u/yrsocool

I have an en plaque meningioma around 4x3x2cm weaving through my cavernous sinus, prepontine cistern, sella, cranial fossa, meckels cave, enveloping & encasing my carotid artery, cisternal segment of the left trigeminal nerve, next to my 7th & 8th cranial nerves and a couple of mm from my optic nerve. I also have hyperostosis so I guess it's in my bone too.

So far I've met with multiple neurosurgeons who told me any level of surgery is too risky & suggested I opt for radiation. But my case was presented to the SRS tumor board who said I should pursue surgery.

So am I just screwed? Has anyone out there had a tumor like this treated in any capacity? I read papers where people have cavernous sinus tumors debulked and reduced and radiated - why is mine not a candidate for anything? I'm a ticking timebomb. At some point it's going to get to those nerves and there's just nothing I can do?

I had a TT 16 months ago. I came home from surgery w/tinnitus & in the weeks that followed my ears started to feel full.

My DNA chart shows I'm a bad converter & sure enough my T3 is always in the bottom 1/4 of range. Last Dec I asked to supplement T3 but then my dr dropped my levo dose to compensate. I had been doing well on 137mg (lower 1/4 of t3 but I felt fine other than my ears being somewhat full) but when he added 5mg of T3 2x daily he dropped my levo to 112mg. About 2 months later I started sleeping 10 hours a day (normally 7), skin & hair got super dry, nails became brittle w/ pronounced ridges, then my ears got REALLY full. During this same week I had my first beer since the TT & had an immediate strong histamine reaction w/ flushing & my nose running like a faucet. The next say I woke up and my ears were even more full.

I thought for sure I had gone hypo but my bloodwork only showed a slight rise in TSH & T4 was in the lower half of normal. I felt like shit so I went back on 137 of levo, which meant stopping the T3. Since then my T4 is back up, TSH is super low, but somehow my T3 has dropped even more. I was hoping going back on 137mg would result in my ears unclogging & the histamine issues stopping but they've continued for the 4 months since. Wine, milk, chipotle, and the sun are the worst offenders.

The ear fullness fluctuates. They're least full in the morning then extra full the second half of every day. I've been to 2 ENTs (stumped), my PCP (stumped), had hearing tested twice with 2 completely different results (because it fluctuates duh), had a CT and MRI which show nothing notable in the ear area, and have an appt w/ an allergist in 2 weeks. I've never been allergic to anything but this definitely seems histamine related, which all started with my TT and has fluctuated alongside my levo dose.

Sometimes I feel dripping in my ears. My ENT put a tube in 1 ear to see if it would help and when he initially sucked the fluid out it felt incredible & I could hear REALLY well (too well, like a big echo-y hallway) for the first time in so long. But by that evening it felt full again. He said there "wasn't much" fluid and dx'd me with "mild" eustachian tube dysfunction.

I'm at a loss. I take 2-3 zyrtec a day which helps a tiny bit but I still go through a few boxes of kleenex a week. I use a saline rinse followed by cromolyn sodium nasal spray. So far nothing helps. I'm so tired of not being able to hear anything. My next ENT appt is next week & I'm hoping to show up with some treatment ideas. Anyone else encountered something like this?