I went to my "surgery consultation" on Monday, November 1. Or so I thought. It was simply an ENT surgeon reiterating what I found out in September. NO SHIT! I have a fucking brain tumor. I KNOW THAT!!!!!! Get on with it ... tell me something I don't know.
I truly think all these appointments are ways to get money from me and my insurance company. I could be wrong.
So, doctor number 1, who is located here in Tulsa and the ONLY ENT surgeon who has experience with Acoustic Neuromas and who will work with the only acoustic neuroma-experienced neurosurgeon to remove the tumor, has told me that he doesn't want to do surgery right now.
He put me in the dreaded Watch and Wait mode that all the people I've read about on the Acoustic Neuroma website dread. No one with a brain tumor wants to be told to wait and see.
I should be happy, right? I should be happy that my experienced doctor doesn't think surgery is necessary right now, right? I'm not.
It's not like I am dying to have my head cut open, but I do have the desire to get the tumor out and move on with my life.
I am dizzy all the time, I can't hear (this will NEVER be fixed) from my left ear and the tinnitus is oftentimes unbearable.
Doc #1 scheduled me for a bunch of tests with acronyms I can't even recall - VEMP, ENOG, ENG, ECOG, LMNOPNOG, EGGNOG, etc. OK, so the last two are made up. Doc #1 thinks I have Meniere's on top of it all. Which to be honest, I haven't even googled that because I really couldn't care less. Sad, huh? He thinks I should get all of these tests and then wait until another MRI next year to see how much the tumor has grown. I have nightmares that it grows a centimeter or more. Acoustic Neuromas are generally slow growing, but I lost my hearing in the matter of months, it seems like it's growing fast to me.
The day after I saw Doc #1, Doc #2 called. I sent my MRI scans and reports to him in LA. Doc #2 works for one of the premier Acoustic Neuroma hospitals in the country. Doc #2 has 15 years experience doing acoustic neuroma surgeries on a near weekly basis. He thinks I should not wait because the longer I wait the larger and more difficult it will be to remove. Right now he says he can do the translab approach which means a smaller incision and minimal to no brain exposure. Also he only estimates 1% temporary facial nerve damage. Also, he says I will be recovered and quite possibly back at work in less than a month. WTF!?!? The problem with Doc #2 is that insurance would be a bitch to work with - it might take months of denials and appeals to get the insurance to cover surgery in another state.
Two doctors, two completely different opinions. So WTF do I do??? I don't know. Is Doc #1 scared of doing the surgery? If he were to do it would he fuck it up? Sorry, I think I have used the word fuck at least 1,900 so far. I'm just in a fucking mood. Is Doc #2 just after the money? I don't know. Right now I don't want to spend the $500+ for a third opinion, but I think that is what I might have to do.
What would you do???
Please tell me. I am at such a loss right now.
I don't normally post hideously ugly photos of myself. This is where you chime in and say, "Joey, all your photos are hideously ugly." But, I am going to post this one. I don't have my glasses on and you can see my dark circles and my Native American-looking face (you may not know this, but I am 7/16 Cherokee - that's a lot for a white girl). This photo epitomizes my mood. This is when I was getting the ENOG, I think. The test that uses a stun gun sorta thing that shocks my face off over and over and over and over and over ad nauseam at varying degrees from low to high until the computer says I can't take it anymore. Fun!
Here is a picture of my dead dad. He is full blood Cherokee and died in 2005 in Baqubah in the Diyala province of Iraq, at the hands of someone who didn't respect life, much like he didn't. A suicide bomber. I think I look just like him, except he is brown and I am white.
Here is a picture of my brother I have never met.
Sometimes I wish I had brown skin. I could do without the Dawes tribe's broad shoulders, though. Actually, I could do without the Dawes Tribe!
I am seriously digressing.
Here is a picture of the stun gun medical device they used to stun me.
I have more tests tomorrow.
I guess I will wait to talk to Doc #1 again before I make anymore decisions.
I haven't eaten refined sugar since Sunday and have only had water to drink since Sunday. I am in a shitty mood all around. Everything is seriously starting to get to me. My brain tumor, lack of support with Harrison (this could be a completely different blog topic - all about Harrison's selfish father), dizziness, the fact that I seem to have zero social life anymore, my son's sadness about not seeing his father and "wanting a new daddy," not being able to hear from my left ear (this somewhat depresses me - a lot), not having my boyfriend near me, and general day to day stress.
But, I am still keeping a positive attitude - really, I am. And I am trying to keep my sense of humor. I have really amazing friends and family and a super awesome son. I am lucky.
I'll write later when I feel better.
Ancora imparo, for real.
