Saturday, April 19, 2014

Cleveland-Week 2

Well life got a lot busier here in Cleveland since the last update. After finally getting over 3 days of sickness from the Anesthesia and morphine from Surgery we finally were able to get me of my meds for my Epilepsy and get the show of seizures going. From Friday 4/11 to Today 4/19 I have had 9 concrete seizures and a lot of other seizure activity on my EEG. These seizures have given the Dr.s a clear idea of where exactly my Epilepsy comes from. We've realized that my seizures come from my Left temporal brain area knows as the Hippocampus which stores the brain's language and memory functions.

What does this mean?? Well, in a nutshell, I am not a candidate for resection surgery because they cannot remove the hippocampus without leaving me with massive memory problems &/or language issues.

So since they found this they have been stimulating my brain with small electronic currents for 3 hours on\3 off since Thursday 4/17. So far since then I have only had 2 seizures, both happened during the time I was not being stimulated.
The wires coming from my head. 

Apparently I am a very interesting case because I have some seizure activity on both the righ and left sides of my brain though most of them are coming from the Hippocampus. Adding to my 'strangeness' is the fact that my brain has been very responsive to the stimulation despite my seizures coming from 2 areas.

The type of treatment that is being suggested for me going forward is to have a deep brain stimulator put in my body that would give me enough stimulation to reduce my seizures significantly if not completely. The issue with this is that the stimulator right now has never been used for Epilepsy before and it is not FDA approved. This type of stimulator has been used for people with parkinsons but not for Epilepsy so if I were to have it implanted I would be the very first person to use it for Epilepsy. While that is exciting it's also a very expensive option right now-one that we would need the maker to consider donating one to me because insurance will likely not cover any of it. One of these stimulators is in the range of $80,000. The Dr.'s are positive that I could probably get a stimulator donated at some point down the line because of the curious interest in developing it's usage for Epilepsy.

Moving forward for us right now is going to be surgery on Monday 4/21 to take out my electrodes and we will probably be able to head home on Tuesday. While JW and I remain very thankful for this oportunity and the answers that it has given us we remain completely excited to go home. We are growing very impatient for Home and that has been the hardest part of being here.
Pictures of our kiddos are flooding our room and giving us something to smile at and look forward to!

Right now we just need patience for a couple more days of testing and the physical discomfort that I am having because of staying in bed for 14 days.

We thank you very much for the prayers that are going up for us because we are feeling God's great strength through this and we marvel at how well our children are doing as they are separated from us.  :) 
I look forward to giving you the next post from home but until then, thank you!

Blessings friends, 

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