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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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Jamie,
I am another person that you have met with an ESLT. I know how unnerving it is to have the symptom of the heartbeat and fullness in my left ear and dabilitating Cluster Headaches-another story in itself-, with that being said, I was able to go to Mayo Clinic for diagnosis and the removal of tht tumor. In my case, the tumor devastated my hearing to the point of deafness. I had and still have the hallmark vertigo and unfortunately, the cluster headaches, whitch in no way are related but without them I would have never ubderwent the CT and forund it. My surgery was done by Micheal Link at St Mary's hospital there in Rochester. I want to stress how important that it is to go to Mayo Clinic if possible. I went there and my surgery was pro bono because of the intense research involved in treating the problem. They will probably inform you that you can have the surgery there and they will flip the bill. What a gift Huh? so as not to ramble needlessly for not recieving a reply, the ball is in your court..contact me with Any questions about the pre-surgery anxiety and the post-surgery recovery (it will not be easy!
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2 Reactions@jmarie711, I hope you saw the helpful post from @sadikiyanamama35, who also has experience with endolymphatic sac tumor (ELST).
I'm also tagging fellow ELST members like @kayjaylauren @sunshine80 @scottjg984 @kfox7818 @jodocybb51 to join the discussion and share their experiences.
@jmarie711, you've been through a long and winding road to diagnosis. I'm sure that has been hard. At this point, you're wise to get a second opinion at a top care center. Have you considered getting a second opinion at Mayo Clinic?
@colleenyoung It is something I've definitely considered, but it is quite a good distance away from me. That's the only drawback.
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1 ReactionI live about 7 to 8 hrs away from Rochester but have had several surgeries there they are fantastic I had my first ELST surgery there 4 yrs ago had a cyst that grew back this last Feb so it removed again. Mine is wrapped around carotid and laying on jugular has anyone else had this? I am an 84 yr old women
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1 Reaction@sunshine80 Wow, that sounds awful! I'm about 15 hours away. How big was your first tumor?
I have had 5 surgeries on my ELST then we finally did radiation, it hasn’t grown back in 3 years, previously it grew back every year. I don’t know the type of surgery you mentioned but I am happy to provide more details or answer any questions you may have
I wonder why radiation wouldn't initially just be a route to take. Especially for such a small tumor like mine. The surgery seems so invasive. It sounds like there is a high recurrence rate. I would like to know more about your surgery, tumor size, etc. Can we connect by email?
@jmarie711 I don't remember the size but it was large I was in surgery for 8and half hours. But I did very well no stroke or swallowing problems only facial nerve destruction.
@jmarie711, we recommend not sharing personal contact information on the forum as per the Community Guidelines. Better to use the secure private message function.
I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other and to help future members to connect with you too.
@jmarie711, have you discussed raditaion options vs surgery with your care team?
@colleenyoung I didn't know there was a secure private message function. I don't mind sharing things on the forum. Just wasn't sure how much someone else would want to put out there. Surgery details might be scary for others that aren't looking to necessarily see all of that.
We hadn't talked about just radiation. My doctor said we wouldn't do that. But I honestly felt like she was treating me like this rare case where she just wanted to be able to do the surgery. She was being so extremely pushy about it. That is why I'm working on getting a second opinion.
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