About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (3)

Nov 16, 2019 · Has anyone else been diagnosed with an endolymphatic sac tumor? in Brain Tumor

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!

Nov 15, 2019 · Has anyone else been diagnosed with an endolymphatic sac tumor? in Brain Tumor

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

Nov 9, 2019 · Has anyone else been diagnosed with an endolymphatic sac tumor? in Brain Tumor

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.