Has anyone else been diagnosed with an endolymphatic sac 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.