Sunday, July 18, 2010

The Thing About the Thing

Because this is my first post about the thing in my head (hereafter known as "the thing"), I'm going to be pretty clinical and matter-of-fact about it. But, rest assured, while the purpose of this blog is to keep people informed of my medical state and prognosis, it's also meant to keep me sane by pontificating, speculating, and gesticulating about anything and everything the thing brings to mind (pun intended). I guarantee I will say things which will make some people uncomfortable. I apologize for that. But, really, what are you gonna do -- pick on the guy with the aneurysm?

There, I said the word -- I have a brain aneurysm. To quote my CT (cat scan) results, I have a... "giant aneurysm in the region of the right middle cerebral artery centered in the sylvian fissure with some resultant mass effect." For the record, I'd like to say that "giant aneurysm" is a medical term as unfortunate as "geriatric pregnancy" (any woman 35 or older). Equally insensitive is the fact that the same report calls the left hemisphere of my brain "unremarkable". Really? Are you trying to start some sort of competition between my lobes?

The rest I'll put in the form of an FAQAKA (Frequently Asked Questions About Ken's Aneurysm):

You've got a what now?

I think we all have a vague sense of what an aneurysm is. I thought I did, anyway. But I've checked with Wikipedia just to make sure: "a localized, blood-filled dilation (balloon-like bulge) of a blood vessel[1] caused by disease or weakening of the vessel wall." Yup. That's what I thought. Honestly, I haven't done much more research than that, because while information is power, ignorance is also bliss.

How did you get an aneurysm?

Are you looking to pick one up for yourself? Because I honestly can't recommend a particularly good way of getting one. Apparently, according to my doctor, most people never find out how or why they ended up with one. Many people, of course, never find out they had one to begin with. And, no, wiseguy, that's not because it killed them before they had the chance. According to my doctor and Brain Aneurysm Resources, up to 1 in 50 people will develop a brain aneurysm over the course of his/her lifetime. That statistic is largely based on autopsies performed on people whose deaths were not caused by said aneurysms. So they're just one of nature's many hiccups -- like four-leaf clovers. Only not so lucky.

They are also, thankfully, not traditionally hereditary, so I don't have to worry about passing it along to my kids. I simply turned 40 and opted for an aneurysm instead of the red convertible.

How long have you had the thing?

Good question. Also one that will most likely never be answered. Best guess (from my doctor) -- a long time. My symptoms suggest at least 8 years. My CT (see below) also showed calcification around the thing, which takes a fair amount of time to form. Also, while it is "giant," much of it is clotted (thrombosed), also a sign of age. And while I've been exhibiting symptoms for 8 years or so, it would have taken time and growth before any indications would occur. So I'm lucky I had any symptoms at all.

Whadda you mean you've had symptoms for 8 years! Why are you only finding out about this now?

No need to dwell on the past, but, in my defense, my symptoms have been extremely mild. My wife (henceforth referred to as Jamie) loves this (not), but right around the time we got engaged (in 2002), I started having what I termed "anxiety attacks". At least that's how I wrote them off. I was going through a lot of stressful changes in my life at the time (and have since -- between career adjustments, home ownership, and the call to parenting). My doctor has since identified those "attacks" as seizures caused by swelling in my brain (a.k.a. edema), caused by the thing pushing on stuff. So now we can say that 8 years ago Jamie "blew my mind" when she proposed to me (much nicer, right?).

At the time, I would never have called what was happening a "seizure". This is where medical dramas perform a disservice, by showing the extremes of medical conditions. Here's what I would experience, perhaps once or twice a month, often less frequently, over those years:
  1. A sinking feeling in the pit of my stomach.
  2. A general sense of unease.
  3. A feeling of being flushed in the face.
  4. A mild sense of distraction, like having a song stuck in my head that I couldn't quite place. Truth is, at first, it literally manifested itself as a song stuck in my head. I've never quite placed it, but I think it was Elvis Costello. More recently, it was a TV or movie scene, I think from Star Trek: The Next Generation.
  5. This would last approximately 10-20 seconds.
During these episodes, I could and would walk, talk, eat, sleep, drink, and be merry. That was actually the most curious thing about them -- they didn't always occur during times of particular angst, which, admittedly did strike me as a little odd for anxiety attacks.

More recently (the past couple of months), the episodes began occurring more frequently (ultimately once or twice a day) and were coupled with a ringing in my left ear. Those changes and something intangibly tangible (the ringing) took me to my doctor. My primary care physician mostly zeroed in on the ringing (who wouldn't), suggested Ménière's disease, and referred me to an ear, nose, and throat specialist. The ENT looked around, gave me a hearing test (which, by the way, I passed with flying colors, despite years of aural trauma from my children), and suggested an MRI to check for small, benign tumors that often grow on nerves in the inner ear, causing ringing.

The MRI was on Monday, June 28th.

What did the MRI show?

Have you really been paying that little attention? After about an hour of lying with my head in a tube, surrounded by clanking, beeping, and Diana Krall singing "Popsicle Toes" (not an aneurysm-induced audio hallucination, by the way), periodically falling asleep (while loud, it was kind of soothing), and compiling a chronological list of all the girls and women I've had crushes on in my life, I had ten minutes in the radiology waiting room at Mercy Hospital in Portland, Maine. I wish I could remember the Family Circus and Dear Abby I read. I was then called in to see the radiologist who had read my scans. I thought, at the time, that was pretty perfunctory.

He was very nice, sat me down, and proceeded to show me the thing. He didn't know exactly what the thing was. He said it certainly shouldn't be there and that it could be an aneurysm or a tumor (one of two kinds, of course). But additional tests would be required to determine that. He thought I was going to get checked into the hospital that day (I was planning on going back to work), but the neurologist on call saw the scans as well and set up an appointment for me to meet with a neurosurgeon that Thursday. In many ways, I was relieved by that news. Everything was so sudden, I was glad I could at least go home.

I called Jamie, went to my office to get my things, and headed home. For the rest of the week.

When did you find out what it really was?

That Thursday, when I met with the neurosurgeon, he was quite certain it was an aneurysm. So we were able to put a name to it. I have since had additional tests -- a Head CT which doesn't show much more detail than an MRI but is better at showing bone/calcification (which I mentioned earlier). That was on Friday, July 9th. On Monday, July 12th, I had an angiogram, which offers the most precise picture of the blood vessels. I have to say, of all these tests, the CT was most pleasant, since it took all of 5 minutes. Though there is the whole radiation thing. The MRI at least doesn't use x-rays, but it's loud, takes a long time, and required the injection of a somewhat nasty contrast dye. The angiogram took the longest (between prep, actual scans, and recovery), requires dye, uses x-rays, and had a defined recovery period of a few days. It involves a catheter through the groin/femoral artery (insert joke about the closest path to a man's brain here).

All of that testing has led to the conclusions I've listed above about what I have.

What can be done about it?

Well, I was immediately put on anti-seizure medication to stop my episodes. Honestly, I was never that worried about those. They were somewhat nice out-of-body experiences I got to have from time to time. But just because they had been mild doesn't mean they would continue to be. Also, apparently, the more seizures one has, the more one is likely to have them. Unless/until the swelling in my brain goes down, I will need to be on that medication. Unfortunately, even after starting the medication, I've suffered a couple of seizures, so I'll need to have an EEG to help re-evaluate my prescription.

The other strong likelihood is that I will have surgery in the coming weeks or months. Exactly what that surgery will entail is somewhat up in the air. Because of the complexity of the size, shape, calcification, position, etc. of the thing, intracranial (the kind with cutting) surgery is likely. Once they get to it, the options including clamping it off, clipping and removing it, and/or possibly bypassing the blood vessels using a temporal blood vessel (i.e. in my temple) as a graft. There is also an endovascular coiling technique (done from within the blood vessels, similar to the angiogram), but I may not be a good candidate for that. I think of it like a BP junk shot. That procedure would certainly be less invasive, be less dangerous, and have a shorter recovery period.

At this point, now that I have all these test results available, I am still consulting with various doctors to determine the best course of action.

But shouldn't something be done now? Or yesterday? You're freaking me out!

Thanks for the concern, but calm down. The neurosurgeon said that if I were 90, he'd say I shouldn't do anything about it. But I'm not 90. I should be so lucky, I suppose. There is always the possibility that the thing will rupture. But that's been the case for the past ten years. I just haven't known about it. And while the likelihood of something catastrophic happening does increase as time passes, the odds are pretty slight. It's all a numbers game, and I'm certainly more comfortable taking a little extra time to figure out the right thing to do and the right people to do it, rather than going in to take care of it just for the sake of taking action. It isn't exactly something I want to have done more than once (though that's always a possibility as well).

What can you do in the meantime?

I am on strict bed rest and wear a helmet all the time. I am also on a liquid diet, because chewing could create a Catastrophic Cascading Mandibular Reverberation (CCMR).

Of course, I'm kidding. Though I do wear a helmet -- it's called my skull. I also apparently have a tiny second skull around the thing (lucky me). I've been advised against any strenuous activity (so I have had to withdraw from this year's Lumberjack World Championships). Otherwise, I'm working (which is pretty sedentary to begin with), I'm picking up my kids, and I'm doing some pretty basic exercise (yoga, Total Gym, elliptical). In a way, I'm in training.

What can I do?

For some of you, I know this may be startling news. It certainly was for me, but I've also had a few weeks to digest. I've found that everyone needs to process in their own way. So feel free to become as reflective as is useful for you. There's nothing like something like this to make us feel helpless, so I appreciate the desire to help me and my loved ones. I don't necessarily need more medical advise or second opinions (I have about four of those). But I have been and continue to appreciate everyone's good wishes and kindness. The greatest gift the thing has give me is seeing how much support I and my family have around us.

Logistically, my mother-in-law has generously offered to take care of the kids during the surgery. And my parents are thankfully planning to come for the surgery itself and my recovery. My sister-in-law has been a huge help with the kids and provided much-needed time away for Jamie and me. Local friends and co-workers have provided me with one of the things I need most right now -- distraction. This blog is in part meant to do the same, so contributions through Comments are a boost. I think this FAQAKA pretty well covers what's going on, but, certainly, if you have additional questions, let me know.

Otherwise, from now on, as I said, I'll probably be a little less clinical and a lot more philosophical. So gear up for that. You can sign up for e-mail updates at the right, RSS feeds at the bottom, random Tweets, and a few Facebook updates here and there (mostly to link back to the blog for new entries).

Take care and be well.


  1. Thank you for the update. A good friend of mine has been on seizure meds for a number of years now if you want to talk about it with him. (My) Jamie and I are thinking of you, Jamie and the kids. Big hugs!

  2. Just wonderful Ken! You managed to make me laugh out loud several times...not an easy task considering the subject matter. I think it's helpful for everyone who loves you to be kept informed about what you're going through and to see that you're handling it with grace and humour.

  3. One question you left out of your FAQ: why haven't you yet written a book of essays, a novel, or anything along those lines? I was stunned by your news but still couldn't help laughing out loud as I read about it. Yet I NEVER laugh out loud when I read! Not even when I read David Sedaris! I hope you get better quickly but I also hope you will keep on writing when you get well...

  4. Super smartly written and funny blog, Ken! I think you've found your second calling (not having an aneurysm, writing)...

  5. Ken,
    I loved your blog. I will look forward to the next entry. I think you need to keep updating your "Totally Achievable Bucket List." It looks like they are all done!

  6. If - by your 'MRI-Shirt' you mean that one with the metal's quite smart looking on you! Thanks for putting all of us at ease and giving us a laugh...we owe you one!

  7. Hi Ken! Thanks for blogging about 'the thing' (note that one of my friends dealing w/ a rare form of lymphoma named his condition 'shit head' then abbreviated to 'SH' for political correctness). The FAQs were informative & entertaining....pretty cool talent you have there! Know that positive thoughts are headed your way daily :) ~ Carol

  8. This comment has been removed by the author.

  9. I love your site. Please know, you (an your family) are constantly in my thoughts.

    You didn't ask my opinion on a blogspot name...but if you did, I would have told you that "ilovesweetpotatoefries" worked to my advantage. (yummy!!) It's hard for me to bring you semi-colons. Wait, let me try....

    Many people are praying for you; supporters will follow your journey.

  10. Ha! You made me laugh - though not out loud (as I did (snorted, even!) when I discovered your much older posts on boogers and other such things. You're funny. But I've always known that.)

    I'm glad you're keeping such a good sense of humor about your thing. Aren't you happy it's not in your right lobe? Also happy that you're explaining all of this to us. Helps us process this as well.

    Admittedly one of the hardest images that I'm trying to process is Kenny shorn of all hair, which they'll undoubtedly have to do for whatever solution you choose. And just what will it look like when it grows back...?

    Glad you're getting the care you need. Also glad to count myself as one of those friends who are family. I love you, Kenny!

    Sending you good vibes...

  11. I am a random person that just happened to stumble upon this blog (from a link in a friend's instructable)... your story has inspired me and I would love to know what has happened since this post. Well wishes to you and your family.