Nov 25, 2016 Latest post:
May 25, 2018
As you may know, I have been diagnosed recently with a Meningioma, otherwise known as a brain tumor. I know right! Or, WTF! You might ask, well how in the heck did this happen? And the answer is there really is no answer, the good news is, it's not hereditary so JJ & Christina can rest at ease that if they were to get one, its not my fault.
This tumor is a very slow grower and could have been there for 20 years - which might explain a few things :-). Because they are slow, there is no way of knowing it's there until you start to have symptoms. For me two things happened - the inside of my mouth on the right side had some numbness and then the ringing in my ear started and I had some difficulty hearing clearly. Both of these things were easily explained. The hearing issue started 1.5 years ago. I went to ENT #1 who tested my hearing and determined all was well but thought I might have an allergy issue along with swollen eustachian tubes. He prescribed regular over-the-counter allergy meds and I was on my merry way. However, after 60 days of meds with no change, I figured something was still wrong.
I went to ENT #2 in September 2015 and they did another hearing test and determined all was normal once again. This ENT concluded that I had some noise damage which I could certainly buy as many of you know I ride a Harley and listen to music on the *slightly* loud side. In the last 6 months I noticed that my hearing was getting worse so I made a decision that I would get my hearing checked again in September 2016. On my vacation to Punta Cana with the Bossy Pants, two of my friends (Sandy & Kathy) pulled me aside and told me I needed to deal with my hearing issues because they could see it was worse - and frankly I think they were tired of me saying 'What?'. Upon my return, I made an appointment to see the audiologist and off I went. The results showed a significant change in my hearing on the right ear and thus, ENT appointment #3. I visited Dr. Livingston who looked at the results, asked me some questions, and did a balance test. It became pretty clear to him that I had an inner ear issue and it probably wasn't good. He ordered an MRI and the rest shall we say is history.
Dr. Livingston got me in touch with a Neuro ENT - Dr. Leonetti from Loyola University Medical Center and off to the new doctor we went (Jim, Christina, and my friend Sandy). We learned a lot about this tumor.
1. It's about 4.5 cm - that's between the size of a strawberry and a lime.
2. It's located on the right cerebellum and into the inner ear canal (like an umbrella).
3. Because I wouldn't be me unless it was complicated - while a meningioma is one of the most common brain tumors, where mine is located and how it grew is extremely rare. I should go play Lotto because I think I'd probably have pretty good odds of winning! These tumors are typically benign (90%) so I'm hopefull mine lands in this bucket.
According to Dr. Leonetti - a lot of flippin nerves are located in this area! This explains the numbness, the hearing loss and even some balance issues I had been seeing. Because of the size of the tumor, surgery is my only option. Dr. Leonetti described what would happen during surgery and the possible post side effects. These nerves control lots of fun things! (hearing, balance, facial movements, vocal chords, eye movement, etc.) Needless to say any/all of these things could be impacted. Most of the side effects will clear after a period of time. Hearing however will not and this is probably the greatest risk I have - losing all hearing in my right ear.
And so… surgery is scheduled for Tuesday, January 10, 2017, or "Tumor Tuesday!" As I'm going to so affectionately call it.
If I lose hearing in my right ear, a year after my tumor removal surgery I can see about getting an implant which will direct sounds from the right side into my left ear - I know, sounds odd to me too. While losing my hearing is not optimal, I certainly can think of worse things. Hey, might help me sleep as if I turn the right way I will no longer hear Jim snore. Or if I really don't want to hear you - I'll tell you to speak into my right ear :-)
While this is really scary, I have accepted this journey that God has placed me on and take it on with open arms and a smile on my face. As you all know, it takes a lot to get me down and while I have my moments, I'll take this thing on head on (pun intended) and fight all the way to the finish line.
Thank you all for coming along on this journey with me and for all the thoughts, prayers and support you have already bestowed on me.
Stay tuned for updates - I'll post or Sandy (my personal assistant) will as we learn new things.
PS - I'm now accepting names for the stupid thing sitting in the back of my head. I'm thinking Tommy Tumor… or maybe Tina Tumor…