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 Support Group.

sunshine80 | @sunshine80 | Dec 2, 2021

In reply to @scottjg984 "Haven't had any reply it looks like they weren't online since last year" + (show)

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

sunshine80 | @sunshine80 | Dec 2, 2021

In reply to @sunshine80 "Hi yes I had a very successful Eat removed in Rochester 3 months ago! Doing very..." + (show)

EST not eat!

scottjg984 | @scottjg984 | Dec 3, 2021

In reply to @sunshine80 "EST not eat!" + (show)

Oh that's brilliant I'm in Edinburgh my consultant said he can remove it but my right side will compensate for it not sure what that meant how bad were all your symptoms they've said that my balance canals are eroded and I've not to go back until march as they want to do another MRI and check my kidneys for VHL

scottjg984 | @scottjg984 | Dec 3, 2021

@sunshine80 Oh that's brilliant I'm in Edinburgh my consultant said he can remove it but my right side will compensate for it not sure what that meant how bad were all your symptoms they've said that my balance canals are eroded and I've not to go back until march as they want to do another MRI and check my kidneys for VHL

sunshine80 | @sunshine80 | Dec 3, 2021

In reply to @scottjg984 "@sunshine80 Oh that's brilliant I'm in Edinburgh my consultant said he can remove it but my..." + (show)

I'm in the United States! Rochester Mg is where I had my surgery! I Have partial facial paralysis and balance is damaged but with OR I am walking with a cane. They got most of the tumor it is a slow recovery but I'm 80 years old!! Good luck to you!

scottjg984 | @scottjg984 | Mar 1, 2022

@sunshine80. Had to create a new email that's fantastic that your receiving did they say if the facial paralysis would be permanent that's what I'm dreading. My tumors only 2cm by 2 cm I think I'm due to go back on the 15th march for a review jist so they can see how it's growing etc I'm only 37 so really anxious about it

kfox7818 | @kfox7818 | Mar 27, 2022

In reply to @scottjg984 "@sunshine80. Had to create a new email that's fantastic that your receiving did they say if..." + (show)

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

jodocybb51 | @jodocybb51 | Apr 27, 2022

In reply to @sunshine80 "Hi yes I had a very successful Eat removed in Rochester 3 months ago! Doing very..." + (show)

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.

Colleen Young, Connect Director | @colleenyoung | Apr 29, 2022

In reply to @jodocybb51 "I was just diagnosed in January with EST. I have had a cat scan and and..." + (show)

Welcome @jodocybb51. I can imagine that you have many questions. Luckily @kfox7818 recently joined the forum and has had surgery for endolymphatic sac tumor multiple times. I'm sure she can share more about her experience. Hopefully @scottjg984 @sunshine80 @kayjaylauren and others will add their experiences too.

Jodo, have you considered getting a second opinion?

jodocybb51 | @jodocybb51 | Apr 30, 2022

In reply to @colleenyoung "Welcome @jodocybb51. I can imagine that you have many questions. Luckily @kfox7818 recently joined the forum..." + (show)

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.