Klamblog - October 8th 2021 · 4:33am Oct 9th, 2021
When last I spoke to all of you, I mentioned how frustrated I was. I mentioned how my eyes were sliding over the words and that it felt like I couldn't focus. I thought it was due to burnout, and maybe there was some aspect of that. I thought my inability to concentrate was just some kind of mental block that would subside if I just stepped away from everything.
But as it turned out, there was something more to it. Something that wouldn't go away no matter what I tried. Something that just got worse over the months. I think a part of me always knew it was there, because there was this little voice insisting that something was wrong. At first I thought it was just the medications I was taking, but even when I went off those medications at my doctor's urging, the problems stayed. Headaches. Unsteadiness. Light sensitivity. Confusion. A CONSTANT buzzing, pulsating, pounding in my ears. Pressure in the back of my eyes. Mild difficulty swallowing. Ears popping EVERY time I swallowed. All these things and more. It wasn't getting better. It was just getting worse and worse.
I saw doctors. A neurologist, an ophthalmologist, an audiologist, a rhinologist, and others. They did tests. Eye dilation, eye photos, CT scan, MRI, hearing test, spinal tap, and more. They tried taking me off certain medications as well as trying new ones. At first they thought I had too much pressure in my head and it was causing me migraines. Problem was, the test results weren't coming back as "omg your shit is off the charts". They were coming back as borderline, and that wasn't good enough. In hindsight we now know that SOME of the symptoms are due to the "tortuosity of the optic nerve and subsequent papilledema". However, what's causing THAT isn't clear.
But what is clear is something that showed up on the MRI. Put simply, they discovered a brain tumor. The language from the MRI is thus:
Heterogeneously T2 hyperintense enhancing mass along the course of the mastoid segment of the left facial nerve with associated expansion of the sternomastoid foramen. The mass extends into the left parotid gland where it is largest measuring up to 1.3 x 1 cm in greatest transverse dimensions.
They believe the tumor is what's called a schwannoma. Most schwannomas are benign, though they can become malignant over time. Based on the tumor's relative size, it's likely been there for quite a while. You can bet I'm pushing to get the damn thing removed, but the problem is, well... there's an incredibly high chance I'll lose my hearing in one ear and suffer permanent facial nerve damage. This is an incredibly difficult case, to the point my neurologist doesn't want to do anything about it until my left eye is drooping and my smile is noticeably lopsided. I understand his hesitance, but it's very clear to me this tumor is the source of many--if not all--of my head problems. My quality of life has degraded drastically the last year because of it, and I can't live like this.
So I've turned to the best hospital network in my area: The Mayo Clinic.
I'm fortunate to only live 2 hours away from the Mayo's Rochester branch. I'm in the process of getting my test results transferred for their review, and so far they've gotten about half of them. I don't have any appointments set up yet, but I've been assigned to their otology and neurosurgery department. Last I heard they were conversing with the ENT people about my MRI results.
A lot of things are in flux right now. I can barely think, let alone do anything else. My fucking CAR decided to shit itself amidst all this, so that's another thing I have to deal with. I don't know what I'd do if my job hadn't been so understanding throughout all this. I do my best to stay out of the light as much as I can, but there's only so much I can do. The past few months have been an exercise of hanging on until the next appointment, hoping this one will have an answer. I feel like I did get one, as a lot of things do make sense now. I just have to hope against hope I caught this in time. I just have to hope that this can be fixed. I just have to hope that the resolution will give me back a reasonable quality of life, that I can be ME again.
I've been referred to a neuro-ophthalmologist and a headache specialist to try and help with the migraines. My neurologist doesn't think there's a correlation between the tumor and issues with my optic nerve, but who knows. I see the headache specialist next Thursday, and the neuro-oph December 9th. Who knows where I'll be by then.
Fuck 2021, man. Fuck it sideways with a rake.
From all of us to you and yours, we wish you luck and if the worst happens let it be quick and without pain.
Hopefully they will be able to do something about it now that they know what's going on.
I wish you nothing but the best and hope that things will work out and that you'll be okay. I can't tell you what to do except to really think about your situation from as many angles as possible and ultimately make the decision you feel is right and best for yourself.
Be well
I hope everything goes well.
Holy shit.
Stay safe, dude.
~Skeeter The Lurker
Holy shit.
No, 2021 can be rightly summed up as a very very long fuck.
May your options have a far better result than the reviewed results.
Yikes! I hope it works out for you!
Jeez, I'm so sorry dude. Here's hoping you can get the help you need.
Rooting for you, dude. Hoping it gets better.
Wishing you a successful treatment, and a speedy recovery. :)
Jesus fuck man, nobody should have to deal with these things, let alone someone like yourself. Here's hoping.
Oh God ;-;
"hugs you tight"
I should've checked in sooner ;-; I'm hoping and praying for the best!