Thursday, July 22, 2010

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.

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.

Jessie's Dad


Anonymous said...

Thank God for good news!! We will continue to pray for you guys as you await your "2nd opinions". Give Jessie a great big hug from the Stuart's in Illinois. God Bless!!! Nikki

Brande J. said...

Ah!!! What a relief. I was so worried for sweet Jessie, I was hoping it wasn't anything serious. I know getting a shunt isn't ideal, but I'm glad it is a somewhat easy fix to her "seizures". Love to you all and thanks for the update!

Anonymous said...

Woo hoo!

pamjindu said...

Dear Chris and Kristie
I'm sooo pleased to hear your news. I have been checking a few times everyday for an update. It hadn't crossed my mind that she could be suffering from hydrocephalus. Interestingly we thought Daniel was fitting again a couple of months ago as he would complain of a headache, lay down and be quite unresponsive and then vomit. This continued for about 6 weeks until they adjusted the pressure on his shunt 3 weeks ago and since then he has been fine. Daniel has a shunt with a programable valve where you can adjust the pressure with a magnet from the outside. He has had a shunt for 7 years pre hemisherectomy. It is indeed minor sergery compared to a redo as the do not even need to open the skull. If I can be of any help info wise my email is Take care and God bless Pam

Amanda said...

We're so glad to hear it. Phew!

Patrice Sarath said...

This is very good news and what a relief! Patrice and Ben

Anonymous said...

good afternoon,
I am 42 years old and have been hydrocephalic since birth. I recieved my first shunt at the age of 5 months. I would be more than happy to answer any questions you might have about living with it. email me and I will give you my phone number.


Hardy Family said...

Great News for you all. I hope all hospitals/doctors find same conclussion so you have answers. Still praying.