Doc Visit

The visit with the doc went okay. We were impressed with him. When all of this started in March 2006, I was very dizzy, nauseated, and started running into walls. Most of the docs that I've shared this with, smile and nod, and take their notes. However, this one wanted to know every last detail of what was meant by dizzy. He gave me multiple definitions and wouldn't progress until he had an exact answer. He wanted to know what my vision was like, type of stability, what direction I usually fell, etc. It was impressive to us that he didn't just gloss over everything.

He wants me to come back down to Houston and be admitted into the hospital there. It will be about 4-5 days in the Epilepsy Monitoring Unit (EMU). So for those of you that live in Houston, you'll have to come see how frightening I look with a million (okay, I'm being dramatic) leads all over my head! We are looking at next week or late August/early September. This is based on when he's on call. The unit is pretty full right now. So, the end of August seems most likely. They have some machines and the ability to run certain tests that do not exist in many other places (about 8 in the world). He believes this will give us a much deeper look at what is going on in my brain before approaching surgery as a viable option.

He agrees that since I haven't already responded to the first few meds, it's unlikely that I would respond to any others. On the same note, he agrees with the plan to titrate off of one of the meds I am currently taking. He wants me off of it completely. So, while we wait to see when I will be admitted, I will continue to gradually back off of that med. One of the questions that we had to answer while filling out all of the paperwork was, "how many seizures have you had in the last two months?" We pulled out my seizure calendar and started counting. The answer was a bit overwhelming. What is your guess?

The answer:
275!!

Was anyone close?

We had originally thought that if we were going to do a surgery, we would want to begin with the Vagus Nerve Stimulator (VNS) because it seemed less invasive. He said that it has a 50/50 chance of working. Working is defined as decreasing the seizures to some degree. Of those seeing an effect, it has about a 30% chance of taking your seizures to zero. So, the odds aren't that great. They tend to offer the VNS as an option if the resective surgery does not work.

On that note, they can't determine if the surgery will completely cure the seizures because many times the area surrounding the source of the seizures has learned how to seize. So, when that is removed, it doesn't mean the area around it won't trigger seizures. They have no way of knowing the end results of the surgery. Also, patients have to remain on anti-seizure meds even after the surgery. So, I wasn't thrilled with that. I want to be off these meds.

As far as being encouraged as to what my options are, that did not happen. As far as being encouraged that I am in good hands, that did happen. We were incredibly impressed with the doc. One of our concerns was that these guys are so specialized that they just recommend surgery for everyone. The couple that we had dinner with on Sunday called us to check in on Tuesday. They told us that this doc does everything he can to avoid surgery. We found a lot of comfort in that.

We also learned that the neurosurgeon doesn't completely shave a woman's head when he does the surgery. He just shaves the part he needs access to...since that is my left side and my part is on the right, my hope is that I could possibly cover it and not look too silly. I still think Mom and B need to shave their heads, though. Otherwise, I could go with a Cyndi Lauper look. Which is your favorite?

So, in the meantime, we are going to try to pursue some alternatives. We're not sure of exactly what those will be, but we are going to start looking into other choices. I had two really weird seizures this morning. I was shaking during both of them. That has never happened. It was almost like the way you would shiver if you were cold. However, I don't recall being cold during the seizure and when it was over, I was hot. I am usually very overheated during and after the seizure. So, it was weird and we've put a call into the doc to get their idea on what is going on...my prayer is that it was the Lord shaking the last few seizures out of me. What do you think?

A few prayers and praises:

• Praise the Lord that I have such an amazing husband that is so devoted to me during this yucky time. He continually points me back to the Lord and His will.
• My mother is so amazing. She would sacrifice anything and everything to get me better. She is doing so much research to find answers and she keeps encouraging my faith and trust in the Lord.
• I am so blessed to have friends like you that are willing to check in on us and read all the way to the bottom of this post to see how you can pray and love on us. Thank you.
• That this would all be about God's glory and have nothing to do with me.