The Quiet Before the Storm


I showed up the day of surgery in the early hours of the morning with my mom, my sisters and a check in hand. The hospital was still fairly empty, much like the roads at that hour. You may think that I must have been nervous, but I was surprisingly calm. The admin checked me in and then a nurse escorted me to the preparation room. The room was pretty large, with beds lining both sides all the way down. Each bed was still empty; she took me to the nearest one on my right and gave me instructions to get dressed into the gown and cap on the bed, put my things into the bag provided, and then climb into the bed. Then she left and pulled the curtain around the bed to give me some privacy. I did everything she told me to and then got into the bed. The blankets were really warm, I was pleasantly surprised. I think they do that on purpose, to make you feel cozy and comfortable…relaxed.

After a while my mom and older sister Jessica came in to visit with me. They explained that I am allowed visitors, but only two at a time. We sat for a few minutes and talked, though I cannot remember what about. Because of the anesthesia, I don’t really remember anything that happens roughly 15 minutes before I lost consciousness and 15 minutes after I regained consciousness…or so they tell me.  After we talked my mom gave me a hug and said she would go and let my sister Lauren in. Lauren came in and gave me a hug.  I’m sure we talked about something, but again I can’t remember what about. And after that, I just remember waking up in the ICU.

My bed was next to the window, the blinds were open and it was dark outside. I remember a nurse coming over to check-in on me. She asked me how I was doing, and then ran me though a whole banner of tests. She asked me to smile, blink, squint, raise my eyebrows, stick out my tongue, squeeze her hand; she asked if I could feel her touch my toes, she checked my eyes. This happened every hour for the entire night, and what a night it was. Every time she came to check on me she shined a light right in my eyes, what a way to wake up. I vaguely remember the nursing staff having to give me different IV’s and injections during the night as well; plasma, insulin, and a host of other things that I can’t remember exactly.

Sometime in the morning Dr. B came in to check on me, he ran me through some of the same tests. He smiled really big when he saw that I could smile and had complete control of my facial muscles. Facial paralysis was his greatest concern from the beginning. He told me to relax and rest up, and that he would check back on me the next day. “Hey”, I said. “How long was my surgery?” “13 1/2 hours”, he said. “Wow”, I thought. I was glad that the surgery went well, granted it was a little longer than expected. I wanted to revel in that thought, but honestly all I could think about at that moment was how annoying my IV’s were. I had five total; one in my right hand, three in my left hand and forearm (including one in the artery), and one in my left ankle. I could barely move without tugging on one of them.

My attention turned towards my stomach when I saw what they had brought me for breakfast. Here’s a hint, the Dr. had ordered an all liquid diet for me…oh joy. Hmmm, there was jello, chicken broth, apple juice…this was going to be tough. Everyone always jokes about hospital food, but I had never actually stayed overnight at a hospital before. Things didn’t look very promising so far. After I had finished the “hospital” food, my mom came in to see me. We talked for a bit, mostly about me haha. Basically I broke it down for her like this; I was tired, groggy, in pain…but so glad to be alive!!

After some time one of the nurses came by to check on me. She ran me through all of the usual tests, and then she asked if I wanted to get up…”Uh, ok”, I said. I thought, “She can’t be serious”. But she was. So she got on my right side, and my mom got on my left side, and slowly, I got up. It was a strange feeling really. I couldn’t support my own weight!! I had never felt so weak. Even with them holding me up I was still hunched over like an old man, my legs trembling uncontrollably. My brain was looking for a signal from my right vestibulocochlear nerve, but no one was home. It was at that moment that I fully realized the task set before me. I smiled, almost in tears now. “I got this”, I thought to myself.

So Little Time


I only had three weeks to prepare for my surgery. There was a lot to do. I was renting a room across town from my parents house at the time. My mom insisted that I move home so she could look after me during my recovery. So the following weekend I helped her clear out my old room. Then I boxed up everything that I did not immediately need, called a few friends, and moved everything I had back home. After I had gotten settled in I sat quietly for awhile on my bed. It had been an emotionally draining week. I thought about all of the things I still needed to do, still so much to do…

I wanted to get in the best shape possible so that my recovery went well. Dr. B said I shouldn’t lift weights anymore because there was already too much pressure in my head. So I decided to keep doing my martial arts training, but just taking it easy, no sparing, etc. I also got back into swimming more. I had access to a swim center that I worked at. So I decided to swim 5 days a week, upping the distance I swam every day. Every time I felt like giving up I just thought about how much harder my recovery would be. That thought kept me so motivated.

Seeing how I was uninsured at the time, I had to find a way to pay for all of this. It’s crazy to think that I live in the most powerful nation in the world, yet healthcare is something that I, and every other citizen, needs to worry so much about.  My mom and I took a day off of work to apply to county services. We spent the better part of a day going into different offices, waiting in line, filling out the paperwork, sitting down to wait some more…only to be called up and told I do not “qualify”. Then they would say I might qualify for another service, and give me more paperwork and send me to another office. It was a very frustrating day, being denied again and again and again. We went home and my mom took a nap on the couch, she was exhausted. I was undeterred though, and got on my computer to do more research. All of a sudden I got a call from Stanford. The lady on the other line said I qualified under their assistance program and would receive a discount on services. I thought to myself, “Ok, that’s great. A discount is usually what? 10-20% off”. So I asked her how much the discount was. “You qualify for an 80% discount” she said. “Huh?? Come again”, I said. “80%”, she said. I was floored!! I was so excited I couldn’t contain myself!! I informed my parents and my sisters as soon as I could. Everyone was super happy for me. Looks like I won’t be in debt for the rest of my life after all.

Even with a sizable discount, the surgery was still going to be expensive. To help pay the hospital bills some of my family and friends organized several fundraisers. In the coming weeks, both pre and post-op, we actually held a total of 6; and raised about half of my quoted hospital expenses. I still needed to show up on the day of surgery with the 20% that I owed though. So we had to get a personal loan…again, I am really shaking my head at the US healthcare system.

I was pretty fortunate that my sister Lauren knew a lawyer who was willing to draw me up an advanced care directive and will for free. That really helped as I could not afford it on my own. I wasn’t really thinking I needed either of them, but it’s better to be safe than sorry. I also had to put so many things on hold, including; school, work, training…everything that I wanted to do sort of took a backseat to this thing in my head. I really don’t know how I held it together except that I had a wonderful support system, kept a positive attitude, and exercised as much as possible.

Another incredible thing happened during this time, people came out of the woodworks to help me in my time of need. And I mean A LOT of people. Family, friends, friends of family, friends of friends…even complete strangers. I really was in awe of all of these people coming together to help someone in need. It was especially amazing because you always hear about so many bad things in the news. Having something positive happen, something so close and personal to me, quite honestly restored my faith in people.

Out of Options


I showed up at Stanford Hospital with a bit of an entourage. My parents and my sisters had taken time off to come with me. I appreciated the support. I think in hindsight it was important for me to not feel like I was going through this alone. That has been one of the key factors throughout all of this, I have a great support system.

When I got called into the Dr.’s office we first met with a nurse practitioner, Rose. Rose was great. She walked me through the whole process of how the appointment was going to go. She also informed me that my brain stem was compressed by 7mm!! That was of great concern to her, because by all rights I should have been dead. We were all very surprised and concerned as well. Later I did a little research and learned that was the cause of many of my symptoms. After talking with us Rose took us in to see Dr. B. Dr. B is an Otolaryngologist, “Wow, now that’s a mouthful”, I thought. Dr. B is a tall, slender, middle-aged man. Had a firm handshake and a pleasant, confident smile. I liked him immediately.

Dr. B introduced himself and sat us all down in his office. He gave us an overview of what an acoustic neuroma is, its’ symptoms and how it’s treated. Just listening to him talk we could tell that he was very experienced and confident. The 3 basic treatment options that he went over were surgery, radiosurgery (radiation therapy), and watch and wait. Since my tumor was so large he said that I only had one option, surgery. His greatest concern was my facial nerve. So he decided that he would use the translabyrinthine surgical approach because I didn’t have any useful hearing in my right ear. He explained that with this approach they would go straight through my ear canal and drill through and remove my inner ear bones. This would give him the best view of my facial nerve, which will reduce the likelihood of damaging it, but would also leave me deaf in my right ear. A condition known as Single-Sided Deafness, or SSD. Since I was almost totally deaf in my right ear already it seemed like a fair trade…my hearing for my life.

I had some pretty serious questions about the surgery and my recovery. Dr. B explained to me that they were going to fill the hole they drill into my skull with fat from my abdomen. I thought, “He has got to be joking!!” But no such luck. I jokingly asked if they could remove a little extra from my stomach and I could leave the hospital with a 6-pack. Everyone laughed at that. Even through the toughest times it helps to have a sense of humor. Dr. B smiled a little and shook his head no. “Damn”, I said with a smile. On a more serious note though, I told him that I have some pretty active hobbies, and I love an adrenaline rush. What I was most concerned about was taking hits to the head. I do Muay Thai, among other martial arts. Would I be able to take a blow. “In time”, he said. “Wow”, I thought. “How about flying? Or SCUBA diving?” “In time you can do anything you want. The sky is the limit”, he said. That made things seem not so bad. I’d hate to think I couldn’t do what I love.

The surgery needed to happen soon, so they set a date three weeks away. The date they set was actually on my dad’s birthday, which he didn’t like very much. But oh well. Stanford is a busy hospital, so we were in no position to request a different date. As we left Dr. B’s office, my sister Jessica looked at me and said, “This is the Dr.” We all agreed.

Lost In a Daze


I sat there quietly, lost in thought, and yet my mind was blank. I was lost in another daze, not quite unconscious, not quite conscious. All I could hear was my heart pounding, all I could feel was the steady stream of tears down my face. Suddenly my phone rang and I sprang up to answer it. It was my older sister, Jessica. Over the tears I told her that I have some terrible news and I needed her to come over immediately. I only showed so much emotion when it was REALLY warranted, so she new it was serous. She said she would leave work right away and come over. I hung up and sat back down. Then one by one I went through the same conversation with my mom, then my little sister, Lauren.

One by one they came over, and over and over again I told the same story. They were all obviously very concerned. Jessica asked if the Dr. had told me what kind of tumor it was. He hadn’t. She sifted through my scans and came across a form. It outlined what kind of tumor I had and how big it was. A 5.4 cm Vestibular Schwannoma, also known as an Acoustic Neuroma. None of us had ever heard of it, so we immediately got on my laptop and Googled it. I was a bit relieved to find that it was a benign tumor and it was completely outside of the brain!! My anxiety eased a bit when I read that, and I let out a sigh of relief.

We sat together for awhile after that, just sifting through article after article. Eventually someone got the idea to see what we could find on Youtube. That was a somewhat bad idea. There were some survivor videos, they were very informative. Other videos showed actually surgeries!! We quickly put the laptop down after watching a minute of one of those videos. That was a bit too much for all of us. We sat there for awhile longer, me in a half daze now, and them trying to console me.

Not long after my mom suggested that we get out of the house and get something to eat. Anything to get my mind off of this I thought. We had lunch, but for obvious reasons I just wasn’t able to enjoy myself. After lunch we went back to my place and just spent some time together, talking mostly. As day turned into night they slowing started to make their leave. I went through my usual bedtime routine that night. It’s one of those things everyone has done so many times that they don’t even have to think. I sat in bed quietly for a short time, thinking. The following week I had my appointment at Stanford.  What would they say? I really had no idea. I was so exhausted from the day’s events that I just couldn’t gather my thoughts. I decided that obsessing over it was not helping, and would probably drive me crazy. So I turned out the lights and got into bed. I fell asleep as soon as my head hit the pillow.

Really? A tumor??


I showed up at the office of Dr. E on a Tuesday morning. It was a small practice in an unassuming office building. I was greeted by his staff, and then moments later by Dr. E himself. He was an older Chinese man with glasses and a confident smile. He asked me what was going on and listened intently as I described my symptoms for him. “Well”, he said, “first things first, let’s check your hearing”. My first thought was “great, another hearing test”. But even though I already knew my hearing was terrible, I went ahead with the test anyway. It came back just as I suspected, just like so many times before. Left ear? Great. Right ear? Terrible. So he poked around a little bit at the other symptoms I had described earlier. “You know”, he said. “This sounds like a very specific kind of tumor. It probably isn’t, it’s very rare. But just to eliminate it as a cause I’m going to order an MRI.” I felt a kind of reassurance as he said the words “very rare”. After all I thought, “when have I ever won the lottery?”

So Thursday morning I walk into the imaging center that Dr. E refers all of his patients to. The MRI went smoothly, and took about 45 minutes. It was a bit expensive, but I was going to follow through with this. They gave me the scans with a smile and I left. Later I learned that is one of the hardest things for an MRI Technician to do. See they already know if you have a tumor, if you have cancer, etc., but they can’t say ANYTHING. The Dr. has to give you the diagnosis. So they smiled. What a horrible feeling that must be. To fight back every urge that you have to say, “I’m so sorry, you have blank“.

My next appointment with Dr. E was not until the following Tuesday. So I set my scans aside and went on with my week. I’m not kidding, I didn’t even peek at them. Why? Maybe I secretly knew already, but I wanted to have a good weekend, a few more stress free days. Or maybe my brain just wasn’t working right that day. Either way I just didn’t give it much thought.

On Tuesday I saw Dr. E and I handed him my scans. He left for a moment to view them and then came back and got me. He led me down a small hallway into  another room where I could immediately see my scan up on the viewer. I could see the scan of my brain, all nice and gray on the viewer. And then right in the middle of it, a huge white mass. Before he said anything my heart dropped and screeched to a halt. I couldn’t breath. Dr. E walked over to the scan and pointed to my brain. “Here is your brain. And right here is what we commonly refer to as a tumor.” Later I would think to myself, “Dr. E’s bedside manner sucks!!” But at that moment I couldn’t even think straight. I found myself starting to cry. “You’re going to need surgery”, he said. “I’m referring you to Stanford, don’t worry, they will take good care of you.” “Sure”, I thought. “They’ll take good care of me.”

He led me back down the hallway to the front desk. Where he said he was sorry and wished me well. “Thank you”, was all I could manage to say. I was still crying at this point, though not a full blown cry. I was trying so desperately to hold it together. “Just make it out to the car”, I thought. I still had to pay my bill, so the front desk attendant told me how much. She did so with obvious empathy, it was written all over her face. After I payed I walked out to my car and got in. I must have sat there for sometime, I can’t recall how long exactly. But after awhile I knew I should drive home sooner rather than later. Driving at all in this condition can be dangerous, but I only had a 20 minute drive home and it was after rush hour. I was in a sort of  tearful daze as I drove. Thoughts ran through my mind. I tried not to think about it, but it totally consumed my every thought.

When I finally got home, after what seemed much longer than 20 minutes. I walked into the house, dead silence. No one was home. I called my mom, I called my sisters, but no one answered. I left them each a voice mail, but I am fairly certain that they wouldn’t be able to understand a word I was saying. A slurring, crying man. Ugh, how did I get here??

Losing Control


Over the course of the next four years I started experiencing many different symptoms. My hearing continued to get worse, to the point where I had lost about 90% of my hearing in my right ear. I noticed that my balance had also gotten pretty awful, at times I would stumble or even fall. I really didn’t have a way of rationalizing the loss of my balance like I did with my other symptoms. I can only conclude that by the time it had gotten really bad I was so far gone mentally that I just accepted it and did my best to adapt to it. More on my mental state during this time in a minute. Later on I began to lose the fine motor skills in my right hand. I could no longer write clearly, type efficiently or use my right hand for many various skills. I rationalized this by assuming that I had hurt my hand while training in martial arts. I had done bare knuckle boxing for some years. My reaction to this? I began using my left hand more and more. When I typed. When I ate and drank. I was hitting harder and more accurately with my left as well. It really was weird after using my right hand for so much my entire life. One good thing that has come of all this is that now I can honestly say I am truly ambidextrous.

Back to my mental state. Well let’s just say it was bad. I didn’t know how bad until after I had had surgery. I’ll touch on that in another post. Let’s just say there was a lot of cognitive regression. I had trouble problem solving, thinking clearly, and memory loss as well. I began having night terrors and would sometimes lash out in my sleep. At times I would get headaches as well. All-in-all I was pretty sick. But again, I think because of my mental state I was just not thinking clearly and could not see what everyone around me saw. Or maybe I was just scared to admit that I needed help…Did I mention that I had slurred speech as well? Can you imagine seeing someone stumbling around, has slurred speech and is acting kind of “off”? That was me. Many people thought I was drunk all the time. I would later learn that this was all caused by the tumor being so big that it was affecting cranial nerves 7-12, as well as cutting off my 4th ventricle and pushing my brain stem over by 7mm!!!! It’s no wonder I was in such bad shape. I was lucky to be alive.

When I did finally see a Dr., I didn’t do so for myself actually. My younger sister Lauren texted me one day and wanted to have lunch. So we met up a little later that day at a local sandwich shop. I remember it being a beautiful day in June, summer was in full swing, so we decided to eat outside. She mentioned that she was worried about me, that I seemed to be having trouble hearing, with my balance, with my speech. I had been keeping things to myself for so long that, I just couldn’t keep it in anymore. So I took a deep breath and laid it all out for her. She listened as I went on and on about all of the problems I had been experiencing. I began to cry as I told her that I felt like I was losing control of my mind and body. She reached out and gently squeezed my hand. She said, “Jarrod, what you are experiencing is not normal. You need to see a Dr. as soon as possible. I want you to go home after we are done and make an appointment.” I said “Ok, I will”. I mentioned to her that I was only having trouble hearing in my right ear (she happened to be sitting on my left side), and that if she were sitting on my right side this conversation would be going very differently. She cracked a smile. Till this day I still credit her with saving my life, for if it weren’t for her intervention I may have waited until it was too late. The date was June 29, 2012.

Finally Ready


I struggled for a long time on whether or not to start this blog. But since I have read other blogs on Acoustic Neuroma’s, and every experience is unique, I felt now is as good a time as any to write about everything I have gone through, and continue to go through everyday.

So here goes…I started seeing symptoms in the fall of 2008, though at the time I did not know that they were symptoms of anything, much less a brain tumor. They came on gradually, and for some reason I had a pretty reasonable explanation for each one. It all started one morning when I woke up and could immediately notice that I had lost about 50% of my hearing in my right ear. I also had a strange feeling in my ear, which I have come to learn is described as “fullness”. I wasn’t too worried at first, “maybe my ear just needs a good cleaning” I thought. I cleaned it with a q-tip, nada. I bought an ear cleaning kit from the store, but after using up the whole kit I’ll admit I was starting to worry a bit. I’ve had ear infections before when I was a kid, I knew they can cause hearing loss if not treated, but they always ached a lot and I was completely pain free. My next thought was maybe I injured something while at one of my jobs. I worked at a nightclub at the time, maybe 3 years of loud music for 30 hours a week had taken it’s toll…So I made an appointment with my personal Dr. for the next day and just went about my business.

So the next day I see my Dr., let’s call him “Dr. K”. Dr. K  checks out my ears and doesn’t see anything irregular in his visual inspection. So he refers me to an Ear, Nose and Throat Dr. to get my hearing checked. Did I mention that I had an HMO plan? Anyway, the hearing results come back and it’s just like I have been telling him all along. Hearing in my left ear? Great. Hearing in my right ear? Not so good. So he concludes that I have a viral infection in my inner ear, specifically affecting the vestibulocochlear nerve. Only later did I learn that he was right about the nerve, but the diagnosis was wrong. He prescribed steroids and sent me on my merry way.

I came in for another appointment about a month later for another hearing test. Interestingly my hearing did actually improve, though not significantly. This was enough though for Dr. K to see that the steroids were working, I just needed a higher dosage. In hindsight I can see how and why the steroids helped. The nerve was inflamed, and steroids help reduce inflammation. Which in-turn improved my hearing. Dr. K upped the dosage and sent me on my way.

I came back a month later to get my hearing checked again. Something I hadn’t really thought about had happened since my last appointment though. I had a birthday, I had just turned 24 years old and it didn’t occur to me that I had “aged out” of my mom’s health insurance through her work. I was made aware of this when the Medical Assistant informed me that my insurance was no longer valid and it would cost me some large sum of money to see the Dr. Now at the time I was flat broke, I actually worked 4 jobs 7 days a week just to make ends meet. So I declined to see the Dr. that day and went on my way. I didn’t see a Dr. again for 4 years, in 2012…