Airport Security

Mom and I arrived back home from H-town about 1am this morning.

We saw the Neurologist about 2p Thursday afternoon. He told me that he wanted to try one more med before doing surgery. However, he is willing to progress with surgery right now if that's what we want to do. This med he wants to try has a different mechanism of action from all of the others. So, there is a chance that it might work. He told us that he really doesn't think it will work, but he would prefer to say that he has tried it and we know for sure that it doesn't. Rather than saying we wish we had tried. He reinforced that he would put me in the hospital the first week of November and get the surgery started if we felt that was the direction we wanted to go, though.

He told us that earlier in the week he and the other specialists had met to discuss one of their toughest cases and do surgery and that patient was doing well. He followed it up with, "you still hold our #1 spot for the toughest case we've seen." Am I supposed to follow that up with, 'Thank you, Darn, Yippee, When do I get my plaque on the wall of fame, etc.?" Hmmm?

He kept reinforcing that it is my decision. If we are just ready to get this over with, let's do it. If I'm willing to give one more med a try, then let's wait and do the surgery in January.

Then, we walked down the hall to say hi to my friend from college Dr. S, the pediatric neurologist. So fun that she's a doc and has her name on a door!! Wow! Mom and I each picked up one of her business cards. So official!!

We then walked a bit further down the hall to the neurosurgeon's office. My neurologist was going to call him and tell him about our visit and then we would go in to see him. Well, two hours later, they called us back. We waited about 30 minutes for his 4th year med student to come in to talk to us. We spent about 15-20 min. with her, giving her my history. She left and I had a seizure. So, she came back in to see the end of it. Then, my case became more interesting to her and she took all of the paperwork we had brought with us and was going to go research some additional facts. About 20 minutes later, the nuerosurgeon made it in to see us.

We love him. He is wonderful! He has an unbelievable reputation. It is rare to have a doc with such great "bedside" manner and be so incredibly technical at the same time. He has them both. They have kept a <1% infection rate after his surgeries due to his approach, preciseness (did I make up that word?), etc. He is a rarity in his field and a blessing to have found, thanks to our friend, M.

His approach was that he definitely sees this as a tough case., but he's willing to pursue it and sees that surgery is probably my only option. However, it will be much more drawn out than usual. I need to do some research on some of the terms he used with us. I'll try to post about those later.

He threw out an idea, for one more procedure, that I could have done before the big surgery to help them a bit more. He is going to talk to my neurologist about pursuing that, in the meantime.

However, he basically explained (this is the short version) the procedure to be:

1. Come in and have a test done where they put one side of my brain to sleep to see where my dominant functions are...wake that side up, put the other side to sleep, test the other side for its major functions.
2. Shave my head, cut open my skull, place grids on my brain and shunts in the back of my head to drain all of the excess CSF
3. Possibly drill holes in other parts of my skull to place other types of electrodes
4. Go to ICU overnight to make sure there is no infection or other issue
5. Once I have enough seizures:
a. we got everything they needed, yeah!! Proceed with surgery.
b. we didn't get enough info. so, go back in and reposition the grids to get even deeper in the brain and repeat steps 4-5a.
c. we got enough info to know we can't do surgery. Sorry, go home with your bald head and have fun!!
6. Go in to remove all of the electrodes.
a. Cut out the bad part of the brain
b. if it's a super deep & dangerous area of the brain, wake me up, and ask me lots of questions, etc., while taking out the bad part of the brain (thus, making sure I'm not going to be paralyzed, unable to speak, etc.)
7. Put my skull back together with titanium plates and screws (no, I won't set off airport security alarms--no fun, right?).

With most patients going in for this surgery, they say the success rate is about 90-95%. However, with my case being so different, they see it as closer to 60%, maybe. However, that is better than the 5% with the meds I'm on right now. So, they feel it is a better chance than sitting still and doing nothing. The neurosurgeon did encourage me to wait until January. He said that he felt that was better because if I have it this year, I will be in the hospital over the holidays. However, if I wait until January, we will have seen for sure if the med worked or not and the holidays will be over.

He also said he understood that I just want these to be over. He tried to rationalize that it's okay to wait another two months when I've already gone 2.5 years. I wanted to say, "that is my point exactly: I've already gone 2.5 years. Why would I want to wait any longer?"

So, since we got home at 1am, B and I haven't had a chance to talk yet, but we need to sit down and discuss where we will go from here. Hopefully, we'll have a chance to talk tonight and see what direction we want to go from here...

Thank you to all of you super star prayer warriors. Please pray for our wisdom, peace, etc., in these decisions. As well as, wisdom for the docs.

p.s. For all of you that have been asking and praying, Ben passed the big test he was studying for...YIPPEE!! Now, he's licensed to sell securities and mutual funds, too.