The MRI was today. I'm glad to be posting. I felt great about it [the MRI], though I knew there was a greater than normal risk, due to the pacemaker. But they sent some guy in to have me sign a paper that said I understand the risks who seemed far less at ease about the whole thing than I was really comfortable with. So, the first part of the MRI, I kept thinking something was feeling weird, but was recognizing it as anxiety, but I wasn't completely sure, and and and and and and.....so I said something about it and the tech replied with the fact that if nothing had happened yet, it wasn't likely to do so. When they asked about claustrophobia before the procedure, I told them that as long as I can breathe, I should be ok. But the aural space was too small and I wasn't prepared for that. Those repeating noises were almost too much. A CNA was telling me that her son really was into music. I wanted to tell her about Edgar Varése and his Poeme Electronique from 1958 and how the MRI was similar to it. (Listening in headphones gives a pretty accurate depiction of the 40+ minutes I was in there. Also, listen with a cheap football helmet on). Not much fun, but hopefully it gives the neuro a welcome bit of detail to work with. No results or anything from the MRI just yet. I have a copy being sent to me, but I don't know how to read them, so we'll see if I can make any sense of it. [The Varése piece falls in the category of 'tumor humor', in case you're wondering "oh the audacity of someone to put something that sounds like that on their blog!"
So, I see the new neuro on Monday for the consult. The last couple of days have been really stressful. The WTF? factor has faded away and now I can think more rational thoughts. Thoughts like: What could go wrong? What will recovery time be? How much work will I miss? What kind of rock and roll street creds will I gain if I suddenly develop a bit of a British accent? What if the new neuro isn't at all different than the old one?
A plan has developed that includes a back up. Plan A is going with the new neuro. I can recover at home in Oregon and all will be well. Maybe after I regain some strength I can spend a week in Southern California and "help" Jai help out her 93 year old dad or something while I've got short-term disability insurance to help me out. Plan B is to go to LA for the surgery. On a lark I emailed Cedar Sinai last night and at about 9:05 this morning I got a phone call from them. They were able to set up an initial consult on Monday. Yeah, Monday the 27th. It was exciting and interesting, if not refreshing, to have such a quick response. After some further questioning, I learned that they didn't want to schedule an initial consult without the MRI data. I said I would call them back. Jai and I made up a list of questions and then called Cedar Sinai back again. The basic administrative questions (do you take my insurance, etc.?) were answered quickly, confidently, and in a friendly manner. We came up with a few clinical questions and the gal went to ask a nurse. When she came back, we had a few more so she forwarded us to the nurse. We had to leave a message (it was 4:30pm on a Friday). Seems cool and I'm not going to be too surprised if I get a call tomorrow morning.
Two things I've learned today: 1. Stop calling and asking questions of medical professionals on Friday afternoon if you don't want to wait for an answer. 2. Jai and I wrote down all of those questions we came up with so we can ask them again on Monday, aka: we know what questions we want to ask. So, if things are cool on Monday, then excellent, we'll probably be in the operating room on the 5th or soon thereafter. If not, we'll be flying/driving to LA on the 3rd or maybe the 2nd after the MRI and be in the operating room on the 5th or soon thereafter.
Sometimes this seems like a big sea tanker barge of bullshit to deal with. The picture below is one I took this morning while I was at work. Suddenly, it's all worth it.
I visited my cardiologist for my routine pacemaker check-up today. He had been working on getting my MRI scheduled with the people who can shield the pacemaker from all of the magnetic fields. Normally you can't have an MRI with a pacemaker for danger of the pacemaker parts, especially the leads that are healed into the heart muscle tissue, flying out of the body and attaching to the MRI machine. Magnetic Resonance Imaging. I wonder if it looks and sounds like this?
So, it seemed at one point that I might have to have my pacemaker replaced, adding another surgery to the process. Well, I talked with my cardiologist and his office said that the new kind of pacemaker does exist. However, it's not a easy as just swapping them out. Apparently the leads that go into the heart to create the artificial beat/rhythm correction heal to the heart muscle, and that removing those leads comes with a lot of risk - more than would be wise for proceeding with such task. But, he told me that there are some people at the university hospital in Portland that have developed a method of shielding the pacemaker and its leads in a way that makes an MRI possible.
My interpretation of this, is that it's one less surgery and the neurosurgery can therefore happen sooner. Which, of course brings up the $64,000 question: What did the neurosurgeon have to say today? That I would get a call tomorrow. When I talked with the medical assistant, I passed on the info about the pacemaker and asked that that info also be passed on to the doc. So, here's to tomorrow. Tomorrow. I love ya, tomorrow....
It's me, Kevin, but with a brain tumor. Disclaimer: I have a very dry and twisted sense of humor. This is a scary situation. The jokes ("tumor humor") could be a little dark from time to time. I intend to keep this rather interesting for you, but if I get a "how could you SAY that?!?" response from you, know it's just, well, I hesitate to use "gallows" humor, but I don't have better phrase for it. Enjoy, and thanks for your support through this time.