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.

Interested in more discussions like this? Go to the Brain Tumor group.

Hi @kayjaylauren, and welcome to Connect. Although I couldn’t find members who’ve discussed this exact condition, I’d like to connect you with others who may be going through something similar.

@astro3 asks some pertinent questions in this discussion:
– Anyone have skull reconstruction surgery due2 hollowing? or temporal muscle reattached
https://connect.mayoclinic.org/discussion/anyone-have-skull-reconstruction-surgery-due2-hollowing-or-temporal-muscle-reattached/
@philthomas share his experience here:
– Is anyone recovering from brain surgery related to hemangioblastoma?
https://connect.mayoclinic.org/discussion/is-anyone-recovering-from-brain-surgery-related-to-hemangioblastoma/
I’m also tagging @jentalleysoares @kkkk @htinlizzy @sarasally2 @saucy @dd300 @dlmassot, and you can read their and other members’ posts in this discussion on acoustic neuroma:
https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/

You may be interested in these archived Video Q&A sessions about brain tumors with Mayo experts from both campuses:
– #MayoClinicNeuroChat on Acoustic Neuromas https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/?
– #MayoClinicNeuroChat about Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-brain-tumors-2/

@kayjaylauren, do you know if you will need post-operative radiation?

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Glad you have gotten some answers and are feeling good about your upcoming surgery, @kayjaylauren. How have your symptoms been lately?

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@lisalucier

Glad you have gotten some answers and are feeling good about your upcoming surgery, @kayjaylauren. How have your symptoms been lately?

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Hi @lisalucier, thanks for your reply! My symptoms right now have been not so bad, just slight headaches, dizziness and imbalance. I'm happy I have answers as well and looking forward to my surgery next month at Mayo! Thanks for checking in

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@kanaazpereira

Hi @kayjaylauren, and welcome to Connect. Although I couldn’t find members who’ve discussed this exact condition, I’d like to connect you with others who may be going through something similar.

@astro3 asks some pertinent questions in this discussion:
– Anyone have skull reconstruction surgery due2 hollowing? or temporal muscle reattached
https://connect.mayoclinic.org/discussion/anyone-have-skull-reconstruction-surgery-due2-hollowing-or-temporal-muscle-reattached/
@philthomas share his experience here:
– Is anyone recovering from brain surgery related to hemangioblastoma?
https://connect.mayoclinic.org/discussion/is-anyone-recovering-from-brain-surgery-related-to-hemangioblastoma/
I’m also tagging @jentalleysoares @kkkk @htinlizzy @sarasally2 @saucy @dd300 @dlmassot, and you can read their and other members’ posts in this discussion on acoustic neuroma:
https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/

You may be interested in these archived Video Q&A sessions about brain tumors with Mayo experts from both campuses:
– #MayoClinicNeuroChat on Acoustic Neuromas https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/?
– #MayoClinicNeuroChat about Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-brain-tumors-2/

@kayjaylauren, do you know if you will need post-operative radiation?

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Hi @kanaazpereira, thanks for this info! I wish there was someone out there with the same tumor to connect with! But I know it’s so rare, I’ve researched similar skull base tumors before specifically acoustic neuromas and Dr Bendok and Dr Weisskopf will actually be performing my surgery next month! I’m not sure if I will need radiation but I’ve already met the radiation team and Dr just in case! Once again thanks for this information and reaching out!

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@kayjaylauren

Hi @kanaazpereira, thanks for this info! I wish there was someone out there with the same tumor to connect with! But I know it’s so rare, I’ve researched similar skull base tumors before specifically acoustic neuromas and Dr Bendok and Dr Weisskopf will actually be performing my surgery next month! I’m not sure if I will need radiation but I’ve already met the radiation team and Dr just in case! Once again thanks for this information and reaching out!

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Hi, @kayjaylauren – you mentioned your craniotomy resection w/ stomach graft is sometime in December. When will you have the surgery? What will your recovery be like, according to your surgeons?

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@kayjaylauren

Hi @kanaazpereira, thanks for this info! I wish there was someone out there with the same tumor to connect with! But I know it’s so rare, I’ve researched similar skull base tumors before specifically acoustic neuromas and Dr Bendok and Dr Weisskopf will actually be performing my surgery next month! I’m not sure if I will need radiation but I’ve already met the radiation team and Dr just in case! Once again thanks for this information and reaching out!

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Hi, @kayjaylauren – wanted to touch base with you and see how you are doing?

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Hey I know you posted this two years ago but I had the symptoms minus the face spasms u mentioned for a year starting last year the hearing loss had been here way longer smd my Mri results are pointing to they think I have the same as you hi did surgery go are u back to normal now ? I've to go back in march for further scans I asked could they remove it and he said it would make it worse so don't understand what this means for me

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@scottjg984

Hey I know you posted this two years ago but I had the symptoms minus the face spasms u mentioned for a year starting last year the hearing loss had been here way longer smd my Mri results are pointing to they think I have the same as you hi did surgery go are u back to normal now ? I've to go back in march for further scans I asked could they remove it and he said it would make it worse so don't understand what this means for me

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Hello @scottjg984 and welcome to Mayo Clinic Connect. I can see you are interested in connecting with the member who originally posted this discussion so I wanted to show you a way that will notify her of your interest. If you use the "@" + her handle, she will be notified per her settings. In this case, you would use @kayjaylauren to see if she would be willing to come back and provide an update.

Have you asked what it means for you if they do not remove the tumor?

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@kayjaylauren how have things been ? I know this posts two years old I've just been diagnosed with the same and know nothing

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@amandajro

Hello @scottjg984 and welcome to Mayo Clinic Connect. I can see you are interested in connecting with the member who originally posted this discussion so I wanted to show you a way that will notify her of your interest. If you use the "@" + her handle, she will be notified per her settings. In this case, you would use @kayjaylauren to see if she would be willing to come back and provide an update.

Have you asked what it means for you if they do not remove the tumor?

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Haven't had any reply it looks like they weren't online since last year

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@scottjg984

Haven't had any reply it looks like they weren't online since last year

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Hi yes I had a very successful Eat removed in Rochester 3 months ago! Doing very in slow recovery!

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@sunshine80

Hi yes I had a very successful Eat removed in Rochester 3 months ago! Doing very in slow recovery!

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EST not eat!

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