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Help! son is going for mri for tethered cord
Hi all - I am new here but not new to researching ( for years) what could be wrong with our son, 16 yrs. He has had trouble all his life with severe constipation and incontinence ( he has no feeling). We have been to many many doctors but we weren't getting anywhere til recently when we found an excellent gastroenterologist who has referred him to a motility specialist - we will be going soon but need to have an MRI done to looke for tethered cord or spinal bifida occulta as a possible cause of the colon not working.
Although our son has dealt with the incontinence to some degree all his life it got way worse around puberty - he grew a foot in about 2 years ( is 6'5" - no one in our family is that tall). He has been ruled out for marfan syndrome ( genetic condition where people can get very tall) and many other things. The incontinence got worse as he grew but also many other symptoms appeared - he is so sick now he cannot go to school, anything. He is very skinny but eats alot!
symptoms: constipation...incontinence...severe headaches...weakness ( could no longer walk to school)...vision problems...intolerance to heat...insomnia...nausea ( more I probably have forgotten right now)
I wonder about the connection between tethered cord and chiari malformation - also about the possible connection between chiari and pituitary tumor since he has grown so tall. Our gp was going to do a skull xray but it never got done ( we left him). I don't know if the MRI for tethered cord is just an mri of the base of the spine or the neck and skull as well. Is it generally the entire spine that is MRI'ed? If not I thiink I will discuss doing the entire spine with the new GI doc.
Also...my husband had hyperparathyroidism ( tumor on a parathyroid gland) ...it was removed but just thinking this could be a genetic thing as well ( MEN syndrome...multiple endocrine neoplasia)...that's another reason I wonder about a pituitary tumor.
I know I'm rambling...if anyone knows if the entire spine is usually MRI'd, if chiari and tethered cord go together and if pituitary tumors can also be associated. I think that after many years of going from one doc to the next, and years of research i think we will finally be getting answers for our son. I just want to be as well-informed as possible and make sure all the right tests are done now that we are referred to the right doc.
Any feedback would be appreciated - thank-you so much in advance.
Although our son has dealt with the incontinence to some degree all his life it got way worse around puberty - he grew a foot in about 2 years ( is 6'5" - no one in our family is that tall). He has been ruled out for marfan syndrome ( genetic condition where people can get very tall) and many other things. The incontinence got worse as he grew but also many other symptoms appeared - he is so sick now he cannot go to school, anything. He is very skinny but eats alot!
symptoms: constipation...incontinence...severe headaches...weakness ( could no longer walk to school)...vision problems...intolerance to heat...insomnia...nausea ( more I probably have forgotten right now)
I wonder about the connection between tethered cord and chiari malformation - also about the possible connection between chiari and pituitary tumor since he has grown so tall. Our gp was going to do a skull xray but it never got done ( we left him). I don't know if the MRI for tethered cord is just an mri of the base of the spine or the neck and skull as well. Is it generally the entire spine that is MRI'ed? If not I thiink I will discuss doing the entire spine with the new GI doc.
Also...my husband had hyperparathyroidism ( tumor on a parathyroid gland) ...it was removed but just thinking this could be a genetic thing as well ( MEN syndrome...multiple endocrine neoplasia)...that's another reason I wonder about a pituitary tumor.
I know I'm rambling...if anyone knows if the entire spine is usually MRI'd, if chiari and tethered cord go together and if pituitary tumors can also be associated. I think that after many years of going from one doc to the next, and years of research i think we will finally be getting answers for our son. I just want to be as well-informed as possible and make sure all the right tests are done now that we are referred to the right doc.
Any feedback would be appreciated - thank-you so much in advance.
Hi and welcome to the forum! I'm so sorry your son is having to go through this! I'm not sure if they will do full spinal mri or just lower spine but if it was me i would ask for a full mri including brain. And yes tethered cord is associated with chiari! There are quite a few things that can go with chiari such as tethered cord, a syrinx, csf blockage, and EDS (Ehlers-Danlos syndrome) which can have its own myriad of problems. I'm sure selma will have more info for you but i hope this helps some :) Shannon
COMMUNITY LEADER
HI and welcome to the Chiari forum.
As Shannon has mentioned yes, chiari and tethered cord and many other conditions are all inter related.
I am surprised that ur son is so tall as most with tethered cord so not get that tall.The fact the cord is tethered stops the growing and can cause scoliosis to form.
And as Shannon mentioned to rule out some of the other conditions u will need a brain MRI as well as a cervical spine, thoracic and lumbar MRI's for TC they usually only do the lumbar.
Some of the other issues that u may also want to rule out is Degenertive disk disease and look for bulging disks....as I recently found they can also block the flow of CSF.
The most important thing is to find a dr that works with these conditions all the time...a NS that specializes in Chiari is also a specialist for tethered cord.
Please see the list we have here on the forum and in our Health Pages.
I also have TC and am looking toward having the surgery in the future as I already had the PFD for chiari in May.
I hope u fiind the info and support u seek...I am glad to welcome u to our little family here, but sorry for the reason u had to seek us out.
"selma"
As Shannon has mentioned yes, chiari and tethered cord and many other conditions are all inter related.
I am surprised that ur son is so tall as most with tethered cord so not get that tall.The fact the cord is tethered stops the growing and can cause scoliosis to form.
And as Shannon mentioned to rule out some of the other conditions u will need a brain MRI as well as a cervical spine, thoracic and lumbar MRI's for TC they usually only do the lumbar.
Some of the other issues that u may also want to rule out is Degenertive disk disease and look for bulging disks....as I recently found they can also block the flow of CSF.
The most important thing is to find a dr that works with these conditions all the time...a NS that specializes in Chiari is also a specialist for tethered cord.
Please see the list we have here on the forum and in our Health Pages.
I also have TC and am looking toward having the surgery in the future as I already had the PFD for chiari in May.
I hope u fiind the info and support u seek...I am glad to welcome u to our little family here, but sorry for the reason u had to seek us out.
"selma"
Hello, and welcome as shannon expressed. I am so sorry to hear that your son is suffering so. I have one son with Tethered cord, and spina bifida occulta, and one son that we are in the process of trying to find out for sure if he has Chiari.
I can just tell you from my experience that when my son that has tethered cord had his first MRI, it was only of his lower spine, lumbar and sacral area. He too suffered with bladder/bowel problems as well as severe leg pain for some time before our family doc finally sent him in for MRI. I know that there is definately a link between tethered cord, and Chiari as they are both neural tubal defects. But our son w/tethered cord did not show any signs of Chiari. It was years after his first dx that they did a full spine ( brain included). In hindsight we probably should have asked for the full MRI right away.
As for our son with the Chiari, he is not showing the signs of tethered cord that our other son is.
Selma is so knowledgable of all the Chiari symptoms, and Shannon gave some great advice as well.
I will pray for your son and your family that you can get to the bottom of what is going on with him, and he will get some relief from his suffering.
Keep up the good work mom, and remember your mommy radar is rarely wrong, wo go with it.
Barb:)
I can just tell you from my experience that when my son that has tethered cord had his first MRI, it was only of his lower spine, lumbar and sacral area. He too suffered with bladder/bowel problems as well as severe leg pain for some time before our family doc finally sent him in for MRI. I know that there is definately a link between tethered cord, and Chiari as they are both neural tubal defects. But our son w/tethered cord did not show any signs of Chiari. It was years after his first dx that they did a full spine ( brain included). In hindsight we probably should have asked for the full MRI right away.
As for our son with the Chiari, he is not showing the signs of tethered cord that our other son is.
Selma is so knowledgable of all the Chiari symptoms, and Shannon gave some great advice as well.
I will pray for your son and your family that you can get to the bottom of what is going on with him, and he will get some relief from his suffering.
Keep up the good work mom, and remember your mommy radar is rarely wrong, wo go with it.
Barb:)
Thanx so much Shannon, Selma and Barb!
I suspected TC and chiari could be related from the research I've been doing. I think the MRI is going to be only for the lower lumbar. I'm at a crossroads right now about whether to get the full spine and head done. Our problem is that the wait list here for an MRI is 10 months ( unless you are dying or something - we're in canada)...the GI specialist can't place it as 'urgent' as it is classified as a chronic illness right now. So....we have to pay for the MRI ourselves if we want it done before the appt with the new specialist early in the new year ( and I think that is an absolute neccessity)... the MRI cost goes up depending on how much is being scanned! Starts around $1000. This recession hasn't been very nice to us ( as to many) and the MRI coupled with the travel and hotel costs alone are going to be very expensive. However, I do have an appt with our bank next week - we had been dealing with them anyhow about subdividing a lot from our property and getting finacing for that - think I will get that going a little bit faster so that we have the funds we are going to need. It's too important to come this far and not have the cash to get things done!
You mentioned that people with TC usually don't get that tall - that's why I wonder about possiblity of a pituitary tumor. Some research I've found shows that there is a correlation at times between chiari and PT. If anyone has info on that I'd really be interested. If we just get the lumber MRI done now and it doesn't show TC or occulta the docs may never do a full-spine/head MRI to look for all the other possibilities.
As for EDS I think the genetic doc would have thought of that when she assessed our son for Marfan Syndrome ( negative) as it too is a connective tissue disorder. But you never know - after the rounds of terrible doctors we've seen I wouldn't be suprised! Our son was tested for Hirschsprungs 6 years ago and now they can't even find the pathology to send to the new doc! I'm not impressed.
Thanx again SOOOO much for your warm welcomes, advice, info and encouragement. It's definately been a long struggle but we will find answers - I have a new optomism now ( can't say as much for our son - he's lost complete faith in the system - hopefully this new doc can regain some trust for him).
I will get on the phone next week and ask for the full-spine MRI.
bye for now...suzanne
I suspected TC and chiari could be related from the research I've been doing. I think the MRI is going to be only for the lower lumbar. I'm at a crossroads right now about whether to get the full spine and head done. Our problem is that the wait list here for an MRI is 10 months ( unless you are dying or something - we're in canada)...the GI specialist can't place it as 'urgent' as it is classified as a chronic illness right now. So....we have to pay for the MRI ourselves if we want it done before the appt with the new specialist early in the new year ( and I think that is an absolute neccessity)... the MRI cost goes up depending on how much is being scanned! Starts around $1000. This recession hasn't been very nice to us ( as to many) and the MRI coupled with the travel and hotel costs alone are going to be very expensive. However, I do have an appt with our bank next week - we had been dealing with them anyhow about subdividing a lot from our property and getting finacing for that - think I will get that going a little bit faster so that we have the funds we are going to need. It's too important to come this far and not have the cash to get things done!
You mentioned that people with TC usually don't get that tall - that's why I wonder about possiblity of a pituitary tumor. Some research I've found shows that there is a correlation at times between chiari and PT. If anyone has info on that I'd really be interested. If we just get the lumber MRI done now and it doesn't show TC or occulta the docs may never do a full-spine/head MRI to look for all the other possibilities.
As for EDS I think the genetic doc would have thought of that when she assessed our son for Marfan Syndrome ( negative) as it too is a connective tissue disorder. But you never know - after the rounds of terrible doctors we've seen I wouldn't be suprised! Our son was tested for Hirschsprungs 6 years ago and now they can't even find the pathology to send to the new doc! I'm not impressed.
Thanx again SOOOO much for your warm welcomes, advice, info and encouragement. It's definately been a long struggle but we will find answers - I have a new optomism now ( can't say as much for our son - he's lost complete faith in the system - hopefully this new doc can regain some trust for him).
I will get on the phone next week and ask for the full-spine MRI.
bye for now...suzanne
COMMUNITY LEADER
HI Suzanne....
I am not sure if u r aware of this but more than not TC doesn't show on the MRI...this is Y it is often referred to as occulta ...occulta means hidden....BUT, they have to figure out what is wrong...do u have info on drs that r familiar with chiari and tethered cord.I believe there was a list posted a while back if I can locate it I will pass it on to u...keep in mind u must research all drs as I have no info on them...this is just a list others from Canada have passed around.
I have heard that the PT can be affected with some with chiari and other related conditions....but I do not know nething on it.
Everyone here understands the frustration and the amount of pushing one must do to get the proper tests done to get the right dx.....
Good luck Suzanne !!
"selma"
I am not sure if u r aware of this but more than not TC doesn't show on the MRI...this is Y it is often referred to as occulta ...occulta means hidden....BUT, they have to figure out what is wrong...do u have info on drs that r familiar with chiari and tethered cord.I believe there was a list posted a while back if I can locate it I will pass it on to u...keep in mind u must research all drs as I have no info on them...this is just a list others from Canada have passed around.
I have heard that the PT can be affected with some with chiari and other related conditions....but I do not know nething on it.
Everyone here understands the frustration and the amount of pushing one must do to get the proper tests done to get the right dx.....
Good luck Suzanne !!
"selma"
Hi suzanne,
My son's tethered cord did show up on his Lumbar/sacral MRI. If this is all you can get right now, then get this as he is already having bladder/bowel problems like my son was and it was due to his tethered cord. Maybe this will get the ball rolling for you. But as Selma and Shannon said, it is so important to get a good neurosurgeon to care for your son. Many prayers your way
Barb :)
My son's tethered cord did show up on his Lumbar/sacral MRI. If this is all you can get right now, then get this as he is already having bladder/bowel problems like my son was and it was due to his tethered cord. Maybe this will get the ball rolling for you. But as Selma and Shannon said, it is so important to get a good neurosurgeon to care for your son. Many prayers your way
Barb :)
Selma...I thought that TC usually didn't show up on xray or CT scan and that is why they do the MRI. Guess it really depends on who is reading the scan - like you said, we need someone who specialises in that. I do however know that the doc we will be seeing is the head of the motility disorder center - they seem to have all the bells and whistles for research etc. I will ask when I phone next week who reads the MRI's - then of course I will research him ( or her) to see how qualified. I'm assuming they look for this all the time ( being a motility disorder center) and spinal problems being one of the first things to rule out ( not that anyone else ever thought of it).
Thanx for the info on PT and chiari. Even if they aren't linked doesn't mean more than one thing is going on. It is my gut feeling that PT should be investigated.
Just gotta keep on keeping on! Thanx again....suzanne
Thanx for the info on PT and chiari. Even if they aren't linked doesn't mean more than one thing is going on. It is my gut feeling that PT should be investigated.
Just gotta keep on keeping on! Thanx again....suzanne
COMMUNITY LEADER
It can also be hidden on a MRI as well, so just that u r aware of that.
I do know there r other criteria they look for like where the conus ends...if it ends lower than normal TS is suspected.
I sent u a list I found with drs in Canada ....look in the inbox here on MH......
I know there is info on teh PT gland and I wish I had more info on it for u......
Let me know if u find the list I sent ok and let me also know which drs r ok on it!!
"selma"
I do know there r other criteria they look for like where the conus ends...if it ends lower than normal TS is suspected.
I sent u a list I found with drs in Canada ....look in the inbox here on MH......
I know there is info on teh PT gland and I wish I had more info on it for u......
Let me know if u find the list I sent ok and let me also know which drs r ok on it!!
"selma"
Thanx Barb - didn't see your post earlier - must have been posting at the same time. I've never spoken to anyone else who has or who's child has had bowel problems - has your son been treated/surgery? Did it help? I so much want my son to have a normal life someday - he doesn't even know what that is!
Thanx Selma - I found it. Turns out that Dr. Hulbert is at the hospital that we are going to! And get this...he is likely a relative! I was helping my dad with his geneology a few years ago and we found some Hulberts in Alberta ( province where the foothills hospital is)...It is a rather uncommon name ( spelled a few different ways)- my dad traced his ancestors back to the 1400's and their migration to north america in the 1600's. Could be that he is a son or grandson of a relative my dad has already been in touch with. I will be sure to ask if he is the one who will be reading the MRI ( and get a copy of the family tree to him to see if indeed we are related)...any 'in' with the 'powers that be' is good in my opinion.
I will keep everything you have mentioned in mind...good to have the heads up and even just gettting to know the 'language' so that i can understand everything when my son has his appt at foothills hospital
Bye for now....suzanne
Thanx Selma - I found it. Turns out that Dr. Hulbert is at the hospital that we are going to! And get this...he is likely a relative! I was helping my dad with his geneology a few years ago and we found some Hulberts in Alberta ( province where the foothills hospital is)...It is a rather uncommon name ( spelled a few different ways)- my dad traced his ancestors back to the 1400's and their migration to north america in the 1600's. Could be that he is a son or grandson of a relative my dad has already been in touch with. I will be sure to ask if he is the one who will be reading the MRI ( and get a copy of the family tree to him to see if indeed we are related)...any 'in' with the 'powers that be' is good in my opinion.
I will keep everything you have mentioned in mind...good to have the heads up and even just gettting to know the 'language' so that i can understand everything when my son has his appt at foothills hospital
Bye for now....suzanne
COMMUNITY LEADER
Suzanne,
I am so glad u found it and I pray this guy is related and can help u out !!
What a co incidence !!
If I can help u with nething else, please let me know.
"selma"
I am so glad u found it and I pray this guy is related and can help u out !!
What a co incidence !!
If I can help u with nething else, please let me know.
"selma"
Selma,
Isn't that a coincidence! If we are related it was through members of the Hulbert family centuries ago but still...! I know that some of them ended up in Alberta ( foothills hospital area)...some are in the states ( always wondered if I could claim dual citizenship as the ancestors landed in masechucettes ( sp?). Course I'm just kidding about the dual citizen thing...just a family joke. So good to know that this doc is on the 'list' at the hospital we are going to...can't thank you enough for finding that piece of info.
I will have more questions as we go on with this but for now just have to let you know you have all been such a big help. Incredible.
suzanne
Isn't that a coincidence! If we are related it was through members of the Hulbert family centuries ago but still...! I know that some of them ended up in Alberta ( foothills hospital area)...some are in the states ( always wondered if I could claim dual citizenship as the ancestors landed in masechucettes ( sp?). Course I'm just kidding about the dual citizen thing...just a family joke. So good to know that this doc is on the 'list' at the hospital we are going to...can't thank you enough for finding that piece of info.
I will have more questions as we go on with this but for now just have to let you know you have all been such a big help. Incredible.
suzanne
COMMUNITY LEADER
Suzanne u r welcome ...keep in mind that I do not know how reliable that list is...so do some research by asking a lot of questions......and if it is a relative, not sure he could steer u wrong : )
"selma"
"selma"
I checked the doc out online ( dr. hurlbert) and he seems to have very good ratings. He's young ( from ontario, where my dad's family hails from). I guess he wouldn't be 'reading' the MRI ( a radiologist would do that right?) but maybe he would - I don't know. Questions I will have to ask. Talked to my dad and he thinks that there is a good chance our ancestory has crossed paths ( grandson of a brother of a great great great uncle or something like that ) ... definately a way to 'connect' if we have to - and even if we dont have to.
I'll write next week when I know more about appt times etc..and if we can get the full-spine mri done.
Question though...one symptom that is weird with our son - he doesnt' have a sense of smell. I used to think it was because he had 'accidents' and didn't want to own up to it ( that was many years ago)....he really can't smell much of anything - just wondering what that could be about if anything. Also...club foot...he was born with club foot and I've heard that that 'can be' indicative of TC.
suzanne
I'll write next week when I know more about appt times etc..and if we can get the full-spine mri done.
Question though...one symptom that is weird with our son - he doesnt' have a sense of smell. I used to think it was because he had 'accidents' and didn't want to own up to it ( that was many years ago)....he really can't smell much of anything - just wondering what that could be about if anything. Also...club foot...he was born with club foot and I've heard that that 'can be' indicative of TC.
suzanne
Hi Suzane, I think a full MRI scan is important for your son. As selma said TC dose not always show up but there are usualy other issues that point to TC such as cord compression, bone spurs etc. As Barb mantioned there is the possability of spina bifida. Shannon mentioned Syringomyelia and EDS. Other things to look for are split cord malformation, intradural cysts....A full spinal scan will show up any of these conditions....
Ray
Ray
Hey Suzanne,
My son never had surgery for his bowels, or his bladder. We have tried to follow a natural High fiber lots of fruit, and Muralax in juice when he is extremely constipated.
I think he will always deal with this, but this has become his normal, and he knows what he needs to do to keep his bowels moving, and what stops him up, which seems to be the typical fast food teenage diet. So it is a bit of a rollercoaster where his bowel is concerned. I try to sneak things into certain foods like ground flaxseed, making cookies with 1/2 whole wheat, finely chopping apricots and adding them to different foods. Whatever I can do. What also can help is a magnesium supplement, but you may want to check with your family doc first.
I am happy to hear that you may have a connection in the medical field. It never hurts to have someone that is familiar with Medical terms or that can read a scan, or help you with what are the right questions to ask.
Many prayers. Happy to help so let me know if you have any more questions.
Barb :)
My son never had surgery for his bowels, or his bladder. We have tried to follow a natural High fiber lots of fruit, and Muralax in juice when he is extremely constipated.
I think he will always deal with this, but this has become his normal, and he knows what he needs to do to keep his bowels moving, and what stops him up, which seems to be the typical fast food teenage diet. So it is a bit of a rollercoaster where his bowel is concerned. I try to sneak things into certain foods like ground flaxseed, making cookies with 1/2 whole wheat, finely chopping apricots and adding them to different foods. Whatever I can do. What also can help is a magnesium supplement, but you may want to check with your family doc first.
I am happy to hear that you may have a connection in the medical field. It never hurts to have someone that is familiar with Medical terms or that can read a scan, or help you with what are the right questions to ask.
Many prayers. Happy to help so let me know if you have any more questions.
Barb :)
I guess I'm a bit overwhelmed with the prospect of us actually getting closer to a diagnosis - it's been so long and we've been let down so many times. Of course I don't 'want' to find out my son has TC or something else like that but at the same time if it is I feel that time is of the essence - he's been getting progressively worse and something has to be done. Little angry that our medical either makes us wait or pay ourselves - 'specially when an MRI was something I had requested long ago and we could have already had it done. But i am grateful that it has been ordered now - better late than never.
I try flax and a variety of natural and other laxatives, can my own apricots, peaches etc ...large garden for fresh veggies - nothing seems to help. When he finally had the transit study test last month it showed food passes through the first day and just sits in the bowel for a week. He was off laxatives for that of course but on a high fibre diet throughout the course of the testing ( had to keep a diary of all foods for that week). I do all I can with diet but one doc last year had the gaul to imply that my son's constipation was my fault for letting him eat meat! Then he suggested we biopsy for hirschsprungs and I had to remind him that he already had ( hadn't even read through the file!). That's when he shrugged and sent us on our way. Where do these 'specialists' get their degrees?
Sorry to rant - better days are ahead I know. Thanx all....suzanne
I try flax and a variety of natural and other laxatives, can my own apricots, peaches etc ...large garden for fresh veggies - nothing seems to help. When he finally had the transit study test last month it showed food passes through the first day and just sits in the bowel for a week. He was off laxatives for that of course but on a high fibre diet throughout the course of the testing ( had to keep a diary of all foods for that week). I do all I can with diet but one doc last year had the gaul to imply that my son's constipation was my fault for letting him eat meat! Then he suggested we biopsy for hirschsprungs and I had to remind him that he already had ( hadn't even read through the file!). That's when he shrugged and sent us on our way. Where do these 'specialists' get their degrees?
Sorry to rant - better days are ahead I know. Thanx all....suzanne
COMMUNITY LEADER
No need to apologize for a rant, this is the place where it is ok and u will find others that totally understand....so rant when u feel like it....we have a rant thread on Mondays here in the forum.
I have IBS and bladder issues from TC and I do find red meats harder to digest and try to eat them less often....I stick with turkey, chicken, pork and fish.
I have IBS and bladder issues from TC and I do find red meats harder to digest and try to eat them less often....I stick with turkey, chicken, pork and fish.
I'll have to keep mondays in mind!
We don't eat much red meat either - same reason. I make alot of soups, but really, it doesn't seem to make much difference no matter what. Nuts of course are a definate no no. And foods that worked in the past as laxatives ( like peas) don't work anymore.
Despite what the MRI shows, I'm sure our son will have to have the colostomy bag - we've been told that several times - if it means a better quality of life then it has to be done - but still hoping for some miracle diagnosis/cure to prevent that.
We don't eat much red meat either - same reason. I make alot of soups, but really, it doesn't seem to make much difference no matter what. Nuts of course are a definate no no. And foods that worked in the past as laxatives ( like peas) don't work anymore.
Despite what the MRI shows, I'm sure our son will have to have the colostomy bag - we've been told that several times - if it means a better quality of life then it has to be done - but still hoping for some miracle diagnosis/cure to prevent that.
COMMUNITY LEADER
I am sure ur son feels the same way too......
have u tried fig newtons and red licorice?....they tend to work for me.......
I pray u find the dr with all the answers to help avoid the bag and gets u all back to a "normal" life.
"selma"
have u tried fig newtons and red licorice?....they tend to work for me.......
I pray u find the dr with all the answers to help avoid the bag and gets u all back to a "normal" life.
"selma"
He has absolutely refused to even discuss it with me or my husband - he listened to the GI when she tried to tell him he'd have a better quality of life. But they both left the subject til a later day, til all the testing info is in.
haven't tried the fig newtons - licorice doesnt do anything either. I usually make a yogurt blender drink with fruit, flax and hide the laxative (taste) in it as well. He has some kind of abnormality at the very rear end exit as well - doesn't work as it should ( spasms instead of pushing out)...just another piece of info that was in an old report the GI picked up on - one that no one else ever read or relayed to us.
a 'normal' life would be nice - would be good to get to the point where he felt as good as he did before puberty...and this suspicious ( in my mind) growth spurt/skyrocket.
haven't tried the fig newtons - licorice doesnt do anything either. I usually make a yogurt blender drink with fruit, flax and hide the laxative (taste) in it as well. He has some kind of abnormality at the very rear end exit as well - doesn't work as it should ( spasms instead of pushing out)...just another piece of info that was in an old report the GI picked up on - one that no one else ever read or relayed to us.
a 'normal' life would be nice - would be good to get to the point where he felt as good as he did before puberty...and this suspicious ( in my mind) growth spurt/skyrocket.
COMMUNITY LEADER
Gi issues and motility issues are common with TC and Chiari......
did u look into celiacs?...just a thought.......
Did they try ametiza for the spasms?
"selma"
did u look into celiacs?...just a thought.......
Did they try ametiza for the spasms?
"selma"
Ya know, I looked up spina bifida and TC years ago thinking it could be a possiblity but thought the docs would think I was crazy - I did mention it to the geneticist ( when we saw her concerning marfan) and she thought it should be looked into. I hadn't thought of chiari before but was familiar with it when it came up in my research this time as I had looked into it about a dozen years ago when I myself was having trouble with fatigue....so the research on that was kinda like going back in time for me.
Celiac has been tested for, as has crohns and a meriad of other things that can easily be tested for. Funny, when I told the new GI that crohns had been ruled out
( I was just telling her the history) she kinda laughed and said, "this isn't crohns!".
I've never heard of ametiza but will look it up. At the time of our son's manometry ( 5-6 years ago) the doc told me that the sphincter didn't work properly and suggested bio-feedback training. Well we never did that for a few reasons - one being my son was only 11 at the time and it was just far too embarrassing for him and then the only person trained in that ( around here) took maternity leave. It has been mentioned again since but the GI doesn't hold alot of faith in it in this case. I've also read that the response rate is very low...I always thought that the old doc was trying to put a bandaid on the problem with the biofeedback since he didn't have an answer. I also didn't hear about the spasms until a couple of months ago - no one told us that. I'm in the process of getting copies of whatever tests I can and will do so from now on.
I've heard a little bit about using botox - but the doc is concerned that anything done ( surgery to shorten the colon, botox) could make the incontinence worse since there is little to no feeling in that area. She and the new doc at foothills hospital want to know 'why' there is no feeling before just going in and doing radical sugery. Seems like a simple concept - find out why first- but she was the first to even try to find out the 'why'. I know the manometry and the hirscshrungs testing will be done again as well - so I think all is covered 'cept the full-spin MRI - have to make sure that is done, not just lower lumbar.
Anyhow...I'm babbling again...thanx for listening to me ( and congrats for getting through my lengthy posts!)...suzanne
Celiac has been tested for, as has crohns and a meriad of other things that can easily be tested for. Funny, when I told the new GI that crohns had been ruled out
( I was just telling her the history) she kinda laughed and said, "this isn't crohns!".
I've never heard of ametiza but will look it up. At the time of our son's manometry ( 5-6 years ago) the doc told me that the sphincter didn't work properly and suggested bio-feedback training. Well we never did that for a few reasons - one being my son was only 11 at the time and it was just far too embarrassing for him and then the only person trained in that ( around here) took maternity leave. It has been mentioned again since but the GI doesn't hold alot of faith in it in this case. I've also read that the response rate is very low...I always thought that the old doc was trying to put a bandaid on the problem with the biofeedback since he didn't have an answer. I also didn't hear about the spasms until a couple of months ago - no one told us that. I'm in the process of getting copies of whatever tests I can and will do so from now on.
I've heard a little bit about using botox - but the doc is concerned that anything done ( surgery to shorten the colon, botox) could make the incontinence worse since there is little to no feeling in that area. She and the new doc at foothills hospital want to know 'why' there is no feeling before just going in and doing radical sugery. Seems like a simple concept - find out why first- but she was the first to even try to find out the 'why'. I know the manometry and the hirscshrungs testing will be done again as well - so I think all is covered 'cept the full-spin MRI - have to make sure that is done, not just lower lumbar.
Anyhow...I'm babbling again...thanx for listening to me ( and congrats for getting through my lengthy posts!)...suzanne
COMMUNITY LEADER
HI Suzanne,
No worries on the posts...lol......
When I read u r thinking spina bifida, I am sure u r looking for mayb a splint cord like Ray mentioned...with SB the opening does not close and is evident at birth.
With TC the opening that stays open for SB closed, but a dimple is left behind....does ur son have the dimple?...or a patch of hair on his lower spine?
.....not sure if we discussed these b4
"selma"
No worries on the posts...lol......
When I read u r thinking spina bifida, I am sure u r looking for mayb a splint cord like Ray mentioned...with SB the opening does not close and is evident at birth.
With TC the opening that stays open for SB closed, but a dimple is left behind....does ur son have the dimple?...or a patch of hair on his lower spine?
.....not sure if we discussed these b4
"selma"
No, there is no patch or dimple which made me reluctant to mention it to the doc. I didn't know til recently that there are other things like ray mentioned ( sorry if I'm putting everything under one heading of SB- not yet up to speed on lingo/related possibilities).
I had gone on a SB support group years ago and thought to myself, ' this doesn't fit because there is no patch or protrusion or anything" - I didn't give it much thought after that even when the forum I had joined kept sending me 'where are you' emails. I did ask the geneticist as mentioned but didn't even bring it up to the new GI ( again...thought she would think I was 'stretching") She was the one who brought it up. She said the doc in calgary ( foothills) wanted an MRI and I asked her if it was to do with tethered cord - and she said yes. Was then I thought maybe my initial thinking wasn't so off-base and now realize there are so many differnt things that can happen along the spine - I really don't understand any of them very well at this point but just know that there can be a connection with gi problems.
You have to understand that I have been 'playing ' doctor here for many years and have been trying to narrow things down, find possibilities etc...and i haven't gotten much support... the ( old) docs have gotten a little frustrated with me ( at least that's the impression I got) because I want answers, not just another laxative! It's very scarey to have to give your child fleet ( or pico-salax should I say)every week just so he can go to the bathroom! It gets scarier every time, for him especially of course, but for me also because I know this isn't good. Shouldn't even be used for short-termed remedy!
But...I know our son's spine did have slight curvature years ago - the doc at the time said it wasn't anything. New GI hasn't mentioned anything along that line to me at this time. As I mentioned my son is very tall - his spine to me, looks very 'indented' at the lower part...if that makes sense. I know my spine isn't that curve in...nor is our daughters...just an observation...don't know if it means anything or not.
gotta go feed the young lad now - nourishment or poison - I never know - but he has to eat. Thanx again...suzanne
ps: ( sorry!)...just had to add...something that I've not thought about for years. When our son was younger he wet his bed for years - had to do the plastic on the bed thing, get him up at 11 pm to pee - sometimes helped ( very common I know). Eventually he grew out of that to some extent but has always 'RUN' to the bathroom to pee...years ago he's just pee in the yard when he couldn't make it inside ( good thing we have a big yard and had few neighbors then!)...he still rushes to pee - had never given it much thought as it seems so insignificant to the other issues. Guess I've just gotten used to him 'running' to the bathroom to pee and haven't thought it odd ( I just get outta his way!) - funny the things you get used to. Should probably let the docs know that at foothills.
I had gone on a SB support group years ago and thought to myself, ' this doesn't fit because there is no patch or protrusion or anything" - I didn't give it much thought after that even when the forum I had joined kept sending me 'where are you' emails. I did ask the geneticist as mentioned but didn't even bring it up to the new GI ( again...thought she would think I was 'stretching") She was the one who brought it up. She said the doc in calgary ( foothills) wanted an MRI and I asked her if it was to do with tethered cord - and she said yes. Was then I thought maybe my initial thinking wasn't so off-base and now realize there are so many differnt things that can happen along the spine - I really don't understand any of them very well at this point but just know that there can be a connection with gi problems.
You have to understand that I have been 'playing ' doctor here for many years and have been trying to narrow things down, find possibilities etc...and i haven't gotten much support... the ( old) docs have gotten a little frustrated with me ( at least that's the impression I got) because I want answers, not just another laxative! It's very scarey to have to give your child fleet ( or pico-salax should I say)every week just so he can go to the bathroom! It gets scarier every time, for him especially of course, but for me also because I know this isn't good. Shouldn't even be used for short-termed remedy!
But...I know our son's spine did have slight curvature years ago - the doc at the time said it wasn't anything. New GI hasn't mentioned anything along that line to me at this time. As I mentioned my son is very tall - his spine to me, looks very 'indented' at the lower part...if that makes sense. I know my spine isn't that curve in...nor is our daughters...just an observation...don't know if it means anything or not.
gotta go feed the young lad now - nourishment or poison - I never know - but he has to eat. Thanx again...suzanne
ps: ( sorry!)...just had to add...something that I've not thought about for years. When our son was younger he wet his bed for years - had to do the plastic on the bed thing, get him up at 11 pm to pee - sometimes helped ( very common I know). Eventually he grew out of that to some extent but has always 'RUN' to the bathroom to pee...years ago he's just pee in the yard when he couldn't make it inside ( good thing we have a big yard and had few neighbors then!)...he still rushes to pee - had never given it much thought as it seems so insignificant to the other issues. Guess I've just gotten used to him 'running' to the bathroom to pee and haven't thought it odd ( I just get outta his way!) - funny the things you get used to. Should probably let the docs know that at foothills.
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