As many of you know, just over 5 weeks ago a MRI revealed a tumor in my head. Just over 4 weeks ago, I had the tumor removed and incredibly, I am already able to write this.
When the symptoms of my problems started, I can’t really say. I dealt with many issues that I just thought were normal, that can be direct side effects of my condition. Nervousness, anxiety, problems with memory and focus, snoring / sleep apnea, fatigue / insomnia, shakiness are all things I experienced. I have also had a monumental history of concussions and many of these same symptoms relate to CTE or Chronic Traumatic Encephalopathy.
One of the problems that gave me pause, but I wrote off as getting older and not being able to drink like I used to, was my balance issues. There were multiple times in the last couple of years where I would drink with friends and I would fall over. Now this may seem like it happens, but for those of you that know my friends and I, I was usually the dependable one. I’ve always had pretty good balance as I played hockey, snowboarded and skateboarded most of my life. I was usually the one that you least had to worry about.
The climax of everything I had been going through happened on February 10th, 2018. I had been having some drinks at home and watching TV. I went to let the dog out and took a step back to close the door. The cat ran under my feet and I fell backwards. I missed grabbing a hold of anything to stop my fall and slid down my basement steps, backwards, landing on the concrete below. I knew I had a concussion, but as the days went by and the post concussion symptoms dissipated, I started getting extreme neck pain, throbbing headaches, depression and debilitating anxiety.
About a month later I went to a primary care doctor as I was not getting better. Unfortunately, she was not very helpful at all. She listened to what I had to say and gave me very little options as to what to do to make things better.
After that, I decided to try a chiropractor. She definitely helped me out, but I would go in for an adjustment and I would feel better for a couple of days only for everything to come right back to where I was. After maybe 6 sessions, nothing was progressing. I spoke to a friend and he recommended I see a different chiropractor. So finally in September, I decided to give him a shot. Unfortunately it was much of the same as far as results are concerned. However, after about 5 sessions, he recommended me to a pain doctor who specializes in neck problems.
The pain specialist listened to what I was dealing with and asked on a scale of 1-10 what kind of pain I was dealing with. Now through this I was covering up the pain with Excedrin Migraine. I informed him that when I was on that the pain medication it was probably a 5, but without it I was probably at a 7 or 8 and flare up episodes it was definitely a 10. I was on Excedrin Migraine ALL THE TIME just to be able to have a life. The doctor said he would give me a steroid shot in my neck to see if that helped and then schedule a follow up for 2 weeks. Him spraying a numbing agent on my neck and the shot did help. The pain decreased mightily and I was so happy that things were looking like they were getting fixed. Unfortunately, that lasted about 2 days.
In the mean time, I tried to live my life. I went out with a buddy to celebrate his birthday and came home early due to me not feeling well and I again fell. This time coming up my concrete steps. My friend Doiron mentioned to Mikey that maybe I have some sort of neurological problem. Little did we know.
Two weeks later I returned and let him know nothing had gotten better. We scheduled an MRI and he figured that it was either a herniated disc or the bones that stick out from the back of the vertebrae where rubbing on each other. The solution for those were a precise steroid shot in my neck, possibly multiple or if there is bone on bone, I would get nerve endings burnt off to relieve the pain.
My MRI was scheduled for Monday the 22nd and I was to come back to see the pain specialist on Tuesday afternoon the 23rd. After coming home from the MRI, I was contacted by the office and told that the doctor would like to see me as soon as possible. As I had an appointment scheduled with him the next day, I knew the news could not be good.
As you can imagine, on the drive down I was freaking out. There were a host of emotions running through me. Scared, nervous, but most of all, I kept thinking, “what the fuck could this be?”
When I got to the office to talk with the doctor, he informed me right away that I had a tumor in my head. It was something I couldn’t even be scared of right away. I just wanted to know next steps on how to fix this. He even kept asking, “Do you understand what I am telling you?” I understood, but there was no use in doing anything but to figure out where to go from here. He recommended me to a neurologist and I was scheduled to see him the next day.
Once I went home, I finally had time to be scared. Tears welled up in my eyes every time I explained to people what was happening. I broke down.. a lot.
The next day I went to see the neurosurgeon and found out how serious this really was. My tumor was about the size of a large cherry, but seeing the fluid that it was excreting on the MRI looked like a damn baseball. I found out that the tumor was probably a hemangioblastoma which is highly vascular and was what was causing my pounding headaches. This tumor accounts for only about 2% of brain tumors. The fluid excretion was pushing on my brain and cerebellum forcing it down into my spinal cavity which is called a Chiari Malformation. This was the pressure that was causing my excruciating neck pain and causing my balance issues.
I told him about the falls when drinking and he said that I saw it most then because I was quite coordinated and having my issues on top of alcohol just exacerbated things. Believe it or not, I was actually very lucky to fall down those stairs that night.
He said the next step is emergency brain surgery. Hearing those words come out of a surgeons mouth is like a punch to the gut. All the air just goes out of you. He said that if I had said that this pain just started within a week or a month he would be taking me to the emergency room to do surgery instantly, but since I had been dealing with it since for 9 months it must not be growing exponentially. A Craniotomy Surgery was scheduled for the next Monday, Oct. 29th to remove the tumor and fix the Chiari Malformation, but I was to go to the ER immediately if things got worse.
The wait was horrible. I had to stop taking my Excedrin Migraine as it’s an NSAID and can’t be taken before surgery due to it thinning your blood. He prescribed me Tramadol which didn’t help the pain as much and upset my stomach.
I had to go get another MRI. This time for my head and see a primary care physician to do blood work. He gave me Vicodin which was better on my stomach, but didn’t kill the pain as much as I wished. There were multiple times of me puking just due to the pain which would put more pressure on my head and leave me in a ball on the floor clenching my whole body and sweating.
Due to the pain, I was pretty much bed ridden for those days leading up to surgery. I couldn’t eat much food due to the pain and also the pain of opening my mouth too wide to chew. Luckily I had great friends in Mikey, Doiron and Rachel to help me through it.
Surgery day was a blur for me. I remember talking with my aforementioned friends and my parents. What was said, who knows. I remember my dad telling me about waking up from his last surgery and asking when they were going to start (you will not do that after brain surgery) and tearing up as they were rolling me away towards the surgery room.
The next thing I know, I was waking up from surgery. I was in an incredible blur. I remember seeing my parents, Rachel, Doiron and Mikey. I don’t know much of what was talked about, but the pain and pressure in my head felt so much better.
That night was the worst of my time in the hospital stay. I was not able to raise my head at all. I was told by the nurse I had to be on my back at all times and the bed was as hard as a rock. I asked if she could do anything as I think my back hurt more than my head at this point, only to receive a no. Multiple times I dropped my morphine button, having to yell to get her attention to help me. One time she had to weigh me in the middle of the night. Why? I have no idea, but she removed all my blankets and those air compression devices that go on your legs, weighed me and left. Freezing, I had to give my all to yell and get her attention. “I’m sorry. I must have forgot.” was all she said.
Every hour the nurse would come in to look at dilation of my pupils, take my blood pressure, ask me the date, my name, how to spell it. I couldn’t drink anything. So to cure my thirst all I could have were ice chips.
I was to lay flat for 24 hours. Luckily the neurologist came Tuesday morning to let me know I could at least lay on my side. He said my CT scan we had done looked good, but noted that I had been dealing with the Chiari Malformation since before my last CT scan which was over 7 years ago! I got to drink juice and water FINALLY! The pain was actually quite manageable. Laying and staring at the ceiling was much less so, but my nurse got me my phone and I could text people and read articles, although my concentration was about zero.
Tuesday evening I was able to be raised up in my bed. I had never been so happy to sit up at least a little. They said I could sit up myself if I was able to, but trying made me extremely dizzy and intensified my headaches. That wasn’t happening.
Wednesday morning a physical therapist came to visit me. First she said we were going to sit me up on the side of the bed. As she helped to raise me up and me having a firm grasp on the rails of the bed, the dizziness was intense. I felt like I was going to fall over sitting in bed! Luckily taking it slow, this subdued and with help I was able to raise up and make it over to a chair. This was my first time out of bed in 40 hours!
A few hours after being in the chair, I got up to walk with the use of a walker. I managed to make it to the bathroom to wash my face and brush my teeth. The physical therapist came back in the afternoon and we went for a little walk together. I still used the walker as I was still dizzy and my balance was off, but I was determined to get my legs back under me.
Wednesday afternoon they moved me out of the ICU and to a less restrictive hospital room. I didn’t have people checking on me every hour on the hour anymore. So I was able to rest. Rachel brought me some sushi, chips, cookies and a soda. Having real food and some carbonated drink does wanders for your stomach.
Thursday morning the neurologists assistant came in early and said I was doing amazing. He said that it looks like I could even go home today provided I do well with the physical therapist. She came by about 11 and we went for a short walk. I was able to do it without the walker, but I was still moving really slow. I had to focus on my steps and look straight ahead, but I made it. She said she would sign off on me being able to go home and I just had to wait for the neurologists approval. The waiting was horrible as I was ready to rip out my IV’s and make a prison break, but luckily the nurse finally got a hold of him and I was able to be wheeled out.
The car ride was intense even though Mikey took it nice and slow. You’re just still so dizzy and everything is moving way too fast. Once I got home Doiron helped me up to my room and I was finally able to lay in my own bed. Rocha (my dog) was ecstatic to have me home. Doiron and Mikey got me some nice greasy pizza and I could finally relax!
Since that time, I have progressed immensely. I started by taking things slow and was very tentative in my walking. I walked always having myself braced on something. I slowly moved to walking normally and a week to the day from surgery I took a 1.5 mile walk with Rocha. I was able to drive with in 7 days and actually drove myself to get my staples out. This was more of a having pride that I could do it myself than necessity. It was nice to be able to be self dependent.
A month has now passed and although I look 100%, I am not there yet. My balance seems to be completely back. I can walk and even jog normally, but simple things can be exhausting. It took about 3 weeks for the headaches to finally go away. Emotionally I’m not back to normal yet. I still have depression and anxiety and can have crying spells. My concentration is not totally back, but I have been playing word puzzles to help with that.
I had my follow up MRI yesterday and from here, I will see the neurologist again on Dec. 4th to make sure everything is good. It just takes time. They say it can take 3 to 6 months to feel “well” again and up to 12 months for my skull to heal. So probably no snowboarding this winter unfortunately. I just have to be patient and I know am extremely lucky to be were I am at today.
Here is a before and after of my head. The white spot is the tumor and the black is the fluid it was excreting. That’s my Cerebellum that is squished beyond recognition. I’m surprised I could walk or talk.
I want to thank everyone who took the time to come see me in the hospital, send me well wishes and bring me food. You people are the best. Me, being a stubborn ass, has a hard time asking for help, but it’s great to know that it’s there for me without having to.
Like my friends for setting this up.