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Living with Congenital Scolosis and Spina bifida occulta

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Old 04-05-2010, 08:00 PM   #1
Join Date: Apr 2010
Posts: 3
oshie11 HB User
Question Living with Congenital Scolosis and Spina bifida occulta

Hi, I am a 23 year old female attending nursing school. I was diagnosed with a tethered spinal cord(spina bifida occulta) at 18months of age. Subsequently i was also diagnosed with congenital scoliosis. I am missing a bone in my lumbar spine (L5 i think). I had surgery to unteather my spine at 8 years old in Bostons Childrens Hospital. I also had a spinal fusion at 12 years old (at Albany medical center in NY) where they also untethered the spine again.
I feel like I have a lot of random health issues and I'm wondering if anyone else in my similar situation have as well. I am constantly tired and exhausted after any activity. I have IBS, headaches/migraines, all over aches at times and other things. If anyone else has a similar situation I would love to hear from you!!

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Old 05-24-2010, 12:40 AM   #2
Join Date: May 2010
Posts: 2
MandiH1980 HB User
Re: Living with Congenital Scolosis and Spina bifida occulta

Hi I am 30 and after a life long battle with back pain and unsteady gate they just diagnosed me with SBO and tethered cord. I too have IBS and severe migraines. I too have issues with my L5 half grew fused to my tailbone and half grew as a nomal vertebrae. I was told that the IBS was actually nerve damage from the tetherd cord and there was nothing they could do for that. As for migraines, mine usually caused a stiff neck and numbness in my arms and hands. If this is happening to you I suggest a neurologist. The reason I say this is with tethered cord there can be a brain abnormality called chiari malformation. This can cause headaches and arm numbness. The headaches usually get worse when you sneeze, cough, yawn or any of those autonomic responses. Hope that info helps you.

Old 05-25-2010, 01:54 PM   #3
Join Date: Apr 2010
Posts: 3
oshie11 HB User
Re: Living with Congenital Scolosis and Spina bifida occulta


Thank you so much for responding! I have heard of a chari malformation but I never thought about it affecting me with the SBO. I am going to bring up going to see a neurologist with my primary doctor. I'm also fascinated about the IBS that you have as well! Very interesting. Do you have any urinary problems? I have had a lot of UTI's and kidney issues and I am curious if it has to do with the SBO. Thanks again for writing back

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