X-post tethered spinal cord

Hi Mommas!

Just looking to see if anyone has experience with this, I have never heard of it unti, yesterday. We noticed a bump on my son's back right above his tush, showed the pediatrician who sent us for an ultrasound. The result of the ultrasound was that they think he has a tethered cord(the nerves are attached to the spine). We are going for an MRI on Monday to look further into this and then will most likely be sent to a neurosurgeon.

He is only 5 weeks old and as a terrified new Mom just looking for anyone who might have experience with this and can give me some advice.

Re: X-post tethered spinal cord

I can not offer any advice but facebook has a few groups dedicated to this. You may want to join ?

I can only imagine how you are feeling !

Re: X-post tethered spinal cord

Hi, in the end my son did not have a tethered cord, but he did have a pilonideal sinus/sacral dimple and had spasticity in his legs, so tethered cord was on the differential diagnosis. From the brief research I did, it seemed that if it is causing symptoms, it is very successfully treated by neurosurgery (although I am sure that is a frightening prospect for any parent of course) with almost no complications and very little healing time and follow up . In the end I was a little disappointed that my son did not have that as he wound up with another diagnosis instead which requires a lifetime of physical therapy, etc. it seems the surgery amd prognosis for tethered cord is excellent, though I am sure that is of little comfort right now. Best of luck to you and your little one

Eta: if you need a pediatric neurosurgeon, I absolutely loved mark mitler at Lij.

Message edited 1/16/2015 8:20:32 PM.

X-post tethered spinal cord

Thank you so much for your reply. We are going monday for the mri but the dr seemed pretty sure that is what it is.

I hope your son is doing well!

X-post tethered spinal cord

Hi there,

It was interesting that you posted this because I also was just going thru this. My son however just turned 3yrs. He has no markers at base of spine but we just did MRI on tuesday at LIJ which came back normal. We did full spine which is broken into 3 parts. I pray your sons does as well.

My son can walk independantly but has issues with his Right foot. He toe walks, falls easily, wears orthopedic braces. We have yet to find out what is causing all of this. They also required blood work so I would suggest asking that if they need anything, do at same time. This way the poor guy does not have to get poked multiple times & can do while he is sedated for MRI. PM me with questions.

X-post tethered spinal cord

Thanks for the responses and support. We went for the mri Monday and met with the neurosurgeon this morning. He has a mild form of spina bifida as well as a tethered spine. The dr wants to wait until he is 6 months old to do surgery but the prognosis is good and with surgery should go on to develop normally without any issues.

X-post tethered spinal cord

Glad to hear he will be ok.