The great news is that the MRI didn't not show any new growths or significant change. The kidney ultrasound looked good as well. We did not discuss the EEG in detail which was a bit disappointing.
We are decreasing the Topamax which has rendered Oliver almost non-verbal. We will be totally off of it in 2 weeks! We will also be off the Sabril at that point too! It is so exciting that he'll only be on 2 meds for his seizures. He is still on 2 other meds for asthma but, overall that is better than the 9 medications we got up to a few weeks ago!
Our next step is going to be with the Vagus Nerve Stimulator (VNS). We have an appointment with Dr. Grant, a Duke neurosurgeon on May 6th. We are hoping after that appointment we will have a surgery date really soon. We are pleased we could have the consult with Dr. Grant so quickly and are anxious to get the VNS implanted! It can take up to 6 months to see the full effect of the device.
If the VNS doesn't work, Oliver could potentially be a candidate for brain surgery. Dr. Mikati said that he would recommend we go to Detroit to see his friend and colleague, Dr. Chungani. This doctor pioneered a PET scan where the dye goes to the Tuber that is causing the seizure. Then the PET scan is compared with the CT and MRI to try and locate the actual problem area of the brain. This is important because TSC brain resection surgery is particularly challenging. It doesn't always work because there are so many tubers that it is hard to be sure you are getting out the right culprit. At this point, if there was a way that they could remove the area of irritation and it render Oliver seizure free, it is worth it to us. His quality of life and development are on the line these days. The brain of a 2/3 year old is extremely mailable. The younger you are when you have brain surgery the better the outcomes are for your long term development. So we will begin exploring this option. It takes a while, as you can imagine, but it makes sense to start the process. I also plan to call Boston and get their thoughts on this issue.
Overall, we feel encouraged! We are ready to move forward and feel hopeful. We are thankful that we have these options and things are falling into place rather quickly.
Oliver has TSC but, TSC does not have Oliver!
1 comment:
I'm so sorry your going through all this. I feel your pain..and frusteration! It was great talking to you back in... March, was it? Thank you for your sweet email following(that I never wrote back too! :( oops! ) I have started a blog as well. It's been slow coming and a lot of work, but I think the rest is smooth sailing from here. If you're interested here's a link.. http://sheshischildfirst.blogspot.com/ We're talking about taking a much needed vacation before Riley's brain surgery in July to NC. Maybe we can see you! Hang in there feelow TSC Mama! Love, Kami
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