Acoustic Neuroma
"And I know what I have to do now. I gotta keep breathing. Because tomorrow the sun will rise. Who knows what the tide could bring?" - William Broyles Jr.
What a beautiful philosophy this can be if you allow yourself to realize the power within the words. I also love it because I am not passionate about the phrase "my new normal" sure it has some truth built-in. The truth in that phrase is that your life post Acoustic Neuroma will probably not be the same, but you can find equilibrium. A new normal if you will. I just cannot help but associate victimization to that phrase. Maybe this comes from my dad; he broke his neck diving into a pool when I was very young. My dad has been a quadriplegic for 35 years, and in that time he has had to endure more shit than any person ever should. But if you were to talk to him today, he is always, always, a guiding light. He is always strong. He is always looking up. He just keeps breathing. Not once in my life have I heard him embrace victimization even though he has been on more than one occasion. He builds and renovates housing for other people with disabilities that they do not have to suffer the way he has. He built a house of welcome and love to which everyone is always invited. He is an inspiration and my admiration. Like he I too would get a chance to embrace a shit life event that will affect every day of my life. I only hope that I can love and embrace this opportunity with the same grace and dignity as my dad.
March 2014
Elizabeth and I were in the car driving to the grocery. She was driving and I was reading something on my phone. My whole life, short of riding King's Dominion's "The Grizzly" back to back 13 times in a row, I never got motion sick. Today though something came loose and it started months and months of motion sickness. From that moment forward my vertigo would not stop. Some days better than others but nonstop. This followed with strange eye fatigue, and soreness(nystagmus). Then I started to have a lack of concentration, and presence of mind. Ultimately capping the whole ensemble off with off-balance feelings, often actually leaning and stumbling. Once without thought or recognition I drove through a solid red light, nearly escaping a dump truck that was crossing through the intersection. I went to the doctor, and was promptly diagnosed with vertigo. Rest and it should come back around. NOPE. I returned and was told my B12 was low, so shots and supplements would surely fix me this time. NOPE. Nothing seemed to help. I would lie in bed at night, and I knew I was dying. I knew that what was wrong with me was in my brain and it was killing me. Often I wondered at 2 am while watching Elizabeth sleep, if I had lived a life I was ok with. I wondered if I had made peace with any loose ends, or how my wife and family would continue on without me. Not that I am some linchpin or anything, I wondered just how could they ever exist without me that sort of thing.
September 2014
After having gallons of blood sent to labs and enough b12 injected to boost a rocket, all of which had zero impact on my symptoms, my soon to be former GP suggested I go get my brain checked. At the time I worked a schedule that had me off Sundays and Thursdays. I scheduled my MRI on a Thursday and pre-planned with the neurologist to hear back Monday if they received the results. I am sure I do not have to tell you how alarming it would be to receive a phone call Friday morning that the doctor needed to see me that day. I would imagine for anyone who had not already been contemplating their own demise, this call probably would be a real shit yourself moment. I do not want to sound like I was not scared, but I had known something was seriously wrong for awhile at this point. So we went and sat with the doctor, he pulled up images of my brain and in the middle if the image lit up my life's change.
What I had is an Acoustic Neuroma. About the size of a golf ball just behind my right ear, inside the brain cavity, but not technically a tumor on/in the brain. Specifically they grow on the nerve bundle from the inner ear to the brain. They are also nerve sheath tumors so they grow on the thin outermost surface of the nerve. The best news though is that they by nature are not a cancerous growth. It usually caused by a mutated gene in the 22nd chromosome that suppresses tumor growth, so basically I am a mutant and therefore I am an X-Maaaaan? X-Men? The good doc sent me to a neurosurgeon and he said "yikes, wtf is that?" That does not make you feel any better. He said he could not help me, but there was a guy at USC K.E.C.K. Dr. Friedman and that I should go see him. What an opportune moment this was, as I later found out Dr. Friedman basically wrote the book on Acoustic Neuromas. At this moment I knew I was going to be ok.
Not to be overlooked, at this exact same time Elizabeth was also diagnosed with Type 1 diabetes. How about that kick in the nuts? While trying to race around to doctors appointments, work, dog, Elizabeth is trying to sort out why an autoimmune disorder has her now stabbing her fingers all the time, stabbing her stomach, tired from the sugar in her system. What a fucking month.
November 2014
Not one to miss out on a coupon, Elizabeth had a "save $.50 on your next purchase" that was burning a hole in her pocket. And at a final bill of $300,000 the doctors were also eager to get me wheeled into that Operation Room. So we scheduled my operation for November 23rd and off we went. Euthanasia is a weird thing; it is almost a form of time travel. I remember being wheeled into the OR and commenting about how cold it was in there, and poof I was gone. The next nine hours for me would be over in seconds. The world continued on without my presence. I imagine this is how death will be. Just nothingness, just a empty as before our births. What little affect we have on the cosmos, our deaths will be the same. But a topic for another time perhaps.
Nine hours later the doctors tell Elizabeth that we are all tidied up, and I am in the ICU, and that they cannot be 100% sure until post images are taken to compare before and after whether they removed all of it. Images come back fine and it appears that they have gotten all of my invader. Now before hand we were told that until they got inside and saw what was going on in there they could not say for sure the outcome of my balance, hearing, or facial nerves. Before drifting off to la la land, I had my hearing tested and had perfect hearing for my age. During the procedure they had to sever the hearing and balance nerve on my right side to remove the tumor, and boy did I notice something was off the moment I woke up. This was the first time during the entire process Elizabeth or I cried. I lost my hearing and that was tough.
First of all, I had about an inch square chunk of my skull removed and "chucked into the trash" brain matter squished all around and instrumentation jammed inside. But when I woke up, my fucking arms hurt so badly. When I woke up they asked me how my head felt and I said something along the lines of fuck my head why do my arms hurt so bad. On a scale of 1-10 they were a 46. I later found out it was because I was in a crucifixion pose for basically the entire procedure. I also could not understand why my tongue felt like it was 4 times the size it was before surgery. That was because they forgot to put the bite block in my mouth and brain surgery can cause you to bite down hard. And I did, nearly through my tongue. But I do not remember most of the first day or so because they had me doped up, on steroids and morphine. I do remember almost falling out of the bed once. I remember cussing the nurses every which way from Sunday. I remember being hungry as hell too but hospital food is just that. Soon I would have my catheter ripped from my man bits, in one quick swoop, not fun. But I would be back on my feet-ish within 4 days. I was able to walk enough down the hallway to prove I was strong enough to head home. What a trip mistake that would be.
The next few weeks would be challenging, I spent the next few days in a dark quiet room trying to figure out which way was up. My in home nurse aka Elizabeth was phenomenal. She was keeping everything running while also doing everything for us. But then the headaches came, like tidal waves of pain. I do not know if there is language to describe the pain. It was as if my brain was being ripped from the skull. But in swift jerking movements repeatedly over and over again. The most intense acute brain pain. Ugh after all of these words none of them are getting it right it was indescribable. To maybe put it into perspective I was taking 1200mg of ibuprofen and it was not helping in the least. I do not like taking narcotics, whole topic for another discussion, so I was trying to just use OTC stuff. Then we called the doc and told him about the headaches to which he informed us that the aspirin restriction was only for the first couple of days after surgery. The first aspirin changed my life. Suddenly the headaches subsided and my life started to return. The next few weeks I worked hard at physical therapy. Training my brain to learn how to get my balance back on track from the data on the functioning left side. But I did it and was back to work three months later. All in all my recovery was smooth and without complications. Others have had it much worse, the brain could leak fluid requiring additional surgery, facial paralysis depends on what the tumor has done to the nerve bundle. Chronic dry eye, which reminds me, I cannot cry out of my right eye anymore.
My hearing -
This is a tough subject and one I struggle with today. But I have learned so much at the same time; I have learned patience, anger, understanding, gratitude, frustration, perspective, and a glimpse of the value of life. I love music, all kinds. Not that awkward I do not want to offend you, so I say "I like all music" when you put on music in your car kind of way. I LOVE MUSIC! But unfortunately because of my hearing loss, some music is no longer enjoyable. I find this to be true more about fast paced, loud music. This has been very difficult for me to accept, my hearing has changed permanently and the changes are profound.
Your brain does so many wonderful processes in the background that you never notice it is remarkable. Things that I am absurdly more aware of now, they include:
Directional Identification: When you hear a bird in the trees while walking in the park; your brain subconsciously triangulates the sound based on the millisecond differences in time it hit your ears to tell you where the sound originated. I no longer have that ability. But what is really fucked is that because it is a subconscious process your brain still assigns direction to sounds which are rarely correct anymore. Finding squeaks in your car are the source of a lot of aggravation.
Brain Fog: This one is the easiest concept to understand. My brain has had trauma. It also was on this planet for 33 years getting information from my senses reliably that entire time. Suddenly after 9 hours that data stream was compromised. I was not getting hearing input, or balance information, my brain suddenly was working overtime to compensate for the loss and like any overworked muscle it fatigues. The brain also will then prioritize functions and be even worse at multitasking. With that exhaustion comes a whole host of challenges. Your capacity stay awake drastically changes. Your memory recall is poor. Your balance is total shit. But the worst part has to be your ability to clean the house on Sundays between 1p and 8p are totally out of whack.
Hearing clarity: This was one of the most frustrating and amazing things post surgery. A lot of people with SSD (single side deafness) struggle to hear. This seems simple right duh you are deaf in one ear. But it is way more complicated. I find myself asking people to repeat themselves all the time. I am not asking anyone to do so because I did not "hear them" it is what I heard did not make sense. If Elizabeth is in the kitchen and I am not paying direct attention whatever she said it would be misunderstood. For example she might say something like "what time does the show start?" But I would hear "find the mouse pad" and since that makes no sense at all I would need her to repeat what she said. Why this happens is another amazing thing our brains do that we never notice, but the concept was shown to all of us just a few weeks back with a viral phenomenon "laurel/yanny". The way our brains interpret words is by their frequency patterns. So a word like Cat/dog have an assigned frequency pattern stored in our brains and when our brains recognize that pattern you "hear" cat/dog. Well if the sound pattern is not known or damaged as the case with laurel/yanny your brain assigns it a word with a similar frequency pattern that it thinks might be what it heard. Amazing! Imagine now your brain cannot hear the patterns because it is overworked, the sounds are not heard as well as they once were, and you are not exactly paying attention to what someone is saying to you. That is why I hear “find the mouse pad”.
Tinnitus: The ringing in your ears. I now have permanent ringing in my right ear. You would think that being deaf would be silence. And I suppose there are different causes of deafness that would have slightly different symptoms; I would imagine a conversation with someone deaf from birth would prove quite interesting. I hear pops and thuds from time to time. I am sure they are just electrical signals from my brain hitting the damaged nerve end. The ringing in my ear has been explained like the static a speaker makes when you turn the volume all the way up on a stereo with no music playing. Your brain recognizes the lack of sounds coming in, so it turns up the volume. Again think back to the fatigued brain, or noisy environments the brain cranks that shit up to 20.
That is a lot to deal with, and can often times be overlooked because it is not a visible disability. I have learned a little bit of patience and perspective because of all of these things. People have been rude to me because what they perceived as me ignoring them, I once had a lady yell at the top of her lungs “I know you can hear me!” Nope, I actually did not. But her perception is that I was ignoring her and that would have been quite rude of me to do that, so while her actions are not admirable, I understand why she was offended by my actions. So I informed her that I in fact could not hear her, and she quickly went on her way. This by no means is a way to say that I am perfect. I often get frustrated by the loss of my abilities but I made a conscious decision while lying in that hospital bed days after my surgery. I noticed the tinnitus was a 24/7 nuisance and the doctors told me that it may subside a bit, but it was always going to be there. I told myself to acknowledge this fact and embrace it because if I focused on it, it would drive me mad. This is another amazing thing about the brain. You can control your thoughts and how you react to them. You are in control of your actions.
"And I know what I have to do now. I gotta keep breathing. Because tomorrow the sun will rise. Who knows what the tide could bring?” - William Broyles Jr.
On the face of it, this message is about moving forward. Something I am passionate about, but to me it is more about acceptance and ownership. The power is inside all of us to keep moving forward, but without personal truth, ownership, and acceptance these are just words on a page.
I have thought about writing this for a while and now here it is. I hope someone may have taken a little something from it. Thanks for taking the time
Love,
D&E
