Well, that was fast!

I got a call from my Neurosurgeon’s office today, asking if I could come in at 2. My original appointment was February 2 6 (oops, the 2nd is my younger son’s bday). Of course, I went.

I was worried I wouldn’t like him, because in general I despise doctors about as much as Tea Partiers. Ok, not quite that much. But a lot. I was thrilled a few years ago when a friend on Twitter suggested my primary care doctor, because I’ve loved her from day 1. But, a neurosurgeon? I think I expected him to walk in, announce that I had Chairi, and state whether or not I’d be having surgery and walk out. That wasn’t at all how it happened!
I did wait, about as long as the stereotypical doctor’s office makes you wait. I kept busy with reviewing the printouts that I had with me. One was of my meds list, which I had done for my primary care doctor. Side note: If you ever have to take more than 3 medications, put them in a chart or in Excel or something, and keep track of them! It took me almost 2 hours last week to organize them. I’m on 19 meds, with about 3 of those being prn, or “as needed”. The refill dates don’t match on most of them, and the number left varied from the bottle to what the pharmacy said, and for some weird reason, my anti-nausea meds are in the wrong bottle.

Where was I? Oh, yes. Since I had some medication changes this morning, I updated the printed list. And I added a couple of questions for the Neurosurgeon, beyond the 20 or so I already had for him on another printout.

Another side note: between my primary care doc’s office and the neurosurgeon’s office, I lost 3.5 pounds, even though I had a Subway sandwich in between. I suppose Subway commercials are right!

I waited long enough to wish I had another pain pill, because those seats in the room are enough to make an otherwise happy person curl up and cry. But, I think the wait, once I got back there, was really only about 10 minutes. I was in the waiting room far longer than that. One thing I’ve learned – good doctor’s don’t stick to the 5 minute time slot you’ve been allocated, when you need more. And so if everything else about a doc is good, I don’t mind the wait.

So, the doc comes in, and before he says a word, I already like him. Just something in his manner, I could tell he wasn’t coming in to tell me that my problems were nothing, and to go home. I just knew. So, he starts off by telling me that if I were a typical patient, coming in with this Chiari Malformation, that he’d send me off for other treatments. “But, from your chart I can see you’ve already done that”. Apparently, 19 meds is a little unusual, even for neuro patients.

He then proceeded to use the skull and brain, that I’ve pictured here, to illustrate what Chiari is, and how it is that it causes problems.Then he lays out all of my treatment options, which boil down to a) keep doing what I’m doing with the meds that aren’t working or b) surgery, which he recommended. And then gets the skull dude and the neck portion of the spine out to illustrate the surgery and how it works.

He looks at me, as if to see if I have questions. So, I finally tell him that I’m the kind of person who has to know everything (which is how I taught myself programming) and that with my mother being an RN, I know quite a bit about Chiari, but I don’t want to believe everything I read on the internet, I’d rather get it from an informed source I can trust. (I believe I scored a few points by saying that)

So, I tell him that I came in knowing that I want surgery, and started to explain that I really just want my life back. I want to go play in the mountains with my kids, and do something besides sit in a chair every night watching tv (no matter how great BSG is…). I was almost in tears, with this line I was going down, explaining that these symptoms were not something I could just live with, and what I hoped for my life to be. Luckily, I was interrupted by a phone call he had been expecting, so I didn’t actually bust out the tears on him.

When he returned, I asked about some of my symptoms that I wasn’t positive were a result of the Chiari, such as the memory issues and the nausea. I still wonder if they are, but he said it was more likely that they were a side effect of the medications I was on.

He told me that the big hope with the surgery is to get off of all of those meds, and not have the pain, headaches and numbness return. He did say that for the first month, most people are in so much pain, they wish they hadn’t had the surgery, but after about a month, the can see the benefits. And that 2 – 10 month recovery? Probably not nearly the 10 months, probably much closer to the 2, possibly even less.

I asked him what the risks were, and he said that besides the pain after surgery, the worst outcome is that the surgery doesn’t help. He’s not had anyone stroke during surgery, or anything like that. So, as I’ve read online, this surgery is probably the safest brain related surgery they can do!

He also said that the pineal cyst was too tiny to be an issue, and that I don’t need to worry about it, and that he felt that it definitely wasn’t causing symptoms.

So, then he asked when I want to do the surgery. I asked what timeframe we’re looking at, and he said it was up to my schedule, but he was thinking the first week of February. Knowing that my sister is coming out, and wanting to give her a little more time, plus wanting to finish my project at work, I asked for the second week in February. He stepped out, and when he returned, he asked “How do you feel about Valentine’s Day?”

Being a single gal, having surgery on Valentine’s Day probably makes it way more likely that I’ll get flowers and/or chocolates that day, so I said yes, and I’m set to have surgery on February 14.

Just like that. In a month from today, I’ll be in the hospital with a zipper head! Perhaps I should get my sister to tattoo “ykk” next to it? Haha!

Now that surgery is for really reals happening, I’m going to go watch those Chiari surgery videos that I ran across during research. I didn’t want to before, because surgery was only 95% certain. Now that it’s 100%, I’m morbidly curious.

I’m also researching Advance Directives and Medical Power of Attorneys. I have a friend who is an attorney helping me figure the forms out, so that should be fairly easy. And I know that I want my sister to make all of my decisions, but I need to figure out who I want as a backup. As much as I love my mother, and trust her instincts as an RN, she also has religious beliefs against blood transfusions. So, I need to decide who among my friends I should have as a backup. Not that I’ll need it, but this just kind of reminds me that I’ve been meaning to have one done for a while, and it would be stupid to go into this surgery without one. (Since writing that, while waiting to make sure most of my friends know, I’ve decided on and asked the backup)

On to a brighter note, for those of you who are my friends here in Utah, save the date – February 11 –  I’m hosting a party at which I will be shaving my head. I plan on drinking a lot of wine, laughing at a lot of brain jokes, and enjoying the company of friends. For those of you wishing to partake in the Hallmark festivities, I’ll throw some Valentine’s stuff in, too. :)

I’m sitting here waiting for a few people to call me back, before I go ahead and post this publicly, or send emails to work about the surgery date, before a close friend there calls me back. I guess that means it’s Battlestar Galactica time!

P.S. for JM Bell, I’m gonna milk this for all it’s worth before surgery, so you better be there this Saturday, as well as my party on the 11th! Cause I might die!

(for my kids, in case they read this – that’s a joke, I won’t die or anything, but JM Bell still needs to be there!)

P.P.S. I’m going to take my sister’s suggestion, and this will now be a Zombie Valentine’s Day party! Brainnnzzzzz!

P.P.P.S. I totally meant to say the name of the neurosurgeon that I so far admire – he’s Dr. Mark Reichman, of Neurological Associates, and his office is in the new IMC hospital center. IMC will be where I have the surgery done. If my BFF has her twins about that time, it’ll make it a two-fer for many of our friends! ^-^

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