On living low

>> Wednesday, April 26, 2017

First let's have a little lesson:
The spinal cord carries out two main functions: It connects a large part of the peripheral nervous system to the brain. ... The spinal cord also acts as a minor coordinating center responsible for some simple reflexes like the withdrawal reflex."

"Although the spinal column is somewhat flexible, some of the vertebrae in the lower parts of the spinal column become fused. The spinal cord is located in the vertebral foramen and is made up of 31 segments: 8 cervical, 12 thoracic, 5 lumbar, 5 sacral and 1 coccygeal."

Where does the spinal cord begin and end?
For example, lumbar and sacral spinal cord segments are found between vertebral levels T9 and L2, and the spinal cord ends around the L1/L2 vertebral level, forming a structure known as the conus medullaris."

A good read: Tethered Cord Syndrome and Occult Spinal Dysraphism

So....Bug had his MRI and did well, only 3 seizures while waking up from the anesthesia.

We got a copy of the MRI and Glenn downloaded the viewer. It was quite pretty and then we started comparing to normal MRI's and Tethered Cord MRI's. We thought his spinal cord may 'conclude' a little lower (a lot lower, like 3 vertebrae lower) than a normal cord. Parents I know who have lived through this diagnosis saw it and also thought it looked like a probable tethered cord since the cord extends below the normal point. Very clearly. We even thought the bright white spot at the lowest end of the cord is the fatty filum. Classic tethered cord.

We prepared to hear: he needs back surgery.

Instead we heard; It's normal! Congratulations!

I've been crying all day and trying to decide if we get a second opinion. Most people think we should and I am filling out forms and uploading medical records but...I'm just not ready for this type of battle. I'm still dumbfounded it IS a battle. Am I seeing things? I keep thinking I am seeing things. But then I look again and it seems VERY clear: THAT IS A LOW LYING CONUS.

And Bug falls off a chair.

I'm defeated at the moment. Defeated.


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Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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