Tuesday, July 22, 2014


It’s now been 20 days since I had my brain fixed. Which I typed as ‘fidex’. Which is one of the odd post-brain surgery kinks that I am still discovering and hoping will vanish soon. But Alhamdullilah, time has just flown by. And yet, also, I still feel very much recently invaded and glue rocked.

I tried taking myself off my heavy duty pain meds 5 days back, in the hope that I could manage without them to do the remaining Ramadan fasts, and also, preempt any dependence on these potentially habit-forming happy pills. That was quite an interesting wake up call. Till then, I was pretty sure that my surgery was no big deal, and I was quite recovered. But without a 4-times daily influx of barbiturates, hot damn did I feel poorly.

Like, whoa. Amazingly weird headaches, sharp eye pain, strange squeezy feelings in my brain, plus full body ache and shocking fatigue. The first day off the pills, I couldn’t get myself out of bed till I’d clocked over 12 hours of sleep. The second day, I did a solid 11, and I think I also took a 3 hour nap in the day. The third day, I tried replacing my barbiturates with a barrage of OTC pain pills. Max doses of Panadol and Aleve just took the edge off it and barely got me through the day. And then, on the fourth day, not even the total quota of Panadol and Aleve could dull the pain in my head enough to let me sleep, so I took one of the barbiturates. And the next day, I had to do it again. Sigh.

I know, taking your prescribed pain pills is nothing to be ashamed of, weak, or immoral. I just don’t like to be dependent on meds, especially for pain, which I find my body tends to acclimate to in time anyways. And plus, I think I’m just always the kind of person who is very much wanting and willing to believe I’m cured and better. I don’t need anything. I’m fine. There’s nothing wrong with me. Etc. (Which is, on a side note, why I always take it very personally when people imply that I’m a hypochondriac or it’s all in my head. Cuz punk, I did not fabricate my lab results and diagnoses, and any given week I soldier through what would knock you flat or send you running to the ER.)

So now, I am ‘taking it easy’. I surprisingly took the full extent of my medical leave, till July 22nd. Plus I have permission from my boss to work from home till the Eid break ends in 13 days. I just popped in to the office today to sign some forms and show my face, so they know I’m here, alive with new and improved rock brain, and back on the job – albeit, with limited eyeball battery life and energy. Also, cuz I am a nutter with guilt issues and the great kindness they have shown me in facilitating my surgery has left me feeling extremely indebted. So I will work from home on the book the office is still waiting on me to finish and intermittently respond to emails and edit requests. And when needed, I will take my barbiturates and not beat myself up about it. Scout's honor.

In the meantime, I am hoping my brain stops throwing a fit about its perimeter being breached after 31 years of impenetrability and the installation of outsider in its midst. The headaches, exhaustion and speaking/spelling/writing issues I’ve been having are harshing my chill. I’m a writer, I have to at least be able to get words close enough for spellcheck to swoop in and save me. Lately, she’s as lost as I am. If Microsoft Word, my near constant companion of the past 12 years, could speak, she would, in the voice of Sarah Vowell, say: “Dude. I cannot even begin to fathom what you are attempting to spell there. Do you want me to switch to a Klingon dictionary?” The doc says the pain and weirdness should subside over time, as my brain adjusts to the 10mm glue rock left behind in my brain and my body recovers from the intensity of having two large catheters thread through my circulatory system. I’m just impatient and slightly delusional.

But again, I am also extremely grateful. I could have died. I didn’t. I could have had brain damage. I didn’t. I could have suffered loss of vision in my left eye from the procedure. I didn’t.

I’ve just got to wait out the healing process and Inshallah I will be back to my usual mildly maflunctioning self soon enough.

Monday, July 7, 2014

The Things One Finds On Youtube....

One of my science writer fellows is the neuroscience writer for The New York Times and she sent me a video explaining the mechanics of Onyx embolization, if you are so inclined. Have it it.

I Present To You, The Newest X-man: Rock For Brains

Good news: I live!


I had the Onyx embolization procedure of my aneurysm last week and now in place of an aneurysm, I have a 10mm glue rock in my brain. I shall henceforth be known as Rock For Brains. Yes, I am finally a Real Pathan. :P

I guess I should share all the interesting stories. The day before the surgery, I had what is called an angiogram to give the doctor an updated image/map of the aneurysm. I've had one before. They're not fun but not a huge deal. They sedate you, open up your femoral artery, thread a catheter through your circulatory system up to the base of your brain, where they release dye and then take contrasted pictures. Or something like that.

In this instance though, because they were going to open up my femoral artery the next day anyways for the actual aneurysm treatment, when they finished, they didn't stitch the opening closed. They just put pressure on it to make the body suck it shut, so to speak. That usually works fine. But me being me, I don't get to do anything the usual way. So when they finished the procedure and I completed the supine recovery, the time came to stand me up and see how I was doing before they discharged me. There were two parts to this challenge: peeing and not bleeding. I passed the peeing one. I failed the not bleeding one.

Yep, my femoral artery popped open mid pee test, resulting in my life's second and hopefully last "Hey This Looks Like A Horror Movie I Once Saw" experience. My leg was cascading blood. Like a slow red waterfall. "Ok. Ok. Ok. You're bleeding. Just stand up. Flush the toilet. Wash your hands. Clean up some of this blood. You don't want to scare the next bathroom user. No. No, never mind. You're bleeding on what you need to be cleaning. Just get up and get out of the bathroom. Who cares if it's rude to leave the toilet unflushed and covered with blood! They will deal with this." So I stumbled out and said "Uh, nurse. I'm bleeding." And she said "Why yes you are!"

I had great nurses and this one was the best. She was this tall, broad, wry Queen Latifa, with braids. She picked me up and set me on the gurney and tried to stop the bleeding by..... crushing the artery shut. Manually. So I had Nurse Dorothy squeezing the life out of me for 10 minutes before she decided it wasn't working and she had to call in The Marines. The Marines in question was the 6'3 kindly countryboy who I guess was the interventional radiologist or head nurse or something - I never did find out exactly what he did or his last name, just that he was The Stuff and named Danny. Danny applied his version of the Jaws of Life to my artery and managed, with bone crushing compression action, to get me to stop bleeding all over everything. "I am so sorry. That is definitely going to leave a mark." And it has. But Alhamdullilah.

I went back to our hotel for a night and then the next morning, I was to have The Real Deal - Zee's Brain Repair.

The aneurysm embolization procedure is endovascular, so the doc went in from the same femoral artery opening. The angiogram the day before had revealed that my aneurysm had an aneurysm - called a daughter aneurysm - resulting in congratulatory messages to our folks about their new grandparent status and one from Zeba saying "Ha! Your aneurysm had kids before you did!" Aside from the need for us to start saving up for a tiny deadly jehaiz/dowry, having a daughter aneurysm meant that my aneurysm was working towards a rupture. The weak part of my artery artery that bubbled out to make an aneurysm had it's own little weak corner that was stretching my already compromised tissue further. So, not great news but didn't change the plan of action.

And that plan was to go in from the femoral artery opening with a big and special catheter, enter my brain, there inflate a balloon below the aneurysm, and then pump the aneurysm full of Onyx - a type of surgical glue made to become solid on contact with blood. When the Onyx hardens, then they deflate the balloon and evacuate my brain. Mid-way through the procedure, I was woken (though I have no memory of this) to check for paralysis, brain damage and loss of sight. Alhamdullilah, I have none - at least none that I didn't have before anyways. :P So the aneurysm was defused before it could rupture and I suffered no brain or nerve damage, Alhamdullilah. Alhamdullilah. Alhamdullilah.

While they were in my head, the doc discovered that I had developed a second daughter aneurysm in the 24 hours since he had checked last, which means I was very very close to rupturing. I probably would not have made it another week without the aneurysm popping. Classic Zee, cutting it so close to the wire. I did have a scare when I came out of the OR, as apparently, when they took out all the tubing they had in me, they badly scraped/bumped my throat and sinuses. I woke up in the OR recovery area feeling the steady flow of blood down my throat, and scared that it was coming from my brain, decided the best way to get medical attention was to shout "Guys? GUYS? GUYS? UM, I THINK I AM SWALLOWING BLOOD. IS IT POSSIBLE THAT YOU CUT ME AND THIS IS COMING FROM MY THROAT?" God knows why the word 'nurse' did not come to mind, and why I become so polite/legalistic when facing medical emergency but I hope the nurses can laugh about it.

The next thing I know I was violently vomiting blood everywhere, which I proceeded to do for the next few hours. It ended up taking 12 hours for the bleeding in my throat/sinuses to stop, during which time I coughed, gagged, vomited, and sprayed blood in gradually diminishing amounts. My thoughts during one of these bloodbaths? "Hehe, it's like I have Ebola. WAIT, DON'T TELL THEM THAT. THEY MAY QUARANTINE YOU." You see, my brain, beyond being a suicidal jerk, is also quite an idiot. Anyways, when I was taken to my own ICU room, Mali finally was able to see me, and with huge eyes in a pale face, said "you look beautiful." I was laughing and calling him a liar when my mom came over and revealed the extent of my movie monster visage: "Your lips, teeth and face are covered in dried blood. We'll try and clean you off." They ended up keeping me in the hospital for 3 days till the bleeding in my throat and sinuses slowed enough to be a non-risk - but I suspect it was really to prevent rumors that the zombie-pocalypse has come.

Now, for the next 6 months I'll be on the blood thinners plavix and aspirin to reduce my risk of stroke, clots, etc, so I've been told to avoid smashing into things. That lasted about 2 days. Furniture, walls, and doorknobs are out to get me. I am considering making myself a bubblewrap suit of armor. And after a day of wondering why my brother has an indoor firefly infestation, I have realized that these are the visual auras/distortions that the doctor warned me about. I keep seeing bright sparks shooting past, lending me unnecessary dramatic special effects to things like brushing my teeth, which should go away in time. I'm also on a barbiturate for the migraines from my incensed and possibly still swollen brain but am up and around, shuffling, (a bit zombie-like, I admit, but I promise I don't crave BRAAAAAINS) around to reduce the risk of clots in my legs.

I will probably fly back to the US in 6 months for an angiogram to see how the Onyx has settled in, and am due to have other checks at the 1 year and 2 year mark. As far as long-term prognosis goes, the doc says I have less than a 1% chance that these Onyx filled aneurysms will recur or rupture, but a fairly significant chance I will have another aneurysm elsewhere in the years to come, on account of the vascular fragility I have from Ehlers-Danlos Syndrome. I am hoping though, that my brain has learned its lesson and will stop trying to kill me, as that is a very poor way to get attention.

So that, Inshallah, is the story of the time my brain tried to kill me and we fixed it by putting rocks in my head.

The End.