am glad I didn't have surgery as a child as I was symptom free, but I do wish I'd had the surgery done as an 18 year old when I first started having problems. With regard to Scheuermann's kyphosis -- I don't know anything about this -- but if the TC could be the cause of this then that in my opinion would be an indication for surgery. Scar tissue formation is luck of the draw -- kind of -- some people's bodies create more than others -- also, the type of tether can make a difference. A tight/fatty filum release is less likely to re-tether (but can) than one with a lipoma for example. In many cases TC symptoms develop slowly -- the constant pull on the spinal cord causes gradual trauma to it -- often you are not aware of the symptoms til they are more severe -- or may just think what you are feeling is normal (eg bladder urgency -- if you've always had that you would just think that is the way it is). It is not uncommon also to make it to middle age and suddenly have symptoms develop quite quickly. I didn't really notice the nerve damage in my left leg til it got really bad - it happened so gradually. Regarding studies I don't know of any, maybe someone in the group does. Many of us are the result of not doing surgery as a child -- time will likely tell whether all these surgeries on young children were the best option, as this population ages I guess we will see. When you see your NS I would ask if there could be a link to Scheuermann's kyphosis and TC, what are the risks of doing the surgery now versus not doing the surgery and carefully monitoring your son. Youth is on his side -- recovery from surgery is much faster when you are younger. Good luck and I'm sure others will chime in. Dee To: tetheredspinalcord From: skookie@... Date: Mon, 28 Mar 2011 14:04:58 -0400 Subject: Intro and question I have limited time so will simply post an intro and ask for replies, please guide me if you need more info or there is anything I can clarify and I will try. I have a 15 year old son diagnosed with Scheuermann's kyphosis in February based on an Xray. This spine specialist then tested his reflexes. These were abnormally fast. We were referred for an MRI. This doctor then called us and said my son has TCS and he referred us to a pediatric neurosurgeon for an appointment this Wednesday. He said, and my son's chiropractor confirmed his opinion, that my son would need TCS release surgery, to prevent neurological problems. However, my basic questions are these. 1) As far as we can tell my son has no other symptoms besides the fast reflexes at this time. He doesn't have the dimple on the back, no muscle weakness that we know of (unless in some way the deformity of the vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. 2) He is 15, he is not a small child with symptoms, nor is he an adult yet, so that is puzzling me as to whether or not he should have surgery. My understanding from what I've read online is that children should always have it, and that adults shouldn't unless they have severe enough symptoms. I am not one to rush into surgery. The risks concern me. 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if symptoms start developing as he continues to grow we would still have time to do the surgery. I understand that once symptoms are severe that the surgery is less likely to help. 4) What is the risk of retethering after one surgery has been done? seems like it's relatively high due to the scar tissue. He doesn't have any now, why add some? 5) Can anyone direct me to studies that address the question of if surgery is *necessary* when there are no current symptoms? So.... thank you for reading this email, and please respond if you have any specific advice for me. Thank you, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 We have members from all over the globe. If you want to write and give the nsg's (yes, neurosurgeon - sorry) name, someone may be able to tell you if they'd had any experience with them or who they would also recommend. A urologist appt. will tell if there is anything going on neurologically/urologically with your son. I don't think they can tell you " if " , but can tell you how advanced if there is a problem and also what they recommend. Has your son had a pin-prick test yet? (Where they basically just take a pin and see if the person feels anything at all, a dull sensation or pin sensation). At the appt. where they found hyper-reflexes, did they take an instrument and run it diagonally across his foot; looking for a Babinski sign? If so - what was the outcome? One thing on your side right now is time - from what you've written this is not an emergent case and you should be able to get all and any tests done before you make your decision. It's a very scary diagnosis when you first hear it, but with time you learn more and more and you come to understand that there are worse things in the world. Has your son neared his full height yet? (Our son was 6'2 " at fifteen and full height.) Our son doesn't have a tethered cord, I do, but this matters only because when the untethering is done, scar tissue is left behind as with all surgeries and sometimes this can cause the spinal cord to " retether " . There are at the most basic level, two types of retethers, one that is symptomatic and one that is asymptomatic. Many people are retethered but it doesn't cause damage or pain. However, is a child is still growing and is retethered, then there is a higher chance that at some point they may need a follow-up untethering - not a certainty, but if you think about the mechanics of a tether in a growing child, it makes sense that there is a need at times. Hang in there - bring someone with you both to the nsg appt. to record all comments, suggestions and his/her replies to your questions. Write down all of your questions and your son's before going and ask all of them. Doctors usually prefer patients to write questions and have someone with them to record answers - it helps them out in the long run. I'm sure the nsg will refer for more tests too. Also - when he refers to your son's MRI, ask him to show the MRI to you and explain to both/all of you exactly where he is seeing an anomaly and how it will effect him or has already. This will help you visualize where the problem is and what it is. Hang in there - Kathy Intro and question > > > > I have limited time so will simply post an intro and ask for replies, > please guide me if you need more info or there is anything I can clarify > and I will try. > > I have a 15 year old son diagnosed with Scheuermann's kyphosis in > February based on an Xray. This spine specialist then tested his > reflexes. These were abnormally fast. We were referred for an MRI. > This doctor then called us and said my son has TCS and he referred us to > a pediatric neurosurgeon for an appointment this Wednesday. He said, > and my son's chiropractor confirmed his opinion, that my son would need > TCS release surgery, to prevent neurological problems. > > However, my basic questions are these. > > 1) As far as we can tell my son has no other symptoms besides the fast > reflexes at this time. He doesn't have the dimple on the back, no > muscle weakness that we know of (unless in some way the deformity of the > vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. > > 2) He is 15, he is not a small child with symptoms, nor is he an adult > yet, so that is puzzling me as to whether or not he should have surgery. > My understanding from what I've read online is that children should > always have it, and that adults shouldn't unless they have severe enough > symptoms. > > I am not one to rush into surgery. The risks concern me. > > 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if > symptoms start developing as he continues to grow we would still have > time to do the surgery. I understand that once symptoms are severe that > the surgery is less likely to help. > > 4) What is the risk of retethering after one surgery has been done? > seems like it's relatively high due to the scar tissue. He doesn't have > any now, why add some? > > 5) Can anyone direct me to studies that address the question of if > surgery is *necessary* when there are no current symptoms? > > So.... thank you for reading this email, and please respond if you have > any specific advice for me. > > Thank you, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Actually I thought hypo reflexes or absent was more consistent with TC, but you probably can also have increased as a symptom. It might be a question to ask and clarify though when you see the neurosurgeon. > > I have limited time so will simply post an intro and ask for replies, > please guide me if you need more info or there is anything I can clarify > and I will try. > > I have a 15 year old son diagnosed with Scheuermann's kyphosis in > February based on an Xray. This spine specialist then tested his > reflexes. These were abnormally fast. We were referred for an MRI. > This doctor then called us and said my son has TCS and he referred us to > a pediatric neurosurgeon for an appointment this Wednesday. He said, > and my son's chiropractor confirmed his opinion, that my son would need > TCS release surgery, to prevent neurological problems. > > However, my basic questions are these. > > 1) As far as we can tell my son has no other symptoms besides the fast > reflexes at this time. He doesn't have the dimple on the back, no > muscle weakness that we know of (unless in some way the deformity of the > vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. > > 2) He is 15, he is not a small child with symptoms, nor is he an adult > yet, so that is puzzling me as to whether or not he should have surgery. > My understanding from what I've read online is that children should > always have it, and that adults shouldn't unless they have severe enough > symptoms. > > I am not one to rush into surgery. The risks concern me. > > 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if > symptoms start developing as he continues to grow we would still have > time to do the surgery. I understand that once symptoms are severe that > the surgery is less likely to help. > > 4) What is the risk of retethering after one surgery has been done? > seems like it's relatively high due to the scar tissue. He doesn't have > any now, why add some? > > 5) Can anyone direct me to studies that address the question of if > surgery is *necessary* when there are no current symptoms? > > So.... thank you for reading this email, and please respond if you have > any specific advice for me. > > Thank you, > -- > Jamison Griebenow, skookie@... > Blessed with husband Greg, Zachary c/s 8/95, > Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 > ~~~~~~~ > Learn more about recovery from a difficult birth here: > http://www.midwiferytoday.com/articles/healing_trauma.asp > > You can't pray for what you want, but what you have instead > You can only offer up your heart and ask that you be led > ~ Newcomer > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 I have both -- absent at the ankle and hyper at the knee. But I also have spondylolisthesis as well. But good question, don't really know the answer to that. Dee To: tetheredspinalcord From: stvtm@... Date: Mon, 28 Mar 2011 18:34:59 +0000 Subject: Re: Intro and question Actually I thought hypo reflexes or absent was more consistent with TC, but you probably can also have increased as a symptom. It might be a question to ask and clarify though when you see the neurosurgeon. > > I have limited time so will simply post an intro and ask for replies, > please guide me if you need more info or there is anything I can clarify > and I will try. > > I have a 15 year old son diagnosed with Scheuermann's kyphosis in > February based on an Xray. This spine specialist then tested his > reflexes. These were abnormally fast. We were referred for an MRI. > This doctor then called us and said my son has TCS and he referred us to > a pediatric neurosurgeon for an appointment this Wednesday. He said, > and my son's chiropractor confirmed his opinion, that my son would need > TCS release surgery, to prevent neurological problems. > > However, my basic questions are these. > > 1) As far as we can tell my son has no other symptoms besides the fast > reflexes at this time. He doesn't have the dimple on the back, no > muscle weakness that we know of (unless in some way the deformity of the > vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. > > 2) He is 15, he is not a small child with symptoms, nor is he an adult > yet, so that is puzzling me as to whether or not he should have surgery. > My understanding from what I've read online is that children should > always have it, and that adults shouldn't unless they have severe enough > symptoms. > > I am not one to rush into surgery. The risks concern me. > > 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if > symptoms start developing as he continues to grow we would still have > time to do the surgery. I understand that once symptoms are severe that > the surgery is less likely to help. > > 4) What is the risk of retethering after one surgery has been done? > seems like it's relatively high due to the scar tissue. He doesn't have > any now, why add some? > > 5) Can anyone direct me to studies that address the question of if > surgery is *necessary* when there are no current symptoms? > > So.... thank you for reading this email, and please respond if you have > any specific advice for me. > > Thank you, > -- > Jamison Griebenow, skookie@... > Blessed with husband Greg, Zachary c/s 8/95, > Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 > ~~~~~~~ > Learn more about recovery from a difficult birth here: > http://www.midwiferytoday.com/articles/healing_trauma.asp > > You can't pray for what you want, but what you have instead > You can only offer up your heart and ask that you be led > ~ Newcomer > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 I have some hyper some hypo...mixed signals. ________________________________ To: tetheredspinalcord Sent: Mon, March 28, 2011 1:34:59 PM Subject: Re: Intro and question  Actually I thought hypo reflexes or absent was more consistent with TC, but you probably can also have increased as a symptom. It might be a question to ask and clarify though when you see the neurosurgeon. > > I have limited time so will simply post an intro and ask for replies, > please guide me if you need more info or there is anything I can clarify > and I will try. > > I have a 15 year old son diagnosed with Scheuermann's kyphosis in > February based on an Xray. This spine specialist then tested his > reflexes. These were abnormally fast. We were referred for an MRI. > This doctor then called us and said my son has TCS and he referred us to > a pediatric neurosurgeon for an appointment this Wednesday. He said, > and my son's chiropractor confirmed his opinion, that my son would need > TCS release surgery, to prevent neurological problems. > > However, my basic questions are these. > > 1) As far as we can tell my son has no other symptoms besides the fast > reflexes at this time. He doesn't have the dimple on the back, no > muscle weakness that we know of (unless in some way the deformity of the > vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. > > 2) He is 15, he is not a small child with symptoms, nor is he an adult > yet, so that is puzzling me as to whether or not he should have surgery. > My understanding from what I've read online is that children should > always have it, and that adults shouldn't unless they have severe enough > symptoms. > > I am not one to rush into surgery. The risks concern me. > > 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if > symptoms start developing as he continues to grow we would still have > time to do the surgery. I understand that once symptoms are severe that > the surgery is less likely to help. > > 4) What is the risk of retethering after one surgery has been done? > seems like it's relatively high due to the scar tissue. He doesn't have > any now, why add some? > > 5) Can anyone direct me to studies that address the question of if > surgery is *necessary* when there are no current symptoms? > > So.... thank you for reading this email, and please respond if you have > any specific advice for me. > > Thank you, > -- > Jamison Griebenow, skookie@... > Blessed with husband Greg, Zachary c/s 8/95, > Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 > ~~~~~~~ > Learn more about recovery from a difficult birth here: > http://www.midwiferytoday.com/articles/healing_trauma.asp > > You can't pray for what you want, but what you have instead > You can only offer up your heart and ask that you be led > ~ Newcomer > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Very good questions! I agree with where you stand and I think my son's neurosurgeon would as well. In other countries, surgery is not recommended preventatively. However, I'm sure your doctors can advise you best, knowing all the details of your son's condition. He sounds like he is doing very well though! I think I'd go with that too! Best of luck, Holly ________________________________ To: tetheredspinalcord Sent: Mon, March 28, 2011 2:04:58 PM Subject: Intro and question I have limited time so will simply post an intro and ask for replies, please guide me if you need more info or there is anything I can clarify and I will try. I have a 15 year old son diagnosed with Scheuermann's kyphosis in February based on an Xray. This spine specialist then tested his reflexes. These were abnormally fast. We were referred for an MRI. This doctor then called us and said my son has TCS and he referred us to a pediatric neurosurgeon for an appointment this Wednesday. He said, and my son's chiropractor confirmed his opinion, that my son would need TCS release surgery, to prevent neurological problems. However, my basic questions are these. 1) As far as we can tell my son has no other symptoms besides the fast reflexes at this time. He doesn't have the dimple on the back, no muscle weakness that we know of (unless in some way the deformity of the vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. 2) He is 15, he is not a small child with symptoms, nor is he an adult yet, so that is puzzling me as to whether or not he should have surgery. My understanding from what I've read online is that children should always have it, and that adults shouldn't unless they have severe enough symptoms. I am not one to rush into surgery. The risks concern me. 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if symptoms start developing as he continues to grow we would still have time to do the surgery. I understand that once symptoms are severe that the surgery is less likely to help. 4) What is the risk of retethering after one surgery has been done? seems like it's relatively high due to the scar tissue. He doesn't have any now, why add some? 5) Can anyone direct me to studies that address the question of if surgery is *necessary* when there are no current symptoms? So.... thank you for reading this email, and please respond if you have any specific advice for me. Thank you, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 I know several people have responded to you already so I would just add that as someone who was diagnosed as an adult, I never knew I had bowel or bladder problems, intermittent weakness' nerve pain until I was diagnosed and looked back. In other words, since that was the way I " always " was, I thought it was normal. If a doc asked, " have any bowel or bladder issues? " I would say Nope! My weakness's were passed off as clumbsiness, my nerve pain as " growing pains " so just be sure they are asking your son very specific questions and that he isnt too embarrassed to answer honestly (being a teenager).  ________________________________ To: tetheredspinalcord Sent: Mon, March 28, 2011 1:04:58 PM Subject: Intro and question  I have limited time so will simply post an intro and ask for replies, please guide me if you need more info or there is anything I can clarify and I will try. I have a 15 year old son diagnosed with Scheuermann's kyphosis in February based on an Xray. This spine specialist then tested his reflexes. These were abnormally fast. We were referred for an MRI. This doctor then called us and said my son has TCS and he referred us to a pediatric neurosurgeon for an appointment this Wednesday. He said, and my son's chiropractor confirmed his opinion, that my son would need TCS release surgery, to prevent neurological problems. However, my basic questions are these. 1) As far as we can tell my son has no other symptoms besides the fast reflexes at this time. He doesn't have the dimple on the back, no muscle weakness that we know of (unless in some way the deformity of the vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. 2) He is 15, he is not a small child with symptoms, nor is he an adult yet, so that is puzzling me as to whether or not he should have surgery. My understanding from what I've read online is that children should always have it, and that adults shouldn't unless they have severe enough symptoms. I am not one to rush into surgery. The risks concern me. 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if symptoms start developing as he continues to grow we would still have time to do the surgery. I understand that once symptoms are severe that the surgery is less likely to help. 4) What is the risk of retethering after one surgery has been done? seems like it's relatively high due to the scar tissue. He doesn't have any now, why add some? 5) Can anyone direct me to studies that address the question of if surgery is *necessary* when there are no current symptoms? So.... thank you for reading this email, and please respond if you have any specific advice for me. Thank you, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 brings up a really good point. Many of us, as said have had symptoms since they were young and thought that it was normal. (Me included.) Does anyone have a good and reputable site with a symptom list for children so she can look it over with her son? He may not be willing to discuss sensitive issues with you, but if he sees something on the list, he may be willing to bring it up at some point, or at least tell the doctor. Which may give rise to giving him some personal time with the nsg - you'd be amazed at what kids will say or admit without a mom around (I have four grown children and learned the hard say to never say never.) Kathy Intro and question I have limited time so will simply post an intro and ask for replies, please guide me if you need more info or there is anything I can clarify and I will try. I have a 15 year old son diagnosed with Scheuermann's kyphosis in February based on an Xray. This spine specialist then tested his reflexes. These were abnormally fast. We were referred for an MRI. This doctor then called us and said my son has TCS and he referred us to a pediatric neurosurgeon for an appointment this Wednesday. He said, and my son's chiropractor confirmed his opinion, that my son would need TCS release surgery, to prevent neurological problems. However, my basic questions are these. 1) As far as we can tell my son has no other symptoms besides the fast reflexes at this time. He doesn't have the dimple on the back, no muscle weakness that we know of (unless in some way the deformity of the vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. 2) He is 15, he is not a small child with symptoms, nor is he an adult yet, so that is puzzling me as to whether or not he should have surgery. My understanding from what I've read online is that children should always have it, and that adults shouldn't unless they have severe enough symptoms. I am not one to rush into surgery. The risks concern me. 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if symptoms start developing as he continues to grow we would still have time to do the surgery. I understand that once symptoms are severe that the surgery is less likely to help. 4) What is the risk of retethering after one surgery has been done? seems like it's relatively high due to the scar tissue. He doesn't have any now, why add some? 5) Can anyone direct me to studies that address the question of if surgery is *necessary* when there are no current symptoms? So.... thank you for reading this email, and please respond if you have any specific advice for me. Thank you, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Dee, thank you. Can the surgeon tell us from the MRI whether he has the fatty filum attachment or the lipoma? Thanks, Dee Allaert wrote: > Hi ~ > > I am an adult who had TC surgery at age 42 -- I was not diagnosed with this condition until my 30's, but I started developing problems when I was 18, after a fall. Many of us in this group were not diagnosed as children due to either symptoms not presenting themselves til later in life, or the lack of MRI's (my case). > > There are many different opinions with regard to doing surgery on a child when diagnosed -- it seems it is routinely done now to prevent symptoms. You are in a tough situation to make a decision as there are risks to this surgery and you are going to get different opinions. Everyone's experience with this syndrome is also different, and everyone's outcome from surgery seems to be different. Generally the goal of surgery is to prevent any neurological deterioration, and if you reverse anything that is a bonus. > > My personal opinion from hanging out with this online group listening to everyone's stories and my own experience -- would be to not do surgery if there are no symptoms but to CAREFULLLY monitor your son's symptoms with regular check-ups on an annual basis, and at the first sign of any neurological problems I would do the surgery. I am glad I didn't have surgery as a child as I was symptom free, but I do wish I'd had the surgery done as an 18 year old when I first started having problems. > > With regard to Scheuermann's kyphosis -- I don't know anything about this -- but if the TC could be the cause of this then that in my opinion would be an indication for surgery. > > Scar tissue formation is luck of the draw -- kind of -- some people's bodies create more than others -- also, the type of tether can make a difference. A tight/fatty filum release is less likely to re-tether (but can) than one with a lipoma for example. > > In many cases TC symptoms develop slowly -- the constant pull on the spinal cord causes gradual trauma to it -- often you are not aware of the symptoms til they are more severe -- or may just think what you are feeling is normal (eg bladder urgency -- if you've always had that you would just think that is the way it is). It is not uncommon also to make it to middle age and suddenly have symptoms develop quite quickly. I didn't really notice the nerve damage in my left leg til it got really bad - it happened so gradually. > > Regarding studies I don't know of any, maybe someone in the group does. Many of us are the result of not doing surgery as a child -- time will likely tell whether all these surgeries on young children were the best option, as this population ages I guess we will see. > > When you see your NS I would ask if there could be a link to Scheuermann's kyphosis and TC, what are the risks of doing the surgery now versus not doing the surgery and carefully monitoring your son. Youth is on his side -- recovery from surgery is much faster when you are younger. > > Good luck and I'm sure others will chime in. > > Dee > > > > > > > > > > To: tetheredspinalcord > From: skookie@... > Date: Mon, 28 Mar 2011 14:04:58 -0400 > Subject: Intro and question > > > > > > > I have limited time so will simply post an intro and ask for replies, > please guide me if you need more info or there is anything I can clarify > and I will try. > > I have a 15 year old son diagnosed with Scheuermann's kyphosis in > February based on an Xray. This spine specialist then tested his > reflexes. These were abnormally fast. We were referred for an MRI. > This doctor then called us and said my son has TCS and he referred us to > a pediatric neurosurgeon for an appointment this Wednesday. He said, > and my son's chiropractor confirmed his opinion, that my son would need > TCS release surgery, to prevent neurological problems. > > However, my basic questions are these. > > 1) As far as we can tell my son has no other symptoms besides the fast > reflexes at this time. He doesn't have the dimple on the back, no > muscle weakness that we know of (unless in some way the deformity of the > vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. > > 2) He is 15, he is not a small child with symptoms, nor is he an adult > yet, so that is puzzling me as to whether or not he should have surgery. > My understanding from what I've read online is that children should > always have it, and that adults shouldn't unless they have severe enough > symptoms. > > I am not one to rush into surgery. The risks concern me. > > 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if > symptoms start developing as he continues to grow we would still have > time to do the surgery. I understand that once symptoms are severe that > the surgery is less likely to help. > > 4) What is the risk of retethering after one surgery has been done? > seems like it's relatively high due to the scar tissue. He doesn't have > any now, why add some? > > 5) Can anyone direct me to studies that address the question of if > surgery is *necessary* when there are no current symptoms? > > So.... thank you for reading this email, and please respond if you have > any specific advice for me. > > Thank you, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 thanks! stvtm wrote: > Actually I thought hypo reflexes or absent was more consistent with TC, but you probably can also have increased as a symptom. It might be a question to ask and clarify though when you see the neurosurgeon. > > > >>I have limited time so will simply post an intro and ask for replies, >>please guide me if you need more info or there is anything I can clarify >>and I will try. >> >>I have a 15 year old son diagnosed with Scheuermann's kyphosis in >>February based on an Xray. This spine specialist then tested his >>reflexes. These were abnormally fast. We were referred for an MRI. >>This doctor then called us and said my son has TCS and he referred us to >>a pediatric neurosurgeon for an appointment this Wednesday. He said, >>and my son's chiropractor confirmed his opinion, that my son would need >>TCS release surgery, to prevent neurological problems. >> >>However, my basic questions are these. >> >>1) As far as we can tell my son has no other symptoms besides the fast >>reflexes at this time. He doesn't have the dimple on the back, no >>muscle weakness that we know of (unless in some way the deformity of the >>vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. >> >>2) He is 15, he is not a small child with symptoms, nor is he an adult >>yet, so that is puzzling me as to whether or not he should have surgery. >> My understanding from what I've read online is that children should >>always have it, and that adults shouldn't unless they have severe enough >>symptoms. >> >>I am not one to rush into surgery. The risks concern me. >> >>3) Do symptoms of TCS develop gradually or overnight? I'm thinking if >>symptoms start developing as he continues to grow we would still have >>time to do the surgery. I understand that once symptoms are severe that >>the surgery is less likely to help. >> >>4) What is the risk of retethering after one surgery has been done? >>seems like it's relatively high due to the scar tissue. He doesn't have >>any now, why add some? >> >>5) Can anyone direct me to studies that address the question of if >>surgery is *necessary* when there are no current symptoms? >> >>So.... thank you for reading this email, and please respond if you have >>any specific advice for me. >> >>Thank you, >>-- >> Jamison Griebenow, skookie@... >>Blessed with husband Greg, Zachary c/s 8/95, >>Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 >>~~~~~~~ >>Learn more about recovery from a difficult birth here: >>http://www.midwiferytoday.com/articles/healing_trauma.asp >> >>You can't pray for what you want, but what you have instead >>You can only offer up your heart and ask that you be led >> ~ Newcomer >> > > > > > > ------------------------------------ > > NOT MEDICAL ADVICE. We Are Not Doctors. > Need help with list?Email Darlene: darlene_self@... or > : hollygolightly1916@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Yup, should be pretty easy to see. It is likely already in the report if you had a copy of it.. Ask at your appt. To: tetheredspinalcord From: skookie@... Date: Mon, 28 Mar 2011 17:45:47 -0400 Subject: Re: Intro and question Dee, thank you. Can the surgeon tell us from the MRI whether he has the fatty filum attachment or the lipoma? Thanks, Dee Allaert wrote: > Hi ~ > > I am an adult who had TC surgery at age 42 -- I was not diagnosed with this condition until my 30's, but I started developing problems when I was 18, after a fall. Many of us in this group were not diagnosed as children due to either symptoms not presenting themselves til later in life, or the lack of MRI's (my case). > > There are many different opinions with regard to doing surgery on a child when diagnosed -- it seems it is routinely done now to prevent symptoms. You are in a tough situation to make a decision as there are risks to this surgery and you are going to get different opinions. Everyone's experience with this syndrome is also different, and everyone's outcome from surgery seems to be different. Generally the goal of surgery is to prevent any neurological deterioration, and if you reverse anything that is a bonus. > > My personal opinion from hanging out with this online group listening to everyone's stories and my own experience -- would be to not do surgery if there are no symptoms but to CAREFULLLY monitor your son's symptoms with regular check-ups on an annual basis, and at the first sign of any neurological problems I would do the surgery. I am glad I didn't have surgery as a child as I was symptom free, but I do wish I'd had the surgery done as an 18 year old when I first started having problems. > > With regard to Scheuermann's kyphosis -- I don't know anything about this -- but if the TC could be the cause of this then that in my opinion would be an indication for surgery. > > Scar tissue formation is luck of the draw -- kind of -- some people's bodies create more than others -- also, the type of tether can make a difference. A tight/fatty filum release is less likely to re-tether (but can) than one with a lipoma for example. > > In many cases TC symptoms develop slowly -- the constant pull on the spinal cord causes gradual trauma to it -- often you are not aware of the symptoms til they are more severe -- or may just think what you are feeling is normal (eg bladder urgency -- if you've always had that you would just think that is the way it is). It is not uncommon also to make it to middle age and suddenly have symptoms develop quite quickly. I didn't really notice the nerve damage in my left leg til it got really bad - it happened so gradually. > > Regarding studies I don't know of any, maybe someone in the group does. Many of us are the result of not doing surgery as a child -- time will likely tell whether all these surgeries on young children were the best option, as this population ages I guess we will see. > > When you see your NS I would ask if there could be a link to Scheuermann's kyphosis and TC, what are the risks of doing the surgery now versus not doing the surgery and carefully monitoring your son. Youth is on his side -- recovery from surgery is much faster when you are younger. > > Good luck and I'm sure others will chime in. > > Dee > > > > > > > > > > To: tetheredspinalcord > From: skookie@... > Date: Mon, 28 Mar 2011 14:04:58 -0400 > Subject: Intro and question > > > > > > > I have limited time so will simply post an intro and ask for replies, > please guide me if you need more info or there is anything I can clarify > and I will try. > > I have a 15 year old son diagnosed with Scheuermann's kyphosis in > February based on an Xray. This spine specialist then tested his > reflexes. These were abnormally fast. We were referred for an MRI. > This doctor then called us and said my son has TCS and he referred us to > a pediatric neurosurgeon for an appointment this Wednesday. He said, > and my son's chiropractor confirmed his opinion, that my son would need > TCS release surgery, to prevent neurological problems. > > However, my basic questions are these. > > 1) As far as we can tell my son has no other symptoms besides the fast > reflexes at this time. He doesn't have the dimple on the back, no > muscle weakness that we know of (unless in some way the deformity of the > vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. > > 2) He is 15, he is not a small child with symptoms, nor is he an adult > yet, so that is puzzling me as to whether or not he should have surgery. > My understanding from what I've read online is that children should > always have it, and that adults shouldn't unless they have severe enough > symptoms. > > I am not one to rush into surgery. The risks concern me. > > 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if > symptoms start developing as he continues to grow we would still have > time to do the surgery. I understand that once symptoms are severe that > the surgery is less likely to help. > > 4) What is the risk of retethering after one surgery has been done? > seems like it's relatively high due to the scar tissue. He doesn't have > any now, why add some? > > 5) Can anyone direct me to studies that address the question of if > surgery is *necessary* when there are no current symptoms? > > So.... thank you for reading this email, and please respond if you have > any specific advice for me. > > Thank you, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 This is a good point. very possible to have issues but not know it. Does anyone know of such a list? written from a kids' or teens' perspective? Because I basically know the symptoms as I've found online so far, and don't think he has them, but we could definitely be missing something. thanks, DK Moulton wrote: > brings up a really good point. Many of us, as said have had symptoms since they were young and thought that it was normal. (Me included.) > > Does anyone have a good and reputable site with a symptom list for children so she can look it over with her son? He may not be willing to discuss sensitive issues with you, but if he sees something on the list, he may be willing to bring it up at some point, or at least tell the doctor. Which may give rise to giving him some personal time with the nsg - you'd be amazed at what kids will say or admit without a mom around (I have four grown children and learned the hard say to never say never.) > > Kathy > Re: Intro and question > > > > I know several people have responded to you already so I would just add that as > someone who was diagnosed as an adult, I never knew I had bowel or bladder > problems, intermittent weakness' nerve pain until I was diagnosed and looked > back. In other words, since that was the way I " always " was, I thought it was > normal. If a doc asked, " have any bowel or bladder issues? " I would say Nope! > My weakness's were passed off as clumbsiness, my nerve pain as " growing pains " > so just be sure they are asking your son very specific questions and that he > isnt too embarrassed to answer honestly (being a teenager). > > -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 I remember as a child I always seemed to have no warning that I had to go to the bathroom -- I remember using a lot of public washrooms! I just thought this was normal (although looking back my friends never had to go!). Also, my mom always bugged me about toeing in on one foot -- who knew it was from my weak left leg from TC. A smaller left foot - what a pain but again just seemed normal. Also -- I was very athletic -- but had zero flexiblity compared to anyone else. Don't think I ever mentioned any of this to my mom as it didn't seem like a big deal, just the way things were. Also, I used to get such stiff sore legs after cycling in my 20's (did a lot of long distance cycling back then) -- my friends didn't. This didn't stop me and I didn't realize what was up til I look back now. then really sore feet in my 20's -- I couldn't walk around the block! At the time I never related any of these things to my back until I was diagnosed with TC and looked back on my life. Dee To: tetheredspinalcord From: skookie@... Date: Mon, 28 Mar 2011 18:42:25 -0400 Subject: Re: Intro and question This is a good point. very possible to have issues but not know it. Does anyone know of such a list? written from a kids' or teens' perspective? Because I basically know the symptoms as I've found online so far, and don't think he has them, but we could definitely be missing something. thanks, DK Moulton wrote: > brings up a really good point. Many of us, as said have had symptoms since they were young and thought that it was normal. (Me included.) > > Does anyone have a good and reputable site with a symptom list for children so she can look it over with her son? He may not be willing to discuss sensitive issues with you, but if he sees something on the list, he may be willing to bring it up at some point, or at least tell the doctor. Which may give rise to giving him some personal time with the nsg - you'd be amazed at what kids will say or admit without a mom around (I have four grown children and learned the hard say to never say never.) > > Kathy > Re: Intro and question > > > > I know several people have responded to you already so I would just add that as > someone who was diagnosed as an adult, I never knew I had bowel or bladder > problems, intermittent weakness' nerve pain until I was diagnosed and looked > back. In other words, since that was the way I " always " was, I thought it was > normal. If a doc asked, " have any bowel or bladder issues? " I would say Nope! > My weakness's were passed off as clumbsiness, my nerve pain as " growing pains " > so just be sure they are asking your son very specific questions and that he > isnt too embarrassed to answer honestly (being a teenager). > > -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Dee Allaert wrote: > I remember as a child I always seemed to have no warning that I had to go to the bathroom -- I remember using a lot of public washrooms! I just thought this was normal (although looking back my friends never had to go!). Also, my mom always bugged me about toeing in on one foot -- who knew it was from my weak left leg from TC. A smaller left foot - what a pain but again just seemed normal. Also -- I was very athletic -- but had zero flexiblity compared to anyone else. Don't think I ever mentioned any of this to my mom as it didn't seem like a big deal, just the way things were. Also, I used to get such stiff sore legs after cycling in my 20's (did a lot of long distance cycling back then) -- my friends didn't. This didn't stop me and I didn't realize what was up til I look back now. then really sore feet in my 20's -- I couldn't walk around the block! At the time I never related any of these things to my back until I was diagnosed with TC and looked back on my lif e. > Dee, thanks for the reply. -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Holly wrote: > Very good questions! I agree with where you stand and I think my son's > neurosurgeon would as well. In other countries, surgery is not > recommended preventatively. However, I'm sure your doctors can advise you best, > knowing all the details of your son's condition. He sounds like he is doing > very well though! I think I'd go with that too! Holly, thank you for your reply. You refer to " other countries " having different protocols. Can you please elaborate? Do you have personal experience, or know why the protocols are different? Thank you so much, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 wrote: I would say Nope! > My weakness's were passed off as clumbsiness, my nerve pain as " growing pains " > so just be sure they are asking your son very specific questions and that he > isnt too embarrassed to answer honestly (being a teenager). On this note, I believe one of you mentioned sexual difficulties being related to TCS. So I'm sure I understand, I will go ahead and ask. Are you referring to men/boys being unable to ejaculate due to the neurological deficits? I don't mind discussing this with him as we have a good relationship and I know he would understand why I'm asking. However in his case, his function may be affected, already, by the fact that he is taking medications for anxiety. So if he is unable to reach a climax, I can't see how we could differentiate why.... thanks for a reply. -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Kathy, thanks for this reply. Can anyone tell me what they know about Gump in Louisville Kentucky, as a nsg? Thank you! I don't know about the pinprick test or the Babinski one as my husband took him to the appointment with the spine specialist. We will see about those things as well when we go to the nsg. thanks. DK Moulton wrote: > We have members from all over the globe. If you want to write and give the nsg's (yes, neurosurgeon - sorry) name, someone may be able to tell you if they'd had any experience with them or who they would also recommend. > > A urologist appt. will tell if there is anything going on neurologically/urologically with your son. I don't think they can tell you " if " , but can tell you how advanced if there is a problem and also what they recommend. Has your son had a pin-prick test yet? (Where they basically just take a pin and see if the person feels anything at all, a dull sensation or pin sensation). At the appt. where they found hyper-reflexes, did they take an instrument and run it diagonally across his foot; looking for a Babinski sign? If so - what was the outcome? > > One thing on your side right now is time - from what you've written this is not an emergent case and you should be able to get all and any tests done before you make your decision. It's a very scary diagnosis when you first hear it, but with time you learn more and more and you come to understand that there are worse things in the world. > > Has your son neared his full height yet? (Our son was 6'2 " at fifteen and full height.) Our son doesn't have a tethered cord, I do, but this matters only because when the untethering is done, scar tissue is left behind as with all surgeries and sometimes this can cause the spinal cord to " retether " . > > There are at the most basic level, two types of retethers, one that is symptomatic and one that is asymptomatic. Many people are retethered but it doesn't cause damage or pain. However, is a child is still growing and is retethered, then there is a higher chance that at some point they may need a follow-up untethering - not a certainty, but if you think about the mechanics of a tether in a growing child, it makes sense that there is a need at times. > > Hang in there - bring someone with you both to the nsg appt. to record all comments, suggestions and his/her replies to your questions. Write down all of your questions and your son's before going and ask all of them. Doctors usually prefer patients to write questions and have someone with them to record answers - it helps them out in the long run. I'm sure the nsg will refer for more tests too. > > Also - when he refers to your son's MRI, ask him to show the MRI to you and explain to both/all of you exactly where he is seeing an anomaly and how it will effect him or has already. This will help you visualize where the problem is and what it is. > > Hang in there - > > Kathy > > > Intro and question > > > > > > > > I have limited time so will simply post an intro and ask for replies, > > please guide me if you need more info or there is anything I can clarify > > and I will try. > > > > I have a 15 year old son diagnosed with Scheuermann's kyphosis in > > February based on an Xray. This spine specialist then tested his > > reflexes. These were abnormally fast. We were referred for an MRI. > > This doctor then called us and said my son has TCS and he referred us to > > a pediatric neurosurgeon for an appointment this Wednesday. He said, > > and my son's chiropractor confirmed his opinion, that my son would need > > TCS release surgery, to prevent neurological problems. > > > > However, my basic questions are these. > > > > 1) As far as we can tell my son has no other symptoms besides the fast > > reflexes at this time. He doesn't have the dimple on the back, no > > muscle weakness that we know of (unless in some way the deformity of the > > vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc. > > > > 2) He is 15, he is not a small child with symptoms, nor is he an adult > > yet, so that is puzzling me as to whether or not he should have surgery. > > My understanding from what I've read online is that children should > > always have it, and that adults shouldn't unless they have severe enough > > symptoms. > > > > I am not one to rush into surgery. The risks concern me. > > > > 3) Do symptoms of TCS develop gradually or overnight? I'm thinking if > > symptoms start developing as he continues to grow we would still have > > time to do the surgery. I understand that once symptoms are severe that > > the surgery is less likely to help. > > > > 4) What is the risk of retethering after one surgery has been done? > > seems like it's relatively high due to the scar tissue. He doesn't have > > any now, why add some? > > > > 5) Can anyone direct me to studies that address the question of if > > surgery is *necessary* when there are no current symptoms? > > > > So.... thank you for reading this email, and please respond if you have > > any specific advice for me. -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Our NS said in Europe the statistics are the reverse from those of the USA. Here, they tell you, if you have a detethering as a baby, there is only a 20-30% chance of retethering, or having symptoms later of a tethering spinal cord. In Europe, where surgery is not done preventatively, there is a 70% chance of symptoms developing in the absence of surgical intervention. I think some sources will actually admit with longterm follow up, the statistics on the preventative surgery are less favorable. Our son is in that bracket. He was asymptomatic up until just after he turned 8 years old. We are hoping his symptoms will stablize as surgery has not been recommended up to two opinions. Instead we have been informed medical management is our best option. In other words, they want him to take Ditropan for bladder spasms. I can't say I don't worry about his kidneys, or his bowels, or his future sex life, or his mobility, and wonder if waiting and watching is the best. So, I think I am going to seek a 3rd opinion from Dr. Frim in Chicago. Everyone raves about him, and he is only 5 hours away from us. It seems many of these NS will review a patients case through correspondence as well. This group has really been a great resource for us, and support! I hope you find the answers you need in a timely manner! It is hard to wait, not knowing what the plan is going to be, or if our children are going to be okay. But the people here have lived it, and I am really impressed by them. Take care, Holly ________________________________ To: tetheredspinalcord Sent: Mon, March 28, 2011 7:34:36 PM Subject: Re: Intro and question Holly wrote: > Very good questions! I agree with where you stand and I think my son's > neurosurgeon would as well. In other countries, surgery is not > recommended preventatively. However, I'm sure your doctors can advise you >best, > > knowing all the details of your son's condition. He sounds like he is doing > very well though! I think I'd go with that too! Holly, thank you for your reply. You refer to " other countries " having different protocols. Can you please elaborate? Do you have personal experience, or know why the protocols are different? Thank you so much, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 I should also add, my son has a lipomyelomeningocele, so those stats may only apply for his condition. ________________________________ To: tetheredspinalcord Sent: Mon, March 28, 2011 8:58:54 PM Subject: Re: Intro and question Our NS said in Europe the statistics are the reverse from those of the USA. Here, they tell you, if you have a detethering as a baby, there is only a 20-30% chance of retethering, or having symptoms later of a tethering spinal cord. In Europe, where surgery is not done preventatively, there is a 70% chance of symptoms developing in the absence of surgical intervention. I think some sources will actually admit with longterm follow up, the statistics on the preventative surgery are less favorable. Our son is in that bracket. He was asymptomatic up until just after he turned 8 years old. We are hoping his symptoms will stablize as surgery has not been recommended up to two opinions. Instead we have been informed medical management is our best option. In other words, they want him to take Ditropan for bladder spasms. I can't say I don't worry about his kidneys, or his bowels, or his future sex life, or his mobility, and wonder if waiting and watching is the best. So, I think I am going to seek a 3rd opinion from Dr. Frim in Chicago. Everyone raves about him, and he is only 5 hours away from us. It seems many of these NS will review a patients case through correspondence as well. This group has really been a great resource for us, and support! I hope you find the answers you need in a timely manner! It is hard to wait, not knowing what the plan is going to be, or if our children are going to be okay. But the people here have lived it, and I am really impressed by them. Take care, Holly ________________________________ To: tetheredspinalcord Sent: Mon, March 28, 2011 7:34:36 PM Subject: Re: Intro and question Holly wrote: > Very good questions! I agree with where you stand and I think my son's > neurosurgeon would as well. In other countries, surgery is not > recommended preventatively. However, I'm sure your doctors can advise you >best, > > knowing all the details of your son's condition. He sounds like he is doing > very well though! I think I'd go with that too! Holly, thank you for your reply. You refer to " other countries " having different protocols. Can you please elaborate? Do you have personal experience, or know why the protocols are different? Thank you so much, -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Wasnt necessarily referring to that in particular although that should surely be discussed. I was thinking more along bowel and bladder issues. For instance, I have always had to physically press on my " nether " region to have a bowel movement. I am not constipated, always a soft stool but it wont come out on its own (and I thought that was normal)....but....I have also had episodes of incontinence, soft stool not liquid, and didnt even realize it until I smelled something as I did not have the sensation to feel it there (I didnt think this was normal but I was too embarrassed to tell anyone). Have had episodes of urinary incontinence as well and quite often have to push on my lower abdomen to pee...stuff like that. Most kids try to hide incontinence or " private " issues. Also, being a boy there is a certain amount of ...self esteem that comes from being " tough " and not complaining (at least with my son)...so questions about pain might be answered minimally from that standpoint.  Many Blessings, ________________________________ To: tetheredspinalcord Sent: Mon, March 28, 2011 6:53:21 PM Subject: Re: Intro and question  wrote: I would say Nope! > My weakness's were passed off as clumbsiness, my nerve pain as " growing pains " > so just be sure they are asking your son very specific questions and that he > isnt too embarrassed to answer honestly (being a teenager). On this note, I believe one of you mentioned sexual difficulties being related to TCS. So I'm sure I understand, I will go ahead and ask. Are you referring to men/boys being unable to ejaculate due to the neurological deficits? I don't mind discussing this with him as we have a good relationship and I know he would understand why I'm asking. However in his case, his function may be affected, already, by the fact that he is taking medications for anxiety. So if he is unable to reach a climax, I can't see how we could differentiate why.... thanks for a reply. -- Jamison Griebenow, skookie@... Blessed with husband Greg, Zachary c/s 8/95, Helena Joy HBAC 8/00, and Beren Gustav HB 4/04 ~~~~~~~ Learn more about recovery from a difficult birth here: http://www.midwiferytoday.com/articles/healing_trauma.asp You can't pray for what you want, but what you have instead You can only offer up your heart and ask that you be led ~ Newcomer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 I am not familiar with such a list, but I believe there is an SBAA listserv just for teens with NTD. He may want to consider joining this list. Or, you might be able to join and ask the question and collect responses. Jenn > > > This is a good point. very possible to have issues but not know it. > Does anyone know of such a list? written from a kids' or teens' > perspective? Because I basically know the symptoms as I've found online > so far, and don't think he has them, but we could definitely be missing > something. > > thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 , The nsg should be able to look at his films and see the tether type. The only exception to this is if he has an occult TC (meaning that it ends at the appropriate location and a tether cannot be seen, but based on symptoms and upon visualizing during surgery it is tethered). If it is an obvious tether and/or the radiologist is experienced in Dx TC, then it should also be in the radiologist report (if the MD had the radiologist read it. My nsg's do not look at the radiologist review. I have my scan and my appointment with the nsg is scheduled for right after my scan and I just hand carry my scans to the nsg office from radiology). Jenn > > > Dee, thank you. > > Can the surgeon tell us from the MRI whether he has the fatty filum > attachment or the lipoma? > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Griebenow said the following on 3/28/2011 5:53 PM: > On this note, I believe one of you mentioned sexual difficulties being > related to TCS. So I'm sure I understand, I will go ahead and ask. Are > you referring to men/boys being unable to ejaculate due to the > neurological deficits? > Let's just say, it may take more 'work'. Rick Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.