Pulsatile Tinnitus and Headaches

[Eebs]

Hello Everyone,
I hope you all had a wonderful Thanksgiving! I am newly diagnosed August 8th 2024. 3mm very small. On watch and wait with my 2n opinion Neurotologist. I have been told that my chronic severe pulsatile tinnitus and my migraine with aura are not caused by this tumor. I am told it is sitting on/near my cochlear nerve. Any thoughts on this? Anyone else told this? My dr has yet to address ear pain I tell her that I continue to have. I think the concensus is that this tumor is too small to be the cause. Thanks for listening.

[mwatto]

I had pulsitile tinnitus for two years before diagnosis - was dismissed by doctor I was seeing (who also told me that I did not need an MRI or to see an ENT that my symptoms were all in my head so it had grown by time I had it confirmed). Well, new doctor and so on and I had CK treatment. It went away and has not returned almost 6 years later. I personally think it is related to the AN.

[Eebs]

Thank you so much for responding. I'm so sorry your first dr passed it off as in your head. I'm very happy to hear you got treatment and your tinnitus is resolved.  I have been to 5 ENT's over the years and each and every one knew I had this tinnitus and headaches. Not one ordered a scan. I went to a Neurologist for my migraines and she did some testing in the office and discovered I had hearing loss in my left ear. She sent me for the MRI. She had told me not to be alarmed but I could have a tumor...well she was spot on! I am on watch and wait but yesterday I came across a research paper from UVA that is interesting. http://newsroom.uvahealth.com/202411/12/vestibular_schwannomas/  They are learning that wait and watch may NOT be the best option and radiosurgery early is showing promising results. I am 64 and would rather not wait until this tumor takes out more of my hearing or balance.  I have sent this link to my dr. We shall see what she has to say.  Stay well.

[donjehle]

Thanks for posting in the forums, Eebs!

As one who is also on watch and wait protocol, I found that research paper quite fascinating.

Let us know what happens in your journey.

Best wishes!
Don