Part VI

Allow me to introduce my neurosurgeon.  And talk about the various treatment “options” I faced.  I find it amusing that people would ask/comment that I had had “elective” brain surgery, but ask you’ll see, I found I had no choice but to treat my AVM.

Perhaps I should back-track and talk about how we arrived at brain surgery as The Choice.  All the websites and the research I’d done on AVMs thus far yielded 3 options on AVM treatment: embolization, radiation, or microsurgery.  Because each AVM is unique in size, location, and involvement of blood vessels, and because each patient is different in age, ability, and health status, no two AVMs can be approached in the same manner.  Some are completely inoperable, while others are relatively easily corrected with little side effects.  It all depends.  That’s where Dr. Zager came in.  Dr. Hart could diagnose me, and even tell me the options that were widely available, but it was Dr. Zager’s expertise that allowed him to look at my MRA and MRI scans and say I needed brain surgery.  He also said that embolization would be used in conjunction with the craniotomy. 

What I love about Dr. Zager is that while he is truly a skilled and great surgeon (look at me, alive, typing, working, etc!), he was also completely honest.  He said that because surgery was his specialty, he looked at the AVM from a surgeon’s standpoint, and also the approach of HUP.  He said quite candidly that if I’d gone to the University of Pittsburgh Medical Center, or Jefferson University Hospital, they would likely recommend radiation, aka stereotacticradiosurgery, aka Gamma knife, aka Cyberknife, because that’s their specialty.

And if I hadn’t trusted my surgeon, I had already read all about radiosurgery, and read enough to know it wasn’t what I wanted.  Not that I wanted a craniotomy, of course.  In radiosurgery, they aim a narrow beam of radiation at the targeted trouble spot (the AVM).  They do this over a period of time, depending on, of course, all the variables mentioned above, and hopefully, over the next few years, the blood vessels in question close up and the AVM disappears.  In order to be so precise with the radiation beam, they screw a metal frame into the head, ‘cause you’ve got to hold still even more than for an MRI, or they might zap the wrong blood vessels. 

The downsides to radiation are that results might not show up for several years; and meanwhile they’re zapping healthy brain on the way into the AVM.  Ouch.  Radiation has long-lasting effects.  That’s why a few treatments can close off an AVM over several years.  Unfortunately, any side effects or deficits resulting from the radiation may also persist for several years, and it’s not unheard of for people to develop new symptoms (from the radiation, not from the AVM itself) years after their last treatments.  Just ask a cancer survivors who has gone through radiation.  It changes the structure of the cells permanently, and can have chronic effects. 

Next up for consideration is embolization.  Essentially, the procedure involves threading a teeny catheter up through a groin blood vessel and into the brain (or wherever the AVM is), and inject a substance to close off the blood vessel where the AVM is, mimicking an embolism, as might occur during a stroke.  Sometimes they inject glue, or a plastic substance; other times they use coils to shut off blood flow.  As the blood vessels are shut off, depriving the AVM of its blood supply, it becomes smaller or goes away.  In my case, Dr. Zager wanted to do an embolization first, to shrink my AVM, which would then make it easier for him to do brain surgery.

Brain surgery, aka craniotomy, is exactly what you think it is.  Of course, no one could really prepare me for what the side effects and or consequences could be.  Just as each AVM is unique, so is each surgery, and each subsequent recovery.  Due to the size and location of my AVM, Dr. Zager could try to predict where I might have deficits, but it was little more than a (highly) educated guess.  My AVM lived its happy tangled life in my right brain, near the area of the motor strip controlling my tongue and face.  Therefore, surgery would mostly likely affect gross motor control in the left half of my body, maybe some balance issues, or more.  He did assure me that since the left brain is the hemisphere controlling language abilities, that I would not get aphasia; more likely it would be dysarthria, a speech impairment characterized by slushy articulation because the muscles or nerves of the speech-producing body parts aren’t as strong or able to produce the quick movements we usually need for speech.  That was a huge relief, actually.  Having studied Broca’s and Wernicke’s aphasia in my psycholinguistics and psychology classes, I knew I needed none of that.

Broca’s and Wernicke’s are so-named for the physicians who discovered people with these odd deficits.  In the case of Broca’s, Dr. Paul Pierre Broca discovered similar impairments in two patients who had lesions to the same part of the brain, specifically the  posterior inferior frontal gyrus of the left hemisphere of the brain.  Neither patient had fluent expressive speech, but both retained the ability to understand virtually anything said to them.  Of course, back in the 19th century one had to wait until autopsy to find out which part of the brain had been eaten away by syphilis or shattered by a railroad spike, but when he compared the two brains post-mortem, he discovered this region, and assigned the ability of fluent speech to it. 

Wernicke’s area, in the posterior part of the superior temporal gyrus of the left hemisphere, was discovered to be responsible for understanding speech, also by studying patients who presented with similar symptoms and deficits.  This is called fluent aphasia, because a person retains the ability to speak fluently, but the speech may be filled with jargon or just not make any sense.  For example, “I went to the breakfast, but it was too kleton for me to go diving.”  People also have tremendous deficits in the comprehension of speech. 

Having too much knowledge can be a dangerous thing, when one knows about aphasia and acquired language impairment.  I was very grateful my AVM was in my right hemisphere!

The fourth option, which was discussed but not considered in my case, was doing nothing, or “watching and waiting”.  For people with very small AVMs which are not causing any problems and not appearing to grow, this may be a good option.  For people with large, inoperable AVMs, or AVMs which involve major blood vessels, for whom surgical intervention would certainly endanger their lives, watching-and-waiting may be the only option.  In my case, we had evidence from my case history that my AVM was making trouble (causing tongue seizures), and had grown (the seizures were now taking part of my face, too).  So surgery with embolization was chosen.

I was given the opportunity to choose my own surgery date.  Because my AVM had not bled yet, and I was on medication to control the seizures, I was not in any imminent danger of a bleed.  Over time, the risk of a bleed increases, about 2% a year, but waiting a few months was not going to change my risks in any drastic way.  Of course, now that I knew what was inside my head, and what it was capable of, I felt like I was a walking time bomb.  I needed to have the AVM taken care of, so I chose June 21, 2004, giving myself a week to tie up loose ends after the school year ended, and the whole summer to recover.  All the logistics were figured out.  I needed no more tests until the actual surgery, so all I had to do was sit back, relax, and prepare myself emotionally for the reality of brain surgery.