Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 I have not posted yet, we are so busy right now. My two year old was just diagnosed with TC and is having surgery Friday at Duke with Dr. . He has a fatty filum that will be clipped. We found it on an MRI ordered because he has a shallow dimple, hemivertebrea, and a cleft palate that has been repaired. One thing I have learned in my research and from a support parent whose daughter has very significant Chiari is that a tethered cord can LEAD to Chiari. Which maybe why you are not more significant and that the surgery has not helped. The MRI should definitely find the tether if indeed you have one. I don't know about the heredity part. My brother is 35 he was born with a sacral dimple and has scoliosis. He has had bouts of headaches with throwing up and his head MRI was negative. I am wondering if he should have a spinal MRI done. I don't have any advice about adults, I do know with children surgery is considered imperative. I think it is more subjective with adults. I really appreciate all I have learned here, even though I did not realize this was mostly for adults. Thanks for letting me lurk and learn. If anyone is the type to pray I would appreciate it. I am more nervous about this surgery than I was for his first three. In a message dated 2/14/2006 4:55:41 PM Eastern Standard Time, amandamariebaker@... writes: Anyway, back to my original point. My headache is STILL constant. I have an appt next week to see my doctor for an evaluation. He has ordered an xray, lumbar mri (no contrast) and brain mri (no contrast). What I want to know is: Are these tests useful in detecting TCS? Is it possible to have such a mild case that I've made it this far without being more incapacitated? Can this cause lower back pain? Can it cause a constant headache? Is it hereditary? What's the rate of success with surgery? Assuming I am not diagnosed, what other conditions might cause lower back pain and a constant headache? It may be my imagination but, I seem to see more and more chiari patients getting diagnosed with this. I know it sounds strange but, I HOPE I get diagnosed. Thanks for any advice. in land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 amandamariebaker wrote: >Hello everyone, > >I decided to sign up after receiving an email from my doctor saying >I should be tested for tethered cord syndrome. First, a little >background... >I am 35 years old and diagnosed with chiari I (borderline case) and >PTC. I have been decompressed and also have a VP shunt (both >surgeries in 2004). Since age 28, my headache has been constant >(unless medicated). I was diagnosed by Dr. Bolognese and Dr. >Milhorat at the Chiari Institute in NY (no one else COULD diagnose >me because my case was so " borderline " ....but, let me just say that >what they call borderline sure doesn't FEEL borderline!). If anyone >is curious, you can see my brain mri at www.chiarione.org (0mm case >with blocked csf flow). >As I'm sure you can imagine, I was hugely disappointed when I STILL >had a constant headache - even after these two surgeries. My doctor >truly believed the shunt would make me feel like a " million bucks " . >And, I did too. But, I still have the same pain. >One month after my shunt was placed, I got pregnant. Headaches got >alot worse. But, then there was something else.... >During my pregnancy, I tested positive TWICE for neural tube defects >in my baby. I had several ultrasounds done and all were normal. >Thank God, he was born healthy. But, 3 days after bringing my son >home, I noticed he had a very significant dimple (a little hairy >too) at the end of his spine (just above his buttcrack - for lack of >a better word :-). Remembering the NTD tests, I took him >immediately for a sonogram...and again, all was normal. Still >concerned, I decided to research spina bifida. What I found >reminded me of a few things I had forgotten about myself... >I was born with a red birthmark on my lower back...in the exact same >spot my son has this dimple. I do not know if I had a dimple or >not. Today, I have a strange rounded " fleshy " spot there. To the >inexperienced eye, this doesn't look like a deformity of anykind. >But, I've always thought it was a little odd. Finally, I've always >had this slight " pinched " feeling there...deep inside...like nerve >or muscle is pinched between bones or something. But, it's been >almost unnoticeable until recently....it's been very noticeable in >the last two months. I guess because I'm carrying a 16 lb infant >around. >Anyway, back to my original point. My headache is STILL constant. >I have an appt next week to see my doctor for an evaluation. He has >ordered an xray, lumbar mri (no contrast) and brain mri (no >contrast). What I want to know is: >Are these tests useful in detecting TCS? > > A MRI is one of the better tools available to diagnose TSC With out contrast might work, if not then they might order a MRI with contrast. A myelogram is another useful tool which is contrast in the dura then xrays to show where the contrast does NOT flow >Is it possible to have such a mild case that I've made it this far >without being more incapacitated? > > yes >Can this cause lower back pain? > > yes >Can it cause a constant headache? > > in my experience, they remove a little csf (cerebral spinal fluid), then add the contrast. the headaches occur when the contrast is dissipated faster than the csf is naturally replaced there is sort of a vacuum that pulls down on your brain that causes the headaches >Is it hereditary? > > they dont know - for sure. there are many documented cases of TCS and NTDs in multiple family members. Duke U is currently doing a NTD study that includes the question of heredity. >What's the rate of success with surgery? > > 0-99.99% - depends on doctor skill and nature of 'defect' operated on >Assuming I am not diagnosed, what other conditions might cause lower >back pain and a constant headache? > > is your spinal column structurally sound? bone spurs? osteoporosis? proper alignment? overweight? >It may be my imagination but, I seem to see more and more chiari >patients getting diagnosed with this. I know it sounds strange but, >I HOPE I get diagnosed. > >Thanks for any advice. > in land > > Good Luck and Happy Valentines Day to ALL Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 In a message dated 2/15/2006 9:30:01 AM Eastern Standard Time, charneloj@... writes: > > > I have not posted yet, we are so busy right now. My two year old was just diagnosed with TC and is having surgery Friday at Duke with Dr. . He has a fatty filum that will be clipped. We found it on an MRI ordered because he has a shallow dimple, hemivertebrea, and a cleft palate that has been repaired. You might want to look into something called VATER syndrome for your child. I am not too familiar with the issue but it affects midline issues and from what you have posted it might pertain to your child. My son has VACTERLS (more expanded name of VATER now being widely used) along with features of Caudal Regression syndrome. He did not have a dimple, but a red birthmark on his sacral spine area, and has a hemivertebra, along with a hemisacrum. (There is a link in my signature for a support group for congenital spine problems if you are interested...). If you have any questions related to this, feel free to ask. Connie Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5 (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula imperforate anus (repaired 5/00), single kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most beautiful smile ever) conni60640@..., _http://members.tripod.com/conni60640-ivil/_ (http://members.tripod.com/conni60640-ivil/) TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_ (http://health.groups.yahoo.com/group/LMC-TCS/) Congenital scoliosis support group _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_ (http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) S. Jersey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 In a message dated 2/14/2006 4:57:20 PM Eastern Standard Time, amandamariebaker@... writes: But, 3 days after bringing my son home, I noticed he had a very significant dimple (a little hairy too) at the end of his spine (just above his buttcrack - for lack of a better word :-). Remembering the NTD tests, I took him immediately for a sonogram...and again, all was normal. Still concerned , I wish I had some advice for you, but I don't.... I am curious if you ever followed up on your son's dimple with an MRI to more conclusively rule out a TC? I know that ultrasounds CAN rule IN a TC soon after birth, but it's hard to rule it out, since so much is dependent on the skill of the person doing it... Connie Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5 (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula imperforate anus (repaired 5/00), single kidney, PDA (closed on its own), mal formed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most beautiful smile ever) conni60640@..., _http://members.tripod.com/conni60640-ivil/_ (http://members.tripod.com/conni60640-ivil/) TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_ (http://health.groups.yahoo.com/group/LMC-TCS/) Congenital scoliosis support group _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_ (http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) S. Jersey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 In a message dated 2/14/2006 4:57:20 PM Eastern Standard Time, amandamariebaker@... writes: I was born with a red birthmark on my lower back...in the exact same spot my son has this dimple. I do not know if I had a dimple or not. Today, I have a strange rounded " fleshy " spot there. To the inexperienced eye, this doesn't look like a deformity of anykind. But, I've always thought it was a little odd. Also, I don't know about the birthmark on that area, but I do have the rounded fleshy spot there, which is a bit fuzzy... I did have an xray to check for underlying bony abnormalities but it was normal, never had an MRI done, though. I've never asked our doc if it was abnormal though... if you get an answer on that I'd be interested in hearing it. I don't have any " real " TC symptoms though, although I do have B & B issues with IBS and interstitial cystitis, and my one leg falls asleep pretty fast :S My son has a fatty filum tether along with VACTERLS association... I also do know of a family that three or four of their children had a tethered cord... no chiari that I know of though... Connie Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5 (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula imperforate anus (repaired 5/00), single kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most beautiful smile ever) conni60640@..., _http://members.tripod.com/conni60640-ivil/_ (http://members.tripod.com/conni60640-ivil/) TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_ (http://health.groups.yahoo.com/group/LMC-TCS/) Congenital scoliosis support group _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_ (http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) S. Jersey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Hi I thought I would post to the group about this subject. The post that Debbie posted was from one I did on WACMA (a site for chiari pts). There are a few statments in this response I wanted to comment on. Please do not be offended if I disagree with you who posted it is just that the feild is everchanging and info becomes outdated. Second I wanted to reply to original poster too. > > > I have not posted yet, we are so busy right now. My two year old was just diagnosed with TC and is having surgery Friday at Duke with Dr. . He has a fatty filum that will be clipped. We found it on an MRI ordered because he has a shallow dimple, hemivertebrea, and a cleft palate that has been repaired. You might want to look into something called VATER syndrome for your child. I am not too familiar with the issue but it affects midline issues and from what you have posted it might pertain to your child. > > One thing I have learned in my research and from a support parent whose daughter has very significant Chiari is that a tethered cord can LEAD to Chiari. This was once thought to be true. Tethered cord cannot " cause " the malformation but it can lead to onset of symptoms and and also make them worse. For example. I have three children that have both chiari I and tethered cord. I too also have both issues. I have been boderline in tethered cord and chiari symptoms all my life. It was mostly when I would grow that I had problems until a series of head injuries triggered significant chiari symptoms. The tethered cord remained a borderline condition that showed mainly when I did a lot of lifting until my decompression amd craniocervical fusion in 2004. The fusion added tension to the spine triggering the tethered cord. My children were all opposite. They had severe tethered cord symptoms from birth and were all detethered. My oldest has minor chiari issues with choking and headaches. The detethering surgery helped her and for the most part stopped her symptoms. My middle child has more severe chiari issues. Post op for her detethering she had worsening chiari issues and is currently under treatment for high icp. My youngest has little to no chiari symptoms. He was detethered and about 9mos post op started developing chiari issues. It would be more accurate to say that chairi and tethered cord are seen together and can cause compilactions to one another not, that one causes the other. > Which maybe why you are not more significant and that the surgery has not > helped. The MRI should definitely find the tether if indeed you have one. MRIs for tethered cord are not difinitive with filum tethering. They are just the most accurate way to indicate fi there is an issue other than surgery and microscopic evaluation. In the subclassification of tethered cord that is talked about in the post Debbie fowarded the only way to see it on MRI is with the CINE program run. I had three MRI on my lumbar region before they saw the tethering. My conus and filum look normal. It is only with movement eval that an issue is seen. >I don't know about the heredity part. Yes it looks like chiari and tethered cord can be herditary in some families. Email me off list and I can give you contact info for the duke studies for each if you are interested in participating in either. > In a message dated 2/14/2006 4:55:41 PM Eastern Standard Time, > amandamariebaker@... writes: Welcome ! > Are these tests useful in detecting TCS? I would still ask that the MRI be done CINE in case you are one of the hard to dx cases... > Is it possible to have such a mild case that I've made it this far >without being more incapacitated? Yes. There are people who have what is sometimes refere to as " aquired tethered cord " Those are people who are borderline and something triggers symptoms to get worse. > Can this cause lower back pain? OH yes it can! > Can it cause a constant headache? This is less comoonly seen and I think something that would indicate chiari is also present. I may be wrong on this but I think tight or fatty filum doesn't cause headaches unless there is a comorbid condition like chiari. > Is it hereditary? See above. > What's the rate of success with surgery? That is someting that would be individual to the doc. What we have when you combine the two is so rare that it is hard to determine. > Assuming I am not diagnosed, what other conditions might cause > lower back pain and a constant headache? I don't know of any... > It may be my imagination but, I seem to see more and more chiari > patients getting diagnosed with this. The field of chiari,eds, andtethered cord is growing and expanding. As the docs learn you will see expanding parameters. Part of what you are seeing on the WACMA list is the TCI docs at work. I hope this helps and that I haven't been too long winded. Charnel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 WOW! I had a red birthmark on my sacral spine area when I was born! Strange this is, I also had a read birthmark on my neck (where my adam's apple would be if I were a guy). Both faded by the time I was about 12 years old.... > > > > > > I have not posted yet, we are so busy right now. My two year old > was just diagnosed with TC and is having surgery Friday at Duke with > Dr. . He has a fatty filum that will be clipped. We found it > on an MRI ordered because he has a shallow dimple, hemivertebrea, and > a cleft palate that has been repaired. > > You might want to look into something called VATER syndrome for your > child. I am not too familiar with the issue but it affects midline > issues and from what you have posted it might pertain to your child. > > > > My son has VACTERLS (more expanded name of VATER now being widely > used) along with features of Caudal Regression syndrome. He did not have a > dimple, but a red birthmark on his sacral spine area, and has a hemivertebra, > along with a hemisacrum. (There is a link in my signature for a support group > for congenital spine problems if you are interested...). If you have any > questions related to this, feel free to ask. > > Connie > Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5 > (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula > imperforate anus (repaired 5/00), single kidney, PDA (closed on its own), > malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with > hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs > 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) > and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, > DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most beautiful > smile ever) > conni60640@..., _http://members.tripod.com/conni60640-ivil/_ > (http://members.tripod.com/conni60640-ivil/) > > TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_ > (http://health.groups.yahoo.com/group/LMC-TCS/) > > Congenital scoliosis support group > _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_ > (http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) > > S. Jersey > > > > Quote Link to comment Share on other sites More sharing options...
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