Brain Surgery Pt. II

So this Tuesday I am going to have a bypass installed inside my head. This better be the last time anyone opens up my skull. I will be gone for a few weeks from communication.

Getting angiogram Friday. This will be the ground zero map of my brain.

What is Moyamoya

I found out that I had Moyamoya the night before my surgery. I finally got this letter from Dr. Spaetzler and he said that and that he suggested a double bypass. The next morning, in the pre-op room, I told my neurosurgeon and he said, yes, he had the same diagnosis. I was only able to read a little bit about Moyamoya the night before; a godsend that I didn’t have time to obsess.

Moyamoya means “puff of smoke rising” in Japanese. It was first discovered less then 50 years ago, it seems to predominately happen to Japanese and it is inherited, but it is not a dominate gene disease. It occurs near the Internal Cartaroid Artery inside the brain, in the Circle of Willis. The blood vessel system is duplicated on both right and left side of brain, so you can see where it is regular and irregular when you compare both sides. On my left side, the blood starts to go up one vessel and there is this nest of tangled, thinly walled blood vessels, but they are nearly occluded. They say it looks like smoke rising. I think it looks like a rats nest. I have had this my whole life and yet didn’t really have any symptoms. The amazing thing about this is that my body built it’s own system around it; it re-routed blood vessels to get around this failing system. The human body is an amazing thing, it can overcome things without you even knowing it.

When they performed the surgery, they prepared me for a bypass; they would take a vein from my scalp and use it to route around the tangled nest, but they decided not to install it when they were inside my head. The figured that the work-around my body created was working well enough compared to the risk that they bypass had.

I will have an angiogram done in the next month to create a ground-zero image of my brain, to know when things are getting narrow or failing in the system and then I would have to undergo brain surgery again to do the bypass. Let’s hope that doesn’t happen anytime soon.

Last Part and Beyond

So this Friday I saw my neurologist and he said everything is fine. I may eventually need another surgery to put in a bypass, but not yet. They will do another angiogram in the next 2 weeks as a marker of where I am now, then I only need to see him once a year. It's over. He said that one of the aneurysm he clipped was on the brink of rupturing. I feel so lucky, I could have been dead last month, but instead, I am alive and ready to get back to living. When I asked if there were any restrictions he said, None, no limitations, I could do anything, lift weight, run, sit in the sauna, drink a bottle of wine. It made me so happy to hear. Except no headstands, but that's cool.

I have some side effects, my head itches, but when I try to scratch it, it's numb on the skin. I feel like the room is always bobbing, like I have been on a boat, my sense of smell isn't working just right, short term memory can sometimes be an issue and last of all, I have a hard time with my eyes when going from tiny up close print to looking long distance. All of these are minor and will clear up in 6 months.

Amazing Video

My friend Kelly Jackson sent me a link to this video of a relative of hers. It is stop motion and about brain stuff, and it is very moving.

http://www.youtube.com/watch?v=vc_lnnnekwk

How I Found Out - Pt II

So in October last year I went to see my endocrinologist at 6pm 2 days after my CT Scan and she pretty much laid out that I had an aneurysm and that she had already set up an appoint in a few days with a neurosurgeon, someone she has sent patients to many times for pituitary removal. Off I went. He looked at the CT Scan and said that I would need to undergo an angiogram in November, he felt like I had an AVM that could be treated by gamma knife surgery, where they screw a mask on your face, bolt that to a table and then beam a laser at your head, or I could have some angio surgery like coiling, where they go in the femural artery, and put something in the blood vessels in your brain. And I thought that was not great, but doable.  He is the medical director of a local hospital's neurosurgery group, so I thought he was very skilled, but then I found out the truth.


I had to wait a month to see him, and when I went to my appointment, I waited for 1 and half hours. And not one person who was there felt they need to say anything. Pete was not able to come because both of our children were home sick. But I thought, no big deal, he's going to say what he told Pete right after the angio. 


He came in the room, sat down, popped open the xray machine and showed me my brain, and then said, "You have an aneurysm and over here, this thing that we thought was an AVM, we don't know what it is, we've never seen it, and we'd like to send it to a neurosurgeon, Dr. Spaetzler, who has done thousands of open brain surgery, because they might know what it is, and how to deal with it. We can't do the simple surgeries, I can send you to my partner to clip the aneurysm, he does the open brain surgery. But let's wait and see what this doctor says.


I waited 9 weeks and called ever week and never got an answer. Thank the universe for my mom, she's really into medical stuff, has a love affair with the medical field. So she took it upon herself to go to Oregon Heath and Science University (OHSU) and inquire at the Neurosurgeons office. I called them, got in 4 days later to have a consultation with the director, was told that I needed to have surgery and she the guy who specialize in complicated projects, and he saw us 4 days later. That was March 5th. He and his crew, nicknamed Skull Base, were amazing with us, and they made the appointment to clip it in 10 days, so I could get through this and get on with my life. He also had talked to Dr. Spaetzler already about me, they were good friends and apparently I was the talk of the neurosurgery world, but hadn't a clue about that. 


The night before my surgery I received a letter from the first doctors office, it was a copy of a faxed letter from Dr. Spaetzler, and he said that I had Moyamoya and he would recommend a bypass when they went in to clip the aneurysm. When we saw Dr. Delashaw, my surgeon, he came into the pre-op room and we told him what Dr. Spaetzler said and he said, "Yep, that's what the diagnoises is, it's Moyamoya, but if your brain vessels are functioning, we won't do the bypass. They went in and they found 4 anneurysms, the angios that were done only showed one, but under it were some buddies. And they decided not to do bypass. 


I was out and 4 hours later I woke up, and I had the worst headache in my life, it was like a cartoon when someone gets hit with a big mallet or an anvil. But after 3 days in the hospital I was able to walk around very well and so they sent me home.

Getting a head cold after brain surgery blows.