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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.
DS...dear son? Again, mine... darlin' son...but same initials.
I willl do what I can - if it means emailing the NS I will...I will also email the GI who we are going to see. Better he gets the 'history' /medical details beforehand so he doesn't have to bother with that at the appt...appreciate you keeping us in your prayers - it helps...thanx...suzanne
I willl do what I can - if it means emailing the NS I will...I will also email the GI who we are going to see. Better he gets the 'history' /medical details beforehand so he doesn't have to bother with that at the appt...appreciate you keeping us in your prayers - it helps...thanx...suzanne
COMMUNITY LEADER
Suzanne, I must say it can not hurt, but it can help...I found we have to be our own advocates and since it is ur DS that has the medical issues as a mom, u r doing great being his advocate. Gone r the days where medical insurance covered everything and u knew u were getting the best care......the drs r far too over booked and have no idea what is wrong nor the time to research...so it is best we have an idea of what is going on...it helps when they give a dx....at least it sounds familiar....lol....
I am keeping u all in my prayers
"selma"
I am keeping u all in my prayers
"selma"
No date yet - phoned but had to leave a message and she hasn't phoned back yet. The first person I phoned ( who told me to phone the bookings person) did say that our son is slated for a rectal manometry and we can expect to be there a couple of days. No mention of another hirschspungs biopsy so will ask about that when I get a call back.
I was thinking of emailing the NS ( see how good I am on abbreviations now?! ha!) at the hospital and ask if he would be reading the MRI - if I mention the possible 'family connection' it may get his interest...just trying to cover all bases as it seems so much time has been wasted already. Sorta like job-hunting...gotta network. Can't hurt can it?...suzanne
I was thinking of emailing the NS ( see how good I am on abbreviations now?! ha!) at the hospital and ask if he would be reading the MRI - if I mention the possible 'family connection' it may get his interest...just trying to cover all bases as it seems so much time has been wasted already. Sorta like job-hunting...gotta network. Can't hurt can it?...suzanne
COMMUNITY LEADER
HI...sorry I messed u up with the abbreviations.....and then missed the next post.....but we do have a page in the Health Pages that lists most of the abbrev we do use to simplify the typing.......
I have to try and remeber to spell it out for the newbies, but with chairi I do tend to forget...sorry
"selma"
I have to try and remeber to spell it out for the newbies, but with chairi I do tend to forget...sorry
"selma"
Ray...I was being dense! CM - of course chiari! The DD I assumed was darlin' daughter as that is what I call mine.
I think I'm going to have to do alot more research on the various problems that can occur ie: sphinx, cysts etc not just tethered cord. All that is on the MRI requisition is 'tethered cord' and 'occulta' which means at this point ( unless I can get it changed) that the test will only look for that and could be another wild goose chase if something else is involved.
Barb...that is unbelievable that everyone said all was normal when clearly there was stark evidence! As i mentioned before, where do some of these docs get their degree?
It's very maddening when a doc sends you home with the 'all thumbs up' and you know that it isn't the case - but what do you do. In my experience a doc with that attitude can't be changed - kinda like a racist. You just have to find another which takes alot of time and much 'history' gets lost in the meantime...not to mention the toll it takes on the child! I've been afraid to ask for certain tests or bring up my suspicions in the past - especially to our son's ex-pediatrician. Everything I brought up he laughed at and said I was overreacting. He blamed everything on the fact that one time when our son was in hospital for impaction, I took him home early - he said he was never properly cleaned out - said that was the problem. It wasn't. The nurse had miscalculated the length of tube needed to go down my sons throat to his stomach to administer the laxative - when she turned the pump on it pumped directly into his esophogus and he could have drowned. I was there of course and turned the pump off - nurse wouldn't admit she cut the tube too short and argued with me. My son stayed there took the laxative orally and did completely get cleaned out - just not all at the hospital. Just another bad doc story - as mentioned ex-doc.
No, no spinal xrays have ever been done - lots of colon xrays but thats all. This is naive but I kinda thought that if there was a spinal problem it would show up on one of those xrays as you can see the spine, albeit not very clearly.
Anyhow, I'd better get on the phone and see if I can get a date on when we have to go to calgary - then the hospital here to see how long the wait list for mri ( I have our son on the wait list just in case - could be a cancelation before appt in calgary - never know - otherwise we'll pay for it)...and also have to phone about the scope of the MRI - some or all of the spine.
Thanx again so much for listening - things are making sense now - just have to wait.
bye for now...suzanne
I think I'm going to have to do alot more research on the various problems that can occur ie: sphinx, cysts etc not just tethered cord. All that is on the MRI requisition is 'tethered cord' and 'occulta' which means at this point ( unless I can get it changed) that the test will only look for that and could be another wild goose chase if something else is involved.
Barb...that is unbelievable that everyone said all was normal when clearly there was stark evidence! As i mentioned before, where do some of these docs get their degree?
It's very maddening when a doc sends you home with the 'all thumbs up' and you know that it isn't the case - but what do you do. In my experience a doc with that attitude can't be changed - kinda like a racist. You just have to find another which takes alot of time and much 'history' gets lost in the meantime...not to mention the toll it takes on the child! I've been afraid to ask for certain tests or bring up my suspicions in the past - especially to our son's ex-pediatrician. Everything I brought up he laughed at and said I was overreacting. He blamed everything on the fact that one time when our son was in hospital for impaction, I took him home early - he said he was never properly cleaned out - said that was the problem. It wasn't. The nurse had miscalculated the length of tube needed to go down my sons throat to his stomach to administer the laxative - when she turned the pump on it pumped directly into his esophogus and he could have drowned. I was there of course and turned the pump off - nurse wouldn't admit she cut the tube too short and argued with me. My son stayed there took the laxative orally and did completely get cleaned out - just not all at the hospital. Just another bad doc story - as mentioned ex-doc.
No, no spinal xrays have ever been done - lots of colon xrays but thats all. This is naive but I kinda thought that if there was a spinal problem it would show up on one of those xrays as you can see the spine, albeit not very clearly.
Anyhow, I'd better get on the phone and see if I can get a date on when we have to go to calgary - then the hospital here to see how long the wait list for mri ( I have our son on the wait list just in case - could be a cancelation before appt in calgary - never know - otherwise we'll pay for it)...and also have to phone about the scope of the MRI - some or all of the spine.
Thanx again so much for listening - things are making sense now - just have to wait.
bye for now...suzanne
Hi Suzanne,
your story sounds very familiar to what we went through with our older boy. He did not potty train, his bowels for as long as I can remember did not work well, on malt soup extract from about 6mo age for constipation. His leg pains became worse and worse, and the docs said they were growing pains. But this was all due to his tethered cord. The nerves from his waist down were being restricted and stretched from the fatty tumor that was there which was causing all of these problems. I fought and fought for answers, but it fell on def ears.My son did have a marker on the outside, it was a small hemangioma near his rectum that bled everytime he had a bowel movement so we had to put him in the tub to clean him after each bowel movement so we would not agravate the hemangioma. As he got older the hemangioma changed, and he developed an area on his butt that looked like it had no pigment, and his butt crack looked like a half moon. Still the docs thought all was fine.
We had one urologist tell us he was anatomically correct and wanted us to start a bathroom regimen for bladder and bowel.
The second urologist took one look at his back side and could not believe that knowone questioned what was there. He of course was familiar with tethered cord, and dealt with there incontinence issues.
This is why it is so important to get a doc that is a specialist in tethered cord and spina bifida. Has your son had a regular xray of his lower spine? This was the first thing the doc did after finally agreeing there was something going on, and it showed that he was missing the 3 lower segments of his sacral spine on his left side. This is when she ordered his MRI.
I would not be so quick to get the Colostomy bag until you find out if he is tethered or not.
NOw I am ranting. Sorry, I just feel your pain, and I know how hard this is on you too, as well as your whole family.
Many prayers your way
Barb:)
your story sounds very familiar to what we went through with our older boy. He did not potty train, his bowels for as long as I can remember did not work well, on malt soup extract from about 6mo age for constipation. His leg pains became worse and worse, and the docs said they were growing pains. But this was all due to his tethered cord. The nerves from his waist down were being restricted and stretched from the fatty tumor that was there which was causing all of these problems. I fought and fought for answers, but it fell on def ears.My son did have a marker on the outside, it was a small hemangioma near his rectum that bled everytime he had a bowel movement so we had to put him in the tub to clean him after each bowel movement so we would not agravate the hemangioma. As he got older the hemangioma changed, and he developed an area on his butt that looked like it had no pigment, and his butt crack looked like a half moon. Still the docs thought all was fine.
We had one urologist tell us he was anatomically correct and wanted us to start a bathroom regimen for bladder and bowel.
The second urologist took one look at his back side and could not believe that knowone questioned what was there. He of course was familiar with tethered cord, and dealt with there incontinence issues.
This is why it is so important to get a doc that is a specialist in tethered cord and spina bifida. Has your son had a regular xray of his lower spine? This was the first thing the doc did after finally agreeing there was something going on, and it showed that he was missing the 3 lower segments of his sacral spine on his left side. This is when she ordered his MRI.
I would not be so quick to get the Colostomy bag until you find out if he is tethered or not.
NOw I am ranting. Sorry, I just feel your pain, and I know how hard this is on you too, as well as your whole family.
Many prayers your way
Barb:)
Hi Suzanne, No worries CM Chiari Malformation, DD Dear Daughter
I have Chiari at 4mm, my NS said it is due to an congenital Intradural Cyst called a neurenteric cyst. I also have 4 fused vertebra. My cord is compressed, I also have a Syrinx all this at the cervical/thoracic junction. I am 45 years old and have had many symptoms but could never figure out what was going on, it was when I started having balance issues two years ago and had some abnormal test results that the doctors started to listen and sent me for an MRI scan. I am over 6 feet tall so it did not have a baring on my development. I have problems with my bladder as well mostly hesitance. this the NS feels is due to interrupting of the Neuro pathways in the spinal cord because of the syrinx witch has developed slowly over the years....
Ray
I have Chiari at 4mm, my NS said it is due to an congenital Intradural Cyst called a neurenteric cyst. I also have 4 fused vertebra. My cord is compressed, I also have a Syrinx all this at the cervical/thoracic junction. I am 45 years old and have had many symptoms but could never figure out what was going on, it was when I started having balance issues two years ago and had some abnormal test results that the doctors started to listen and sent me for an MRI scan. I am over 6 feet tall so it did not have a baring on my development. I have problems with my bladder as well mostly hesitance. this the NS feels is due to interrupting of the Neuro pathways in the spinal cord because of the syrinx witch has developed slowly over the years....
Ray
CM? Am I being dense or just still don't know the abbr's?
I need to ask my son about the pain he has - trouble is the pain ( I think) has been largely eradicated/or gotten used to to school anymore ( doesn't walk - doesn't do anything - we used to walk every day but he's gotten to the point where even that is a struggle). I know I have to keep him active somehow but its hard. We used to snow-ski all the time, do all kinds of stuff together in the summer...but the incontinence always put limits on what we could do ( or for how long). I rememer the days when he was young and we skiied together - always had to go in to the lodge to check if he had had an accident - and I always had a 'plan b' for those instances - but at least he was able to do stuff then...now...it's just 'games' when his friends come over. And believe me, I'm sooo grateful for his friends....they come over on weekends quite often.
The GI asked our son whether everything worked sexually ( masturbating - he's not sexually active of course as he is pretty much confined to home). It was difficult for her to ask and harder I'm sure for our son to answer as my husband and I were in the room. We offered to leave but she seemed satisfied with his answer that all worked well in that area ( it was a very short question and one that I think she felt left to the next specialist under the circumstances). I have always wondered it things work ok but have never asked him about it. My husband works out of town and although they have a close relationship, it's not something he has brought up either - no reason til now.
But one thing is ...when he was young...there was a problem that he noticed and I asked my husband to 'look at'...his one testicle was completely gone! Descended into the groin! I did ask the doc about it but can't remember what was said - our son was too 'old' for me to check and I've never been able to again of course....so that is an area where I think we need the docs to ask more questions ( our son doesn't know what is 'normal' and there could be a problem there)...just another area for me to be worried about/looking at.
Anyhow, bye for now...and thank-you again - it's a hard time right now and your support means a great deal.
If the 'text' in this post doesn't seem to make sense its because I was trying to correct text and for some reason the program was deleting letters - likely my computer...not sure why...
suzanne
I need to ask my son about the pain he has - trouble is the pain ( I think) has been largely eradicated/or gotten used to to school anymore ( doesn't walk - doesn't do anything - we used to walk every day but he's gotten to the point where even that is a struggle). I know I have to keep him active somehow but its hard. We used to snow-ski all the time, do all kinds of stuff together in the summer...but the incontinence always put limits on what we could do ( or for how long). I rememer the days when he was young and we skiied together - always had to go in to the lodge to check if he had had an accident - and I always had a 'plan b' for those instances - but at least he was able to do stuff then...now...it's just 'games' when his friends come over. And believe me, I'm sooo grateful for his friends....they come over on weekends quite often.
The GI asked our son whether everything worked sexually ( masturbating - he's not sexually active of course as he is pretty much confined to home). It was difficult for her to ask and harder I'm sure for our son to answer as my husband and I were in the room. We offered to leave but she seemed satisfied with his answer that all worked well in that area ( it was a very short question and one that I think she felt left to the next specialist under the circumstances). I have always wondered it things work ok but have never asked him about it. My husband works out of town and although they have a close relationship, it's not something he has brought up either - no reason til now.
But one thing is ...when he was young...there was a problem that he noticed and I asked my husband to 'look at'...his one testicle was completely gone! Descended into the groin! I did ask the doc about it but can't remember what was said - our son was too 'old' for me to check and I've never been able to again of course....so that is an area where I think we need the docs to ask more questions ( our son doesn't know what is 'normal' and there could be a problem there)...just another area for me to be worried about/looking at.
Anyhow, bye for now...and thank-you again - it's a hard time right now and your support means a great deal.
If the 'text' in this post doesn't seem to make sense its because I was trying to correct text and for some reason the program was deleting letters - likely my computer...not sure why...
suzanne
COMMUNITY LEADER
...that rushing sounds like my DD when she was young....and she used to tell me she didn't feel the need to go until it felt like she wouldn't make it.
That is a common issue with CM and TC and I had a problem with it as well...but instead of having to rush I got awful pains in my back straight up my spine...I could barley stand up straight.....now I have the sensation back, but if I wait even a little I get very warm....the dr told me it was a bladder dysfunction bcuz of the TC....so there r many ways u can have the problem and it can change over time too.
There r I am sure many other issues with the spine we have not even broached here.
Well one thing for sure we continue to learn more everyday : )
"selma"
That is a common issue with CM and TC and I had a problem with it as well...but instead of having to rush I got awful pains in my back straight up my spine...I could barley stand up straight.....now I have the sensation back, but if I wait even a little I get very warm....the dr told me it was a bladder dysfunction bcuz of the TC....so there r many ways u can have the problem and it can change over time too.
There r I am sure many other issues with the spine we have not even broached here.
Well one thing for sure we continue to learn more everyday : )
"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.
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"
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
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"
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
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"
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
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 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
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 :)
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
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
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"
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,
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"
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