Endolymphatic Sac Tumor - Anyone have any experience?
I could only find one other discussion on this topic and it was really really old. Also I didn't see much about an outcome or discussion of the procedure. I'm trying to connect with someone who has had an endolymphatic sac tumor removed. I have a lot of questions. I've got a subcentimeter EST in my right ear that's been there for likely over a decade. I lost all of my hearing and was diagnosed with Menieres Disease in 2014. I had a bout of severe vertigo, and then it lasted off and on for a couple of months. I haven't had any real issues since. My head might occasionally feel "off", as if I could experience some slight vertigo. Never any room spinning though like in 2014. We found the tumor in March of this year while looking for something else. My doctor thinks I was misdiagnosed with Menieres all those years ago. They want to remove it via a Translabyrinthine approach. It seems a bit extreme for a subcentimeter. I have done some research and I see there are two other approaches. One I believe was called a Retro labyrinthine, and seems like it might be more suitable. There is very little bone erosion, and it's a good ways away from any facial nerves. So that's good. I'm going to be getting a second opinion hopefully if this doctor will look at my case. Just wondering about anyone else's experience. I've just dealt with so much over the last year and a half. In June 2024 I had a Cerebral Venous Thrombosis in the sigmoid sinuses that extended into my jugular. They feel it was caused by my long use of oral contraception. I'm 46. So that set off a chain of events as I was immediately removed from birth control and my body had no clue as to what was going on. I had uterine fibroids and became severely anemic. Was hospitalized in December 2024 for a blood transfusion. Ultimately had a hysterectomy in February. Then in March I had some scans because I was hearing my own heartbeat in my left ear. Loudly! The CVT had caused a dural av fistula in the sigmoid sinuses. That had to be repaired in May. Turns out there were two of them when he got in there. Very large ones. He placed eleven coils for embolization. So during the procedure I had five TIA's, and that was a nightmare. I woke up to the room spinning. Couldn't open my eyes for an entire day. Was so sick! Spent 3 days in neuro ICU. One of the strokes was in an area that caused something called facial colliculas syndrome. I can't recall how to spell it. Anyway, that took about a month of some double vision, blurred vision, and just overall balance issues. I still feel like I am trying to get back to my old self from over a year ago. Oh and if all that wasn't enough, in the midst, I've had three separate MOHS procedures to remove BCC's from my scalp. It's literally been one thing after the next. So you can see why I might not be so all about just jumping right into something else!
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