Hey! So I'm one of the old members here, but haven't been on to often. And I even missed my birthday wishes. I want to share something with you all. Some know I was diagnosed with an acoustic neuroma brain tumor. It was benign, but meant I was going deaf in the ear it was located by, I was losing my balance, and I was having levels of pain I didn't know were possible as it was attacking my facial nerve. Now truth be told, this is cut and paste from a Facebook post I wrote today, with some minor edits. Looks like it's brain tumor awareness week! I know all about that now. As most of you know I was diagnosed with a left acoustic neuroma. That's a tumor that grows on the inside of the skull, against the brain stem. A more popular name is vestibular schwannoma...Because it screws up your vestibular nerve (balance). Mine took 2 years to find and get operated on, but many arent so lucky. My only symptom was hearing not coming back from after a concert. And that could have been anything! I listen to loud music and love my live shows, sans earplugs. But anyway, it totally messed things up. There was dizziness and vertigo, like I had never known, and more noticeable was the pain. There was stabbing in the side of my head that dropped me to my knees, the constant feeling of having a shattered jaw on the left side. It was terrible. That was all thanks to the little hitch hiker trying to tag along on my facial nerve, where it exists the brain. (Being nerve #3 on my brain stem that it was attacking...Vestibular, auditory and facial). On Friday, March 10, my big 33rd birthday, I was lucky enough to have it removed. Like I said, after 2 years of living with side effects...That I knew of. The planned 4 hour surgery took about 9, and my 1 hour recovery, took about 3. I had amazing surgeons working on me and an amazing neuro team in general. The tumor was about the size of a loonie ($1 coin) when removed, being almost double inside than initially measured, and was fused to my facial nerve...hence the long surgery. But it was all removed as proven by an MRI during the following days. I am now home, and it being 4 days post op, this is how I feel. Day of surgery, I felt like death and that I wasn't gonna make it. March 11 - I lived off ice ships and barked at everyone who came close. March 12- I got my bandage off, had my MRI and started eating. .I was feeling new again. March 13 - I went home feeling healthier than I have in at least a year. Today - I woke up after a good 10 hour sleep ready to practice my walking and to have some food. Feeling better than I did yesterday. Now things are not perfect, I can't walk too well, I can only walk about a block without needing quite a rest, and I have a renewed appreciation of baby's learning to balance ( I am learning to balance again as I only have one vestibular nerve in the works now...Learning to compensate for it's missing friend), and I can only move half my face, as the left side is still sleeping from the surgery (it will come back fully in the next few weeks/ months). In fact as I write this, the room is spinning around me at a million miles an hour...But I have not been happier in a long time. Brain tumors are unfortunately pretty common, I learned just how common up on neuro recovery. Luckily we now have amazing technology to help us get rid of them. Some cause issues, some don't, some are cancerous, some aren't. Mine wasn't but it still wreaked a crap load of havoc. Take a monent this week and get to know a little more about brain tumors, no one effects a person the same way...We all are different Anyway, I think I have spouted off enough, that's my story. If you ever find out that you have one, turn to me, I'll be there for you, as all of you have been here for my family! We love you all! Every little like and comment gives a HUGE amount of support, and those are only pixels. But yeah, reach out if you ever half to, even if it's just something scary your going through. We're all friends in it together! Cheers!! Me today The little bugger Sent from my Nexus 5X using Tapatalk
Glad to hear everything went good. Wishing you the best recovery Sent from my SM-G920P using Tapatalk
Luke, you are an inspiration and a fighter! Lord, if it is Your will, please grant Luke a full recovery and thank You for the miracles of modern medicine.
Luke, just met ya and already love ya man! You're a true warrior and I wish you a speedy recovery. Prayers Out to you and yours!
Luke, thank you for sharing that. I am thrilled to see you doing well and will keep you in my prayers.
I had a similar tumor on the V2 branch of the trigeminal nerve, and suffered pain, numbness, loss of taste, blurred vision, and it took alot longer for a diagnosis. It was paracoccidioidomycosis and that was hiding several tuberculomas I had removed, and one from optic nerve. I caught these caving in South America, and the recovery is slow. You are a warrior, and not alone. Hope all goes well, and faith, family, a friends are helpful in recovery. I understand the side effects of the medication, and I am thankful for the Gamma knife and thankful that you posted this. Only someone who has been there, can truly relate and identify with how important the trigeminal nerve is and how it destroys your quality of life. Thank you again for the awareness , and you are lucky you found a diagnosis. Mine took longer due to the co-infection. You are in my prayers. Sincerely Mike.
My thoughts are with you and keep getting better. We have saying when one faces tough times, fighting! Keep on fighting and getting better.
Thanks Mike! Yeah I got lucky with the walk in doctor, pushing me to an ENT..Without that I would have never had a prayer in being diagnosed. It was just luck, or a guiding hand (the more likely). I'm sorry to hear about yours! I had the option of gamma knife, but I thought because of itbeing small at the time, and supposedly"less sticky", that surgery was the way to go. It's scary stuff, besides all the tech that now helps, and I know I'm just on this side of recovery so much can't fully talk about it...Not being completely healed (or as much as I will be). But it amazes me how one small thing can do so much damage! Once again, thanks Mike! I hope your doing well too! ******* Thanks to everyone else, for your prayers and thoughts! Know I don't come looking for them, I just want to raise a bit of awareness. That being said, they are always more than welcome, as you all know. Sent from my Nexus 5X using Tapatalk
Here's to you keeping the pace and progress of that baby in moving from struggling with balance to walking securely to running and dancing – without fatigue. Oh, and to getting that razor up from the drawer too!
Ha ha ha! I tried to get one. Maybe later, but for now I'm just borrowing a friend's sky blue cane. Sent from my Nexus 5X using Tapatalk
Thanks! I'm looking forward to a good shave in the coming weeks. Sent from my Nexus 5X using Tapatalk
I'd love one of those antique black and silver tipped, gentleman walking sticks. Like in the old English books, etc. Now that I have a legitimate medical reason, I wouldn't look like such a jerk. Most people where I am from, fashion wizard staff-like canes...But I am living in a small town near the mountains. Thanks for the site. I'll have a peek at it later. Sent from my Nexus 5X using Tapatalk
I second the Pimp Stick idea. Welcome back, and I wish you a speedy recovery. I feel for the pain you were in. I was with my son, a month ago, before and after his brain surgery. It was heart wrenching to see.
