JUNE 25, 2014
Today is June 25, 2014 and we are sitting in the Vanderbilt Hospital awaiting surgery for Heather to have her Vagus Nerve Stimulator replaced. This will be her 7th replacement, since her first one was put in 16 years ago. Her settings are so high that she literally burns these generators out every 22-24 months. The normal replacement time is 12-15 years, but as we know, Heather's situation is far from being considered what others would say is normal. Her Neuro-Surgeon, Dr. Neimat here at Vanderbilt, told us that he has never known of anyone having this many replacements before. Dr. Neimat is also the doctor doing her surgery today.
We have been in Nashville since Monday, with Heather having several Doctor's appointments and tests being run. She went to the operating room about 20 minutes ago (2:30 pm EST), but before that Heather has had 13 seizures. Please pray that the VNS will give Heather some reprieve from all the seizures she has had over the last few weeks.
We are looking forward to getting back home, after being gone last week to KY, with our teens at camp, and then this week up here in Nashville. We will try and keep this site better updated about Heather's condition, and also about her future tests, as well as the decisions that will need to be made over the next few weeks.
On May 6, Heather was put in the Epilepsy Monitoring Unit in the hospital at Vanderbilt to video monitor seizures. The tests showed that she has 3 or more active areas on the left side of the brain that are starting her seizures. With this news, we were told that she would not be a candidate for the neuropace device that had just been FDA approved.
We will proceed with the necessary tests to determine if Heather can have surgery for treatment of her Rasmussen's disease and to stop her seizures. The next test will be a nuero-psychology test, and the last is a WADA test. The WADA test is the most important test because it will tell the doctors exactly what the left and right side of the brain are doing. They actually put one hemisphere asleep and give commands for her to follow, then they put the other hemisphere to sleep and give her commands as well.
We await surgery to replace her VNS, and proceed with the tests. They have stated the only way to stop the disease and the seizures is to surgically remove her whole left hemisphere. We covet your prayers in the decision making process for all involved in her care!
JUNE 9, 2014
Today is June 9, 2014 and once again we are in the doctor's office. We are waiting to have Heather's VNS checked. She has increased in seizure activity the past week with about 30 a day, and we know that her device is getting near end of service. Her last battery was replaced in May of 2012, and is expected to go out at any time resulting in another surgery to replace it.
Since our last update, we have been very busy visiting doctors and having tests run. We were able to see a neurosurgeon and have been introduced to a new neurologist at Vanderbilt in Nashville, TN. Heather has undergone a recent MRI, which revealed some very disturbing news. The Rasmussens's disease has taken over Heather's whole left hemisphere, leaving it greatly damaged. We weren't expecting the news of these findings and with it came more disturbing news regarding treatment options. Heather's left side of the brain is diseased all the way to the back of the brain.