Guest guest Posted December 7, 2008 Report Share Posted December 7, 2008 Hi, My 4 year old daughter was born with congenital scoliosis (32 degree curve), chest defect and small heart defect. She was born at 37 weeks, weighing 5 lbs and only weighs 22lbs now at age 4. She's tiny. She also has other mild odd things including a butt dimple over her bum crack. She had an MRI at 15 months that showed a fatty filum but told that it was nothing to worry about. She's never had normal bowel movements but starting at 20 months old she had major constipation. She would go every week to 3 weeks without a bowel movement. Starting in August of this year she's had continuous uti's, 7 of them. She was fully potty trained by age 3 but totally started regressing at 3 1/2. They just placed a cecostomy tube to help with constipation. While in the hospital the drs started questioning if she could have a tethered cord. We are meeting with a NS this month as well as having a repeat MRI. Her latest thing since her cecostomy is leg numbness. I'm not sure if this goes along with TC but it's concerning. Any input would be great. Thanks, Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Those are all signs of TSC... my daughter has lipomyelomeningocele and she has a fatty mass above her butt, the dimple that you speak of is also a sign of the myelomeningocele... I would definately get it checked! Other noticeable signs are a patch of hair or a " birth mark " on the lower back. The lower extremeties are normally affected if it is tethred that low. Good luck! Subject: New Here To: tetheredspinalcord Date: Sunday, December 7, 2008, 5:57 PM Hi, My 4 year old daughter was born with congenital scoliosis (32 degree curve), chest defect and small heart defect. She was born at 37 weeks, weighing 5 lbs and only weighs 22lbs now at age 4. She's tiny. She also has other mild odd things including a butt dimple over her bum crack. She had an MRI at 15 months that showed a fatty filum but told that it was nothing to worry about. She's never had normal bowel movements but starting at 20 months old she had major constipation. She would go every week to 3 weeks without a bowel movement. Starting in August of this year she's had continuous uti's, 7 of them. She was fully potty trained by age 3 but totally started regressing at 3 1/2. They just placed a cecostomy tube to help with constipation. While in the hospital the drs started questioning if she could have a tethered cord. We are meeting with a NS this month as well as having a repeat MRI. Her latest thing since her cecostomy is leg numbness. I'm not sure if this goes along with TC but it's concerning. Any input would be great. Thanks, Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Tammy, I agree, all signs of TC. I would think that no one would think a thickened filum to be nothing to worry about (especially when a dimple and bowel issues were with it) but therein lies the problem....so many docs do not understand the significance or consequences of TC. Hopefully this new doc will have more knowledge and get you and your daughter taken care of properly...if they say nothing to worry about...find a new doc that is specialized in TC, just because they are a Neurosurgeon does not mean they are specialized in TC. I do not know, I am not a doc but I would think that she may require surgery. I'm sorry, I know that is scary but it may prevent further neurological damage and even though the rule of thumb is that you shouldnt expect surgery to " fix " anything currently going on, it is used to prevent further damage, at her age you never know....the body is wonderful at repairing itself and maybe it would help at least the leg numbness as it is a newer symptom. If she does need surgery then make sure you have a Neurosurgeon that has done many many TC surgeries. Just come out and ask them numbers, seriously. You will have to be a strong advocate for your daughter and will most likely wind up knowing more about TC than most docs. Thankfully you have a computer which is a Godsend for research. I am so sorry that you and your daughter are going through this. There is a forum especially for parents of kids with TC...I dont know the address but hopefully someone will post it for you. Stay Strong. Blessings, From: ttoy25 <ttoy25yahoo (DOT) com> Subject: New Here To: tetheredspinalcord@ yahoogroups. com Date: Sunday, December 7, 2008, 5:57 PM Hi, My 4 year old daughter was born with congenital scoliosis (32 degree curve), chest defect and small heart defect. She was born at 37 weeks, weighing 5 lbs and only weighs 22lbs now at age 4. She's tiny. She also has other mild odd things including a butt dimple over her bum crack. She had an MRI at 15 months that showed a fatty filum but told that it was nothing to worry about. She's never had normal bowel movements but starting at 20 months old she had major constipation. She would go every week to 3 weeks without a bowel movement. Starting in August of this year she's had continuous uti's, 7 of them. She was fully potty trained by age 3 but totally started regressing at 3 1/2. They just placed a cecostomy tube to help with constipation. While in the hospital the drs started questioning if she could have a tethered cord. We are meeting with a NS this month as well as having a repeat MRI. Her latest thing since her cecostomy is leg numbness. I'm not sure if this goes along with TC but it's concerning. Any input would be great. Thanks, Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 In a message dated 12/7/2008 5:57:40 P.M. Eastern Standard Time, ttoy25@... writes: She had an MRI at 15 months that showed a fatty filum but told that it was nothing to worry about. She's never had normal bowel movements but starting at 20 months old she had major constipation. She would go every week to 3 weeks without a bowel movement. Starting in August of this year she's had continuous uti's, 7 of them. She was fully potty trained by age 3 but totally started regressing at 3 1/2. They just placed a cecostomy tube to help with constipation. While in the hospital the drs started questioning if she could have a tethered cord. We are meeting with a NS this month as well as having a repeat MRI. Her latest thing since her cecostomy is leg numbness. I'm not sure if this goes along with TC but it's concerning. Hi Tammy, nice to see you here too, although not glad you have to deal with this in addition to the scoli issues... Grrr, smack the docs, since a fatty filum IS a tethered cord, ugh... Or at least, it is one thing that can tether a cord and prevent it from moving freely. I bet you if THEIR child had a fatty filum on MRI, they wouldn't be thinking it was nothing to worry about. If they didn't surgically release it right away, they'd be watching like a hawk for symptoms (hmm, constipation, utis, numbness in feet and legs, sound familiar?) and jumping on them when they showed up... had a fatty filum, and it definitely caused problems, and has been released twice - once at 4 months of age, and again when he had his spinal fusion at 6. Good luck with your NS meeting. Connie Mom to Sara 17, Nicky 10 (GI issues, megacolon), and 8 (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal fistula imperforate anus (repaired 5/00, managed with daily Exlax), single kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06), 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) tibial torsion 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@... Our website: _http://members.tripod.com/conni60640-ivil/_ (http://members.tripod.com/conni60640-ivil/) VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_ (http://health.groups.yahoo.com/group/VACTERLNetwork/) 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/) Anorectal malformations support - The Pull-Thru Network _http://www.pullthrunetwork.org/index.php_ (http://www.pullthrunetwork.org/index.php) S. Jersey **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215195222x1200993641/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=82%26bcd=De cemailfooterNO82) Quote Link to comment Share on other sites More sharing options...
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