Justin David Phillips

 

 

IT’S A BIRD, IT’S A PLANE, IT’S…A ‘BENIGN’ BRAIN TUMOR!

Justin David Phillips

Born: October 28, 1975

Diagnosed: February 20, 2007, Age 31

Surgical Resection: Translabyrinthine Approach May 1, 2007 – Toronto, Ontario

 Home: Winnipeg, Manitoba,  Canada

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Let me preface this by saying that I truly believe in fate and what happened to me was meant to be. I have experienced every emotion, which a human can have some I liked but most I didn’t. Staying as positive as I could throughout this entire experience was very important to help me through the struggles of being told “you have a brain tumor…but it’s benign?” (Is that supposed to give me comfort?)

 

I have chosen to share a recent picture of myself and my family. I specifically chose this picture to introduce you to my wonderful family who has supported me through this entire ordeal. That is the MOST important part of this whole experience, which needs to be taken advantage of. The support from your family!

December 2006

 

I first started to get ringing in my left ear in and around December 12, 2006. I had gone to the Gun’s ‘N’ Roses concert with a friend of mine. I figured the ringing was from the loud noise but it continued into the week. I decided to visit the doctor at the walk-in clinic as I couldn’t get an appointment with my GP. The doctor examined me and said I had an outer ear infection and he gave me antibiotic drops to fix this. Sarah (my wife) helped me with the drops for a week to 10 days but nothing changed, the ringing continued and my ear felt like it was plugged.

 

Never try to self diagnose yourself on the Internet. This could be the worst thing you can do to you general psychological health. I was on the Internet many times throughout the day and diagnosed myself with every possible disease and illness. This was doing more damage to me than the ringing or hearing loss I was having.

 

My ear continued to feel plugged and ring until Christmas and into the New Year.

 

January 2007

 

I was starting to get really concerned with the ringing (which was really irritating) and the rapid loss of hearing in my ear. After seeing my general practioner I was finally referred to an ENT specialist. A friend of mine is an ENT in training so he was able to help get me a very quick appointment. It didn’t help that while waiting he spoke to me about the possibilities of what I could have, based on my symptoms but I chose not to think about that.

 

On January 22, 2007 I met with Dr. B at the local general hospital. I had a hearing test, which went sour, and based on my symptoms and hearing test results Dr. B prescribed a drug called Prednisone. This drug was a steroid, which I had to take for 2 weeks to try and stop and hopefully reverse the rapid hearing loss. Dr. B. immediately ordered an MRI which was scheduled for February 5, 2008. That was such a long three week wait. I had a schedule family trip to New York to visit family prior to all of this happening so we went on with the visit to try and avoid dealing with this issue. It was very hard on my wife while we were away with her having a stressed out and sick husband, a 1 year old who was also sick with a fever. This proved to be more than we expected and our tourist days were cut short.

 

February 2007

February 5 finally arrived and I had my MRI. I am so happy I am not claustrophobic because with my head being in such a confined space and the load noise it could have caused more problems than the stress of the tinnitus or not knowing what was wrong with me.

The hearing loss did not improve and the tinnitus continued. I continued to research on the Internet, which only kept stressing me out.

 

I met with Dr. B on February 22, 2007 with my wife and sister. My nerves were acting up and based on my symptoms, research on the internet, discussions with my doctor friend, I was sure I was not going to get any good news. The nurse asked me to go into the examination room. My nerves of steel were now turning into Jell-O. My wife and sister joined me and in struts a young, pregnant doctor (resident) with my MRI photos. Now you would expect a student to wait for the doctor to come in and discuss the ‘findings’ but not this one. She decided to post the photos of my head up on the light board and started to say “I think that is a lump or growth in your ear canal. I am not sure but it looks like an acoustic neuroma. Let’s wait a minute for Dr. B. and see what he says.” How am I to react?

 

Dr. B. finally waltzed in and examined my MRI photos. As mentioned so gracefully by the student doctor, Dr. B. confirmed that I had a medium sized acoustic neuroma in my head “but it is benign”. It is a lot to take in when you’re told you have a brain tumor ‘but it is benign’! Is that supposed to give me comfort or something? Yah I am extremely happy it is benign, but where is there any good news after I was told I had a brain tumor. I thought I was fairly strong during the conversation but am very glad I had my wife and sister there because I wasn’t hearing (not because I was going deaf in one ear but because I was in shock) to anything the doctors were saying. All I could think about was the problem, not the solution. Once I gained my composure Dr. B started discussing my options to remove this tumor. He mentions both surgery and radiation and expresses to me to do thorough research on both and ask lots of questions. He makes himself available anytime to answer my question. Although he does not do surgical resections anymore he mentions the great team in Toronto which consists of a duo that have specialized in Acoustic Neuroma’s for over 25 years. Together they have performed over 1000 of these types of surgeries. That sounded promising. He also referred me to Dr. W (neurosurgeon) at the local hospital to meet and discuss my options from a radiation treatment perspective.

 

For two months I had no idea what was going on with me with the hearing loss and the tinnitus. Dr. B put an end to that by giving me reasons for my symptoms. This ended up relieving me of an enormous amount of stress. It sounds strange but I probably had the best sleep that night than I had in 3 months since my symptoms began.

 

 

 

March 2007

I flew down to Toronto and visited Dr. N’s office on March 8, 2007 and he explains both surgery and radiation, but because of my youth and health that I should make it through surgery without any complications. Here is my thought…surgery removes the tumor, radiation doesn’t. It MAY shrink it and there are no long term results from the GK radiation. I am 31 years old with a long life ahead of me. Doesn’t seem to be a difficult decision but it is! Everyone has their preference but I had a feeling I knew what treatment would be best for my physical and mental health.

In my 31 years on this planet I have never really had any serious health issues. I had my appendix out when I was 20, wisdom teeth pulled shortly thereafter, a broken foot, some bruised up knees, but none of those issues messed with my mind as much as this one.

 

I never thought I would ever need to see a psychologist but I took the leap of faith and made an appointment. You don’t need to be ‘crazy’ to see a professional like this. It was someone I could talk to outside of my circle of friends and family. A non-biased opinion on my situation. Since my surgery I have not had to see him but he helped me put everything into perspective in life and that really helped me with the big decision I had to make.

 

 

April 2007

I met with Dr. W at HSC. There is no question that surgery didn’t seem to be of interest to him in our discussion. It was quite obvious he was pro radiation and that was something I was not leaning towards. My wife Sarah and I asked a lot of question about radiation but also tried to get as much information about surgery. He wouldn’t even tell us how many of these surgeries he has done which in speaking with other doctors didn’t seem to be many. In all my research and talks with the medical community, every avenue has said that you need experience handling this surgery, no question. It could be the difference of life or death.

After this appointment it was quite apparent that I was going to have surgery. I was going to accept Dr. B’s referral to have surgery in Toronto with the most experienced surgical team in Canada that do this type of operation, Dr. N (ENT) and Dr. R (neurosurgeon).

 

 

Air Canada flight AC 268 to Toronto for the surgery.  The worst and best flight of my life!

I had made a decision that before I left for Toronto I would try and make this the best day I could. I woke up with Kaelyn (our 2 year old) and shortly thereafter Sarah woke up and joined us in the family room. We chatted a bit and then got ready to go for breakfast. We stopped at a restaurant on our way to my in-laws new farm. We went directly to the stables next door where Rhonda was riding her new horse, Hark. Kaelyn was sleeping in the car with me while Sarah helped Betty clean the horses. Kaelyn put on her new glasses and cool hat and we trekked off to find, mommy.

 

I was able to ignore the ringing in my ear for the most part. It is funny how your mind adapts to this horrible noise. It seems as long as I kept myself busy the ringing was “not” there. Yahoo!

April 22, 2007 was the last day in Winnipeg for a few weeks. As the day went by I felt much more anxious in leaving my friends and family for my surgery. Although I was thinking it, no “good byes” are said, rather “see you later”

Upon our return home I packed my bags and Sarah made a lovely dinner, chicken and broccoli. It doesn’t sound fancy but it was delicious and hit the spot. We chatted as I could see Sarah was tired and upset. I reassured her that everything was going to be fine and we would soon be together again. After dinner I played with Kaelyn which I could have continued to do if I hadn’t been on a schedule.

My sister, Sarah and her boyfriend Ian came over to the house and we hung out and chatted before I was picked up by a friend of ours who happened to be travelling to Toronto as well. These were the people that I stayed with to recoup post op before flying back home.

There were a few tears which are shed prior to my departure, but I assure everyone that “I’ll be back” Unfortunately my sister Sarah was not able to join my wife Sarah, daughter Kaelyn, dad Alan, and mother Diana at the time of surgery but she was in my thoughts.

 

I was quite anxious about the surgery. To top the day off I asked for the Globe and Mail on the plane ride and on the front page is an article about patients being alert and awake during surgery but not able to tell the surgeons this. This didn’t help my nerves but it did give me a few more questions to ask at my meeting with the anesthetist.

 

I had a variety of emotions going through my head while I was travelling, anger, frightened, nervous, sad, and exhaustion. I just wanted this to be over. I remember thinking “In less than two weeks I will be on the road to recovery. I can’t wait.”

 

I left a week earlier because I had to have some pre-op check up and tests which included a balance test, hearing test, blood test, and physical test. I spent this week hanging out with some friends, hanging out at the hospital, doing tourist things and anxiously awaiting my wife, daughter, dad and mom’s arrival. My dad was flying in from Fort McMurray, Alberta and my mother was flying in from London, England. We all had a few days to spend together before the surgery so we made the most of it and went to Niagara Falls and a few wineries in the area.

May 1, 2007

Today was D-Day. Surprisingly I had a decent sleep. Maybe knowing this was finally going to be dealt with gave me some calmness. Who knows?

 

Sarah and I woke up early as we had to be at the hospital at 6AM. We got ready and I said, “See ya laters” to my daughter and mother. We met my dad down in the lobby of the hotel and made our way to the hospital.

 

It was quite quick. Upon arrival they checked me in and asked me to go change into a gown, had me put on some white tights up to my thighs and take some pills (these pills were for swelling and other various things.) My dad and wife then joined me and they wheeled me up to the surgery unit. I gave my family hugs and then went in.

 

While laying in the hallway I waiting to get started the nurse asked me if there was anything I needed. “Get me some popcorn and a cold beer” I said. Trying to use humor to calm my nerves all I could think of was I needed an excuse to get up and have one last bit of privacy before I went to sleep. “I need to use the bathroom,” I said. Hoping that I could walk to the bathroom, those hopes were dashed when the nurse said he had to wheel me down in my bed. Finally I had some privacy (even though I didn’t have to go) I had a chance to take a few deep breaths, say some encouraging words and then wash my hands and face and get back onto the bed.

 

While waiting for the surgery Dr. N and Dr. R met with me to discuss any last concerns or questions I may have. I find it quite amusing that Dr. N has his coffee in his left hand and pen in the right. He then begins the conversation with jokes and tells me he wants to give me his autograph. Confused I say yes and he then comes towards me and signs his name on the left side of my temple. He just wanted to make sure he operated on the correct side so he signed off on it. Funny guy! Following Dr. N’s comedy act the anesthetist wheeled me into the surgery room. She asked me to get onto the surgery table and then started to poke me with needles. I remember looking at the clock and seeing 7:47AM and thinking “this is going to be an uncomfortable 6 hours, I am glad I am not awake!” and the next thing I remember I am waking up. All I remember is hearing someone call my name and cameras flashing. I thought I was dreaming. Later I found out that there was a documentary being filmed on one of the nurses attending to my surgery. To this day I still haven’t found out what the outcome of that was. I was really groggy from the medication but I do remember being in ICU shortly after waking up with my family there visiting. For me it felt like I went to bed for the evening. For my family it took forever. My surgery ended up taking 10.5 hours. The tumor was really adhered to the facial nerve and the doctor’s main priority is to conserve the facial nerve. They were monitoring throughout the entire resection and were very meticulous in removing it. I am glad they did because they removed the entire tumor however and saved the facial nerve.

 

I woke up with some facial palsy on my left side which was due to annoyance of the nerve while removing the tumor. Dr. N whispered in my good ear to tell me this and then boldly said “It is just temporary and will come back in 6 months, be patient”.  I knew I would lose the hearing in my left ear, but this was a shock, even though I knew it could happen.

 

Dr. N and Dr. R both said that they could not tell me what to do, radiation or surgery but they both agreed that based on what they saw in there and the difficulty in removing it, I had made the right decision in having surgery, and that radiation would have only prolonged the inevitable, which was surgery. This would have made it much more difficult to save the facial nerve due to scar tissue.

 

Now the healing process starts…

May – June 2007

 

 

The first 4 weeks post surgery I seemed to be really exhausted. But I pushed myself and started to walk around my block, about 1km. I am such and impatient person. I was tired of sleeping all the time, but that is when the body heals the best, at rest. I missed playing ultimate Frisbee and going out for beers and wings after. I missed being myself. I look back now and wonder why I tried to do the things I did, such as renovations on the house, playing ultimate Frisbee, trying to jog. I guess that is the stubbornness in my personality. I even wanted to run the 10 KM Canadian Brain Tumor walk/run5 weeks after surgery. Well I didn’t complete it then but I did complete it this year, 1 year later. (However I fell and broke my 2 fingers, but that is another story for another book.) J

 

My facial paralysis had not gotten any better. I went and saw a physiotherapist about 8 weeks post op but she admitted to having absolutely no experience with facial therapy. She gave me a few exercises to do but I didn’t see any improvement. I didn’t want to damage anything during healing so I stopped. . I contacted the hospital I had my surgery at in Toronto and they referred me to a facial therapist in Winnipeg.

 

 

Conclusion

 

As I write this I am 15 months post op. For all intense purpose I am back to my normal self. I have some facial palsy (only to those who know and of course I notice) and sporadically go to a facial palsy physiotherapist. I find it very hard to be consistently doing my exercises but with family, work, part time small business, and going back to university it seems impossible, but I really do not care what other people think. The only reason I would want my face working to the extent it was is if I want it to. I’m kind of used to my ‘new’ self.  

 

I am working again and even started my own business. I have continued my active lifestyle by playing ultimate Frisbee, running (I ran the 10km brain tumor marathon and a 10km relay this summer).

 

My wife Sarah and I had the excitement of a new family member join us in July 2008, a healthy baby girl named Emily Ruth, and of course my 3 year old little princess Kaelyn Maureen. 

 

I know I am a stronger individual due to this experience. I will be able to educate my daughters on living every day to the fullest and not to take advantage of their lives. They are precious and they only have one chance. Anything can happen at any time.

 

As a result of this life changing experience I realized life is way to short to put challenges and new experiences aside. You have to live every day to the fullest and prior to this experience I seemed to always think that I could push things aside and ‘do it later’. I now have a top 100 list of things to do before….and it is great when I get to tick one off.

 

As long as you go to sleep at night with a smile on your face then you’re heading in the right direction. I didn’t think this way before February 22, 2007. A day I will never forget, yet never speak of again.