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Has anyone else been diagnosed with an endolymphatic sac tumor?

Posted by kayjaylauren @kayjaylauren, Nov 9, 2019

Hi all, I am new to the forum and wanted to reach out to see if anyone has been diagnosed or has had an Endolymphatic Sac Tumor? I know that it is a very rare tumor. It is a grade 2 tumor similar to an acoustic neuroma, invading the hearing, swallowing and face nerves. My symptoms began 6 years ago at the age of 27 years old but was told by my doctors that it was just an ear hemorrhage and nothing could be done. At that time, I had an MRI that just showed a hemorrhage, I had really bad vertigo and moderate hearing loss in my right ear with chronic tinnitus. I was experiencing symptoms the next 6 years without any knowledge of it being a tumor until this June.

I went to my Dr thinking I had another ear infection or suffering from what I thought was the flu again but my primary Dr told me he could see something in my ear and referred me to an ENT. I then had a CT Scan that showed a mass in my brain, after going to the ER in June with excruciating migraines, nausea, face spasms, vertigo and just a sick feeling like the flu. At this time, I had complete hearing loss with tinnitus in my right ear as well. I had a bone biopsy but the Dr had biopsied the wrong tissue, he also told me he had gotten the tumor. It was a 5 hour surgery, 6 weeks later in my follow up MRI I was advised that he had not gotten the tumor and he wanted to make it right this time. I was scheduled for a craniotomy in October but decided to get a second opinion with Mayo Clinic. Coming to Mayo Clinic was the best thing that could have happened to me. I was finally given a diagnosis and am scheduled for a craniotomy resection w/ stomach graft next month. I have full faith in my team of Doctors. With the faith in my doctors, as well as a therapist and psych, I feel that I am now ready for the surgery. This brain tumor has changed my life, I am glad there are forums with others that can relate to what I am going through I just wish I knew anyone else out there with the same type of tumor I have. Thanks all.

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glanv3105 | @glanv3105 | May 8, 2022
In reply to @kfox7818 "Hi @scottjg984. I believe you are asking about having an endolymphatic sac tumor removed. I have..." + (show)
@kfox7818

Hi @scottjg984. I believe you are asking about having an endolymphatic sac tumor removed. I have had surgery on this 5 times. I just had my 5th surgery last week. I am sure I can answer any and all questions. I didn’t think anyone else had this tumor bc there are so little reports on it. I am 41 yrs old now, first survey was at 36

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Hi @kfox7818 yeah I was in for my secondary MRI scan my balance is already damaged and Im spending too much time stressing worrying about it I don't know what it all means will I be permanently disabled or worse my symptoms now are hearing loss tinitus balance I had asked about surgery and he said he could remove it by my other side will just end up compensating

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1 reply
glanv3105 | @glanv3105 | May 8, 2022
In reply to @jodocybb51 "I was just diagnosed in January with EST. I have had a cat scan and and..." + (show)
@jodocybb51

I was just diagnosed in January with EST. I have had a cat scan and and mri. The tumor is small and slow growing. He thinks I should wait and have another mri to see if there has been any changes. The next mri is scheduled for June 29th. He said surgery is risky although at some point it has to come out. But there is so many unknowns. I don’t know what to do. Can you share your experience from diagnosis to surgery?
Thank you.

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@jodocybb51 In exactly the same I feel as if my days are consumed with worrying about it all

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kfox7818 | @kfox7818 | May 8, 2022
In reply to @glanv3105 "Hi @kfox7818 yeah I was in for my secondary MRI scan my balance is already damaged..." + (show)
@glanv3105

Hi @kfox7818 yeah I was in for my secondary MRI scan my balance is already damaged and Im spending too much time stressing worrying about it I don't know what it all means will I be permanently disabled or worse my symptoms now are hearing loss tinitus balance I had asked about surgery and he said he could remove it by my other side will just end up compensating

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I had my hearing removed on my left side in 2018, it is easy to adapt to that. The only issue I have now knowing where sound comes from so someone would have to tell me where they are in a store or in the house. I position myself in a restaurant to make sure I can hear the table.
The dr is 100% accurate that your other side will compensate. Shortly after every surgery I have been at the gym lifting weights and having no issues with balance. It is pretty amazing what your body can do. You will not be disabled at all, I am fully functioning and living a normal life. No headaches or issues. The only reasons you would know I had surgery is they did have to take my facial nerve so I had some surgery on my face to help with paralysis so my smile is a little off but honestly it sounds so scary but I swear you will have a normal life

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1 reply
glanv3105 | @glanv3105 | May 8, 2022
In reply to @kfox7818 "I had my hearing removed on my left side in 2018, it is easy to adapt..." + (show)
@kfox7818

I had my hearing removed on my left side in 2018, it is easy to adapt to that. The only issue I have now knowing where sound comes from so someone would have to tell me where they are in a store or in the house. I position myself in a restaurant to make sure I can hear the table.
The dr is 100% accurate that your other side will compensate. Shortly after every surgery I have been at the gym lifting weights and having no issues with balance. It is pretty amazing what your body can do. You will not be disabled at all, I am fully functioning and living a normal life. No headaches or issues. The only reasons you would know I had surgery is they did have to take my facial nerve so I had some surgery on my face to help with paralysis so my smile is a little off but honestly it sounds so scary but I swear you will have a normal life

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You have no idea how much weight this has lifted off my shoulders it's been horrible and I don't know if half my symptoms are worse due to anxiety I think they said it was only 2cm by 2 cm ATM I'm okay walking and things I just feel as though I'm drunk I think they are just leaving it be for now then Will remove when it gets to too big a size .

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1 reply
kfox7818 | @kfox7818 | May 8, 2022
In reply to @glanv3105 "You have no idea how much weight this has lifted off my shoulders it's been horrible..." + (show)
@glanv3105

You have no idea how much weight this has lifted off my shoulders it's been horrible and I don't know if half my symptoms are worse due to anxiety I think they said it was only 2cm by 2 cm ATM I'm okay walking and things I just feel as though I'm drunk I think they are just leaving it be for now then Will remove when it gets to too big a size .

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I didn’t discover mine until it was very big so that’s good news that you can wait. Also don’t be concerned with having a facial nerve removed, they had left that in with a small amount of tumor but the tumor regrew so that’s why they pulled it. My first few surgeries were fine, a few months to recover and back to your normal life. It is just scary bc there is not enough cases on this so it is hard to know how recovery is

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1 reply
kfox7818 | @kfox7818 | May 8, 2022
In reply to @jodocybb51 "Actually my doctor sent my cat scan and mri to a doctor in Los Angeles and..." + (show)
@jodocybb51

Actually my doctor sent my cat scan and mri to a doctor in Los Angeles and one at Rutgers for their opinions. The LA doctor agreed it that it was better to wait and see what the next mri shows and the doctor at Rutgers said he would consider surgery right away. So I guess for now I wait until the mri in June. I am very nervous about the surgery. Although it is inevitable at some point.

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@jodocybb51 i just saw this message, if you have any questions now or after your MRI feel free to reach out just put @kfox7818 so I get the email notification. I went through this with little information so anything I can help answer I would be happy to!

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glanv3105 | @glanv3105 | May 8, 2022
In reply to @kfox7818 "I didn’t discover mine until it was very big so that’s good news that you can..." + (show)
@kfox7818

I didn’t discover mine until it was very big so that’s good news that you can wait. Also don’t be concerned with having a facial nerve removed, they had left that in with a small amount of tumor but the tumor regrew so that’s why they pulled it. My first few surgeries were fine, a few months to recover and back to your normal life. It is just scary bc there is not enough cases on this so it is hard to know how recovery is

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Yeah 100% Google is horrible they told me not to pay Any attention to what's online as alot of it can be outdated information the same with cancer thanks so much for reaching out you've no idea how much better I feel about things

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lestoil05 | @lestoil05 | Mar 16, 2023

Hi, we are going through that right now, my husband has been diagnosed with Endolymphatic Sac Tumor. We are working with a team at Mount Sinai in NYC. Hope all went well with you. How was the recovery? His surgery is planned for April 3.

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