Hi, I'm Sarah, a Newbie.
I have a tiny little demon of a tumor, only 3mmx2mm but it's already hospitalized me once after vertigo left me with very low potassium levels. (I couldn't move without vomiting and it would not stop. Now I have meds, so there's a bit more control there, and it's been over a month since vertigo last visited.) Today I'm having "brain zaps," general brain fog, fatigue and slight tinnitus. My past symptoms have included the vertigo and balance issues that have caused me to need a cane a few times. (Walking fine now.) I stopped driving in August because turning my head from side to side is disorienting, it definitely makes me an impaired driver. Is it normal that symptoms come and go like this? Should I expect vertigo to sneak back up on me?
I was diagnosed in October, but looking back I can see I've had symptoms for at least a year. My ENT is very familiar with AN, and I liked him very much, but communication seems to have stopped. The last time I visited his office, he had me take two more tests. He had me sign a paper saying I'd pay for them if insurance wouldn't, but I don't know what the tests were for and I don't know the results. That was in early November. I called him November 17 asking about the results, and as of today (December 11) I have yet to hear anything back. I've even left messages that I'd like to go ahead and schedule surgery, understanding that with the pandemic it may be a date many months in the future. I'd just like to feel settled, to know what's going on. I need a plan. (My surgery would be mid-fossa, done by a surgeon about four hours away who has been contacted by my ENT, as my ENT only does translab and my hearing is still good.)
It's possible that I'm in W&W in his mind and he thinks there's no rush here, although that was never mentioned to me. I understand mine is tiny, they grow slowly if at all, that medically there actually is no rush. I feel like W&W is code for "let's wait until it's bigger" and I just don't care for that. Better results are more likely from smaller tumors, I've read. I still have decent hearing.
Covid means my adult daughter is living with us before going to grad school and it would be helpful to have surgery while she's here and can drive me to appointments and help afterward. Also, I work from home but the fatigue has me napping nearly every day, and I just never feel ... good. I worry about losing my job of 12 years, and how do I get a new one when I can't drive and always want a nap? Should I sell my car? Watch and wait until I don't have a job and can't pay for surgery? Leave the possibility of vertigo returning as we just wait? (I really hated the vertigo, if you can't tell.) Or am I crazy to want surgery so soon after diagnosis?
Thanks any who read this far. I'd love to hear how you made your decisions, or any advice you could share.