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

[Eebs]

Thanks for replying Don. I hope your holiday's were good. The study was fascinating although my neurotologist did not feel the same. She was quite unimpressed and made a good point about the study not comparing growing to non growing tumors. Here is her response: "I can not tell you how many patients I have seen get gamma knife and have dizziness that is significant within months of it and totally lose hearing- it does not always happen but it does sometimes. This study does not compare non growing tumors who did not get radiated to those that did - just those that were growing. We do not radiate the hearing and balance nerve when tumor is not growing bc the tumor is on this nerve that's its origin. That nerve will also get radiated. Gamma knife (stereotactic radiation which we do here also) is a great option for a growing tumor."

Also, have any of you had incidental findings on this journey? It has been a harrowing experience for me now since August. MRI also showed I have a pseudoaneurysm in my left carotid artery and further testing by ultrasound then CT confirmed 8mm pseudoanuerysm and fibromuscular dysplasia aka fmd (another rare disorder)currently being monitored for growth on that as well. Believe it or not the CT scan led to finding a nodule on my thyroid (I have Hashimotos) which led to an ultrasound of my Thyroid which then discovered I actually have two nodules a 1.3cm and a 1.5 cm. One on the right and one on the left.  Thankfully no more incidentals...waiting to see what the next step is for those. Hoping 2025 is a much less eventful year for me medically speaking!
We carry on the best we can!

[donjehle]

I hope you have a happy new year, Eebs, and that 2025 is a much less eventful year for you.  Incidental findings sometimes happen, but that is not the typical situation.  Keep us informed on your progress this year.

[mwatto]

Hi Eebs we are the same age. I am about  to have 6th MRI soon and will report back. I listen to music all day- will see what my audiology report is like this year but I am not aware of issues - last year was close to 90% hearing in that ear. I do get very bad ear pain especially lying down which often wakes me up. Never have found out why tbh (was suggested I have TMJ so not AN related ) but yeah was unable to sleep on that side since treated. This year asking for focus on facial nerve- last year asked on trigeminal. Its a mystery. Other than that I am really going well. When I get the nerve pain then full spectrum CBD resolves it for a while as does 1 mg diazepam (only need these when I get the nerve pain not every day).