If I Only had a Brain

The diorama I made for Mike

One of my best friends, Mike, a guy who I have know forever, who has been a wonderful source of support, love, and humor throughout this whole AVM ordeal, has the best heart of anyone I know. He is the kind of person who will give you the shirt off his back. Hell, he'll even give the shirt off his back to the guy who stole his only other shirt. If I had to choose someone for my team in a rumble, or to hold on to my life savings, it would be him. A few weeks ago, Mike, a healthy guy in his early 30s, woke up in agony, aware only that something catastrophic was happening. His roommate called 911, and they got him to the hospital in record time. Like me, Mike was unaware that he had been born with a teeny physical defect hidden deep below the surface. That night, his heart basically exploded. This is something that people rarely survive, but one pacemaker and a few valves later he is miraculously still in this world. I have always thought to myself that my brain was a little better that those belonging to other people, and I still think that Mike's heart is unrivaled. We make quite a pair, the two of us. Next Halloween, we are going as the Scarecrow and the Tin Man. Why do these random defects strike with such irony? Thank you god for letting us keep Mike. Thank you Mike, for everything.

"Patient has a small AVM in the brain" Part IV

I demand an addenda to the radiologist's report, and call him for several days until he finally breaks and returns my call at 8pm. It's a war of attrition, and frankly, I have come too far to just surrender now. For his part, he is apologetic and very nice on the phone, though I still think the first report was unforgivably inadequate and unprofessional. It would seem like precision of language would be key in this situation, and that the specialized skills of the radiologist, and the mandate that he and he alone interpret the images, would result in a less laissez-faire assessment. I ask him to bring up the films on his computer while I have him on the phone, and he tells me that the nidus of AVM has shrunken to 9mm by 4mm. This is a reduction of about 50%. My anger towards the radiologist is replaced by gratitude, and relief begins to settle in. About thirty seconds after I hang up I realize that this means that I still have an AVM. That nothing reduces risk except obliteration. That risk is cumulative. That I am getting closer to that 'average age of first bleed' statistic. That I have begun another year exactly were I started the last. When I told my husband that the AVM had shrunk, I actually broke down and started sobbing in the middle of our kitchen. It was hard to explain how I could feel both so happy and so devastated at the same time. More than anything, there was just this overwhelming wave of exhaustion. Tears of joy never tasted saltier.

"Patient has a small AVM in the brain" Part III

I finally get the radiologist on the phone again after a second holiday weekend, he wants copies of my MRIs from last year. I assumed this was for comparison purposes, so that his report could include what he observed about changes (if any) to my AVM. I bring all my old films up to the hospital, and wait around at the records window for an hour reading some tattered waiting room copy of Family Circle (it's like "Highlights" for adults,) waiting for them to copy my CDs. I ask them to page the radiologist, I am told that he is just a few doors down. He is told that I am waiting for him. 45 minutes later, I am told that the doctor said I did not have to wait, because he was not going to emerge. Considering he probably decided that he was not going to talk to me as soon as he heard I was waiting, taking 45 minutes to intimate this information to me seemed excessive. Several more days pass. My regular doctor (who is a doll) calls me, and tells me that he has the report, and it says......wait for it....."patient has a small AVM in the brain." I was so pissed off I could have eaten nails. This is what I was waiting for? This is what I have just paid god-knows-how-much for a specialist to tell me? Could anything be less precise, or more subjective? It took me less that five minutes to look through the films, with no medical training, to determine that "Patient" indeed had an AVM in the brain. Two weeks later, the only new information that I have is that said AVM is "small." Well, great! Thanks for your expertise, but the only "small" AVM is the one that is inside someone elses' brain. All other AVM's are a pretty big deal.

"Patient has a small AVM in the brain" Part II

So, I rush home, the roads are covered in snow, it's almost midnight, and the pre-MRI xanax had long worn off. The first thing I did when I got home was load the CD in my computer, I don't think I even shut the front door. I click through 43 images and then, there it is. The AVM who I have only seen in pictures, but could recognize instantly. I open a beer. I feel like I am trying to interpret a home pregnancy test: 'is it a little shadowier? Are my eyes playing tricks on me? Should I get another MRI, just to be sure? Did this thing even work?' The next day, I call the hospital and my doctor to ask if the radiologist has made a report yet. I do the same thing the next day. And the next. Then there was the long 'holiday' weekend. (Cue festive music and joyous...um, despair.) On Tuesday, I get the radiologist on the phone. He wants to do another MRI. (Repeat from beginning).

"Patient has a small AVM in the brain" Part I

Ok, now that I have shared my happy news about the incredible shrinking AVM, I feel I have to share my frustrations with how I actually found out about said shrinkage. My surgeon recommended a follow-up MRI one year after gamma knife surgery. Let me just say, it was one very long year. I wanted to schedule the MRI a few weeks early, when I was on break from school. That way, if the news was not good, I would have a whole week to be splayed out on the couch in an incoherent, alcohol-soaked sobfest. It's just good planning. I found that it was poor planning to be diagnosed with an AVM and be told I needed brain surgery during law school finals, so I guess it just comes from experience. Anyhoo, I went for the MRI, and the tech refused to tell me if I still had an AVM (they know but won't tell!) He insisted that the radiologist had to read it and do the report himself. From experience, I knew that this meant that the AVM was still there. Techs are all too happy to take the wind out of the radiologist's sails when it's good news, but I have never met a tech who wanted to pull the rug out from under a radiologist when the news is bad. The only time an MRI tech actually says, "we're not allowed to read the MRI," is when something is not right, so I guess it is pretty much the same as if he read it. I am not a radiologist, but I did stay at a Holiday Inn Express last night, so on my way out of the hospital, I ordered up a piping hot copy of the films on CD, and went straight home, only stopping for a 12 pack of Heineken. In case of emergency, remove cap.

Major Shrinkage!

"Shrinkage" is a word most people...well, shrink away from. Without belaboring the point our friend George is making above, there are other examples of shrinkage that are equally unsettling: the "shrinkage" of my jeans (read, expansion of my ass) ; my 401K; personal space, ad infinitum. But in the same way that not all growth is good (see, e.g. : student loan debt; ass issue, supra; impatience, etc. ), not all shrinkage is bad. I am happy to say that I recently had the pleasure of finding out that over the past year since I had Gamma Knife surgery on my AVM it has shrunk from almost 3cm to 9mm x 4mm! Wooohooo! I have not had any real negative effects from the surgery at all. Though it has not been a walk in the park, relative to others I know, I have been extremely lucky. I will fill in the (irritating) details about how I finally found out about my epic shrinakage in a future post. Right now I don't want to do anything to 'minimize' the sweetness of the moment.

Botoxic Avenger

My dear fellow neurologically challenged compatriots, a word of warning... Although just a few months ago I was singing praises to all things Botox, but I feel I must add a crucial caveat: Botox is a wonderful tool for dealing with residual effects of facial paralysis, like asymmetry of features or expression, tics and muscle twitches and spasms. HOWEVER, much in the same way that all haircuts are not equal, neither are two different Botox treatmets equal. As some of you may remember, back in the summertime, I discovered that my insurance would cover Botox treatments for the neurological problems in my face. My wonderful neurologist gave me some injections, and my left eye opened up to the same size as my right, the left side of my forehead was rendered as smooth as the right, my eyebrows were leveled with each other, and the little twitches were eliminated. The only thing he refused to inject was my chin, where a crumpled dimple the size of my thumbprint had appeard on the right side of my chin. I had read that crumpled chin dimples could be fixed with Botox, but he seemed to think this would not work for me. I didn't believe him. I wanted more.

Then I moved. I did not have a new neurologist, but I did have a friend of a friend who worked at a plastic surgeon's office. I ran into her at a party, and she told me to come on in, they would fix me right up. After all, if a nurologist was good at Botox, I thought a plastic surgeon would be even better. He even agreed to do the chin, "No problem," he had said. No problem until the effects began to show. I am guessing that people who have had paralysis to part of their face likely have a good deal of muscle atrophy, which means they would need fewer units of Botox to relax the muscles. Instead of opening up my left eye, the injections closed it even further, my upper eyelid was heavy, and my left eyebrow sagged well below the right. This was not the worst part. The injections did not fix the dimple in my chin, it actually made it worse, and so much Botox was injected that for four months, I could only smile with the left side of my moulth. On the left, my lower lip could not even strech below the edge of my front teeth, which meant that when I spoke, ate or chewed gum, I would bite my lip with such force that my canine teeth pierced my lip through and through on several occasions. It was constantly purple,bloody, and swollen (thus making it more prone to future biting.) I saw a friend soon after getting the treatment, who, knowing about my AVM, became very alarmed and thought I had had a stroke.

This was almost as traumatic as my post radiation hair-loss bad hair cut. Almost. After all the progress I had made, all the physical therepy, here I was with self imposed pseudo Bell's Palsy. I am not sure if it has completely worn off yet or not. I don't really know what I am supposed to look like anymore. I am not back to the way I used to be before the initial paralysis. I look strange, I feel hideous, and I am desperate for more Botox, but this time from a neurologist.

Well, this is awkward...

Like running into someone you once dated, who one day, without explanation, just stopped calling. Everything seemed to be going so well, and then--Poof! You see him at the farmers market one Sunday morning, walking hand in hand with someone who is not you, buying flowers for their table, or some stupid arugula for the salad they will later prepare together, and maybe you just want to snatch their Venti lattes and scald the smugness right off of their pretentious little life. Believe me, I understand, but please, before you cause a scene, hear me out and give me a second chance! It's not you, it's me!

Doing the blog was really getting me down. It was a very long year, filled with periods of deep anxiety and depression. The more I thought about or talked about the AVM, the more anxious and depressed I became. Waiting 12 months to have my first post-gamma MRI, with no (medical) encouragement was driving me mad. Every day I feared that the gamma knife was not working, that I was going to have a bleed...I had to stop thinking about it for a while. Like a prisoner, I had to do my own time. A year has passed, and I am eagerly awaiting my appointemnt to ge before the parole board (otherwise known as the MRI tech, radiologist and neurologist.) I am hoping that they will give me life.