Changes ahead

I am about to start on a new journey that I would never have seen coming a few years ago. Before November 2008, I had never heard of an Acoustic Neuroma, but now it's part of my everyday life. With family and friends far and wide, I thought it would be good to give some information of how it all began. For the period leading up to the diagnosis, I was having a series of strange hearing and brain sensations. Often it would start from out of nowhere with a sudden, intense ringing in my left ear, along with some very noticeable instant hearing loss. The episodes would leave me feeling disoriented and almost like my head was under water. Conversations were hard, and I would feel a little panic because I was confused about what was going on. Initially, I figured I had just listened to much too much loud music and it had finally caught up to me. The thing that finally made me realize that the problem was quite severe was when I rubbed my fingers next to my left ear, I could not hear a thing. Clearly I had some hearing loss and the concern was that it might be getting worse.
Like all reluctant males (with medical procedures) I did eventually have it checked. My doctor, who was a star, did not brush it off and recommended that I should go see an audiologist and an ENT (Ear, Nose & Throat) specialist as soon as possible. It turned out that the hearing in my left ear was poor enough for the audiologist to recommend that I might need a hearing aid. The ENT specialist decided that it would be prudent for me to have an MRI "to rule out some things" (at that point unspecified) -- and said it was most likely just a virus that had caused the hearing loss. He said I had little to be concerned about. So I did have the MRI -- a very claustrophobic experience, and then I almost forgot about the whole thing, except for the occasional strange hearing episodes that kept happening.
Fast-forward a few months (it took awhile to get my next specialist appointment) and this time I was in for a rude awakening. The specialist sat me down and told me that I was the rare exception in these types of cases and that the MRI had exposed a mass (acoustic neuroma) that was causing the problem. The word he used was "tumor" and I remember that I had quite the adrenaline response to the news. My heart pounded and the room got smaller .... The thing that added some real complications to the whole affair was that I was on the verge of an eight month traveling stint with my family, which was something that had been planned of over five years. How was this news going to affect our plans?
The ENT specialist told me that typically I would have four options for dealing with the Acoustic Neuroma. They were as follows:
(1) I could do nothing, and simply see how it progresses. This did not seem like a great option since I was clearly exhibiting some symptoms related to the tumor and did not want to experience additional hearing loss -- which apparently was permanent. This also was not an option because I did not want it to continue to grow (no matter how slowly). In time it would become more and more dangerous to my overall health.
(2) I could have it surgically removed, but this would involve a lengthy 7 to 10 hour surgery that was very invasive and would inevitably lead to full loss of hearing on my left side. It would also likely lead to a weakening of my facial nerve causing a paralysis to one side of my face. Not good for my ego!
(3) I could endure a one-day blast of radiation. Such a high dosage of radiation in one sitting has some definite side effects. Full hearing loss on my left side was a given with this option as well as facial paralysis.
(4) The fourth option was to have "fractionated stereotactic radiotherapy". Basically, it's a much lower dose of radiation spread out over 25 treatments. The "target" is generated from using 3-D images from a CT scan, which allows for a more precise beam, this in turn results in minimal damage to the surrounding area. The treatment would be every weekday (not including holidays) for about 15 to 30 minutes. It would require that I sit for a "mask" fitting, which is used to make sure that my head is in the same position for each treatment. The problem with this treatment was that the machine for doing the procedure is very specialized and expensive. There was only one of them in the Province of British Columbia -- and that was in Vancouver. I would have to be in Vancouver for the five week treatment away from my loving family. I could, however, go home on weekends.

At that time, I needed information and by all accounts it seemed like the soonest I would be able to get appointments with specialists that might have ideas for intervention was months away. We were due to leave within the month to SE Asia. Without going into too much detail, a few friends came through for me and helped me get a crucial appointment with a brain surgeon the very next day. After some examination of the MRI, the brain surgeon was quick to say that given the location of my tumor (by my brain stem) and given the size (already close to 2 cm), he felt like he would prefer not to operate.
I had to get an appointment with a Radiation Oncologist (a cancer-radiation specialist) but it also had some serious wait list time lines. Once again the stars aligned for me; it was a few days before Christmas, so when I called the Cancer clinic in Vancouver they said normally I would have to wait for a few months but there was an opening on Christmas Eve. Apparently people like to go do last minute shopping on Christmas Eve and don't like to come for appointments ... Lucky me!
After a long bus and ferry ride at a very emotional time for the family (the day before Xmas -- the kids were super excited, and all of the adults were anxious!) I saw Dr. McKenzie at the Cancer clinic. My dear friend Cam came with me because both Skye and I could not leave the kids right before Christmas -- we did not want the kids to know yet about all this looming chaos. Dr. McKenzie basically explained to me that the tumor mass compresses the hearing nerve, which in turn causes the ringing, the strange head sensations and then the hearing loss. He said that if one was to get a brain tumor, it was one of the better ones to get because it tends to be slow growing. Best of all it is not malignant. All that said -- at my young age, it needs to be taken care of before it grows larger and causes other bigger problems.
Dr. McKenzie felt that I should press on with the travel plans, given that it was a once in a life time opportunity. He felt that the time was not too great and that on my return, he would schedule me for the "fractionated stereotactic radiotherapy" -- the best choice for me in his opinion. I went away and educated myself to the best of my ability and came away with the same basic conclusion. It was the least invasive and left me with the best chance of saving what was left of my hearing. According to the doctor, the main issues that might arise for me in the treatment phase, would be significant fatigue, some dizziness and a little weakening of my facial nerves. It tends be different for every person undergoing this treatment.

The following was involved in getting ready for this procedure

A few weeks back I went over to Vancouver for the preparatory process. This included some blood work, the making of a mask, a CT scan, which included being injected with a special dye, and a tour of the machinery. It was an intense day in that I was at the Cancer Clinic for 5 hours, and it was the first time I really felt like a patient. Added to the increased reality of the situation, I was surrounded by some very sick people undergoing some very intense treatments for cancer. It was somewhat emotionally draining.

The making of the mask consisted of having strips of hot plastic applied to my face until it cooled, and then the making of a mouth piece that one bites down onto to avoid any movement during the radiation treatments.

I was then given a trial run of the daily procedure:

• I would have the mask lowered onto my face --a little like Darth Vader!
• The mask would be clamped down on all sides -- for the machine to work properly, I would have to be in exactly the same position for each treatment. The mouth piece helps for this part.
  
• Finally, one lies down while the machine repositions itself for each "dose" of radiation.

Well, there you have all the gruesome details of my journey so far. My plan is to blog about it as I go so that people I care about are in the loop, and also so that I can benefit from the catharsis of writing about this unusual experience.

Until next time...