Good News!! Hydrocephalus?!?!?

Hydrocephalus is basically the build-up of cerebral spinal fluid (CSF) pressure in the brain. If you are interested in reading more, here is a link in Wikipedia, but it is very frightening stuff, most of which doesn't apply to Jessie. http://en.wikipedia.org/wiki/Hydrocephalus

So what does that have to do with Jessie? Well, the neurologist (epileptologist)/neurosurgeon at Cook Children's Hospital now believe that Jessie has Hydrocephalus. Evidently, the MRI that was taken yesterday (Wednesday) was very telling. Also, Dr. Perry (Epileptologist) was nice enough to call us immediately after he read the MRI, and let us know his finding.

What he said, was that their diagnosis of seizures was only from the clinical presentation of episodes that looked very much like seizures, and that the EEG didn't show seizure activity after a close look. The MRI, on the other hand showed signs of Hydrocephalus that could explain all of her symptoms. The main thing that they noted was that the ventricles were significantly large than they were a year and a half ago. Indicating increased fluid and pressure.

So why is tegretol slowing down the episodes? We'll evidently, the soothing effect of Epilepsy medicines can do that when the brain is irritated from the pressure. The interesting thing is that Jessie has had the tummy episodes since immediately post surgery, so she has probably been dealing with this mild hydrocephalus for a couple of years. There is really no way to know for sure.

What do we do next? Well, Dr. Hunnicut said that he needs to put a shunt in. A shunt is like a tiny tube in Jessie's brain that helps regulate the pressure. Many hemi children have one, but we hoped that Jessie would not, because they can malfunction and need adjustments, etc... Without it, however, hydrocephalus can cause brain damage.

So, now we have an opinion from Cooks in Fort Worth. Next stop Johns Hopkins and UCLA. Luckily we don't have to actually go there. We are having all of Jessie's tests sent to Johns Hopkins and UCLA. The Doctors at Hopkins (Mathern/Sankar) and the Doctors at Hopkins (Carson / Vining) will look over the data and come up with their opinion. If they all agree with Hydrocephalus, then will will schedule surgery sometime in August for a shunt.

Shunt surgery is a short brain surgery and not nearly as invasive as a Hemi Redo. You can read about them online if you are interested. We plan to stay at Cooks for the shunt surgery if needed.

So if the hospitals don't agree??? We'll cross that road if we have to.

The take away from this confusing blog post is Good News. Things could have been much worse had Jessie needed a Redo Hemi Surgery to get missed tissue and connections. And things would have been really bad had she had seizures originating from the good sign of her brain, or God forbid, Bilateral Rasmussen's Encephalitis.

Hydrocephalus?? Who would have thought it?

Thanks to everyone for reading and keeping up with Jessie. I want to let you know that she is in GREAT spirits and still has that great smile on her face all the time.

Cris
Jessie's Dad