Last year, out of the blue, I developed pulsatile tinnitus (wooshing noise in my ears, more on left side) I then went onto develop headaches which were affecting me at night. The headaches worsened to the point I could only sleep on my left side. I seem to be experiencing occipital neuralgia and if anything touches the back right of my head it sets off the headache (even putting my head on a pillow). The headache feels like pressure all over my skull. When I sit up the pain moves to behind my eyes and then feels like a migraine. I also have flickering / twitching of my eyes. I was prescribed clonazepam which has helped the tinnitus and occipital pain at night. Audiology picked up dysfunction in my hearing during tests and so an MRI / MRA was arranged due to suspected AN. I was scanned on 23 Feb ruary 25 and received a call from ENT recently to book me in to discuss results on 13 March 25. I am nervous about the results. Just wondered if anyone else has experienced any of the symptoms above prior to or after their diagnosis?
Suspected AN : Last year, out of the... - Acoustic Neuroma ...
Suspected AN
Hi I had similar symptoms in terms of the tinnitus and hearing loss and some base of skull pain . Had MRI last October results November showed 22 mm AN . I’m now on watch and wait with a re scan in October . Your neurosurgeon will discuss options which very much depend on location and symptoms not necessarily size as folks with much smaller AN than mine have had different treatment plans . I believe the main aim is to preserve hearing so watch and wait is a plan of choice in many cases . It’s difficult to get your mind around having something in there but I’ve accepted the best course of action for me is watch and rescan . Bear in mind if it is an AN it’s non invasive and benign and there is a lot of support out there . The BANA if you are UK based is a good place to check out . I was given their contact details by the Neurology team . Hope all goes well for you on 13 th 👍
Thank you for your reply. That was really helpful. I have checked out BANA now you mentioned it and I’m glad that there is support available if needed. Just preparing myself for whatever the outcome might be. It was interesting you mentioned that treatment depends on the location and symptoms and not necessarily the size. If it turns out I do have an AN at least I know to ask more about that at my appointment on Thursday. At present the headaches caused by the sensitivity on the occipital part of my head seem to be bothering me most at night. I’m taking clonazepam which is helping the tinnitus and headaches but I really don’t want to be taking it long term. I play guitar but have been struggling with that (until I found out I had issues with my hearing I kept thinking my guitar was out of tune!). Do you know if there are any hearing aids that help when you have a AN? And if there are issues getting travel insurance?
Hi there I’m still waiting for my NHS audiology appointment in April but I am trialling phonak aids privately at the moment , I’m a gadget person and like the idea I can control from my phone depending on environment and charge up overnight rather than changing batteries 😂 . They do help, I’ve 40% LF loss. I travel frequently and my insurance was fine post diagnosis , I’m covered until renewal then I’ll no doubt have to pay a premium . If gamma knife or surgery there is a period you can’t fly but I’ve read folks successfully had insurance for travel after that period . Hope this helps, your team will be able to answer these things for you on Thursday , keep positive .
Hi, just to say, yes, hearing aids can definitely help, especially with the tinnitus whilst wearing. I travelled before and just after treatment, with no issues around travel insurance or flying soon after, attending a music festival in Spain only 12 weeks after cyberknife on a 25mm squatter. ( probably did more laying around in a hammock then dancing than usual though!) Long haul too. No issues. Really good to ask about the impact and outcomes for the various options ( watch and wait, radiation in various form, surgery) and definitely know you’re not alone, lots of support out there from BANA or Brainstrust ( they have peer supporters and groups specific to ANs) should this be the issue for you. Let us know how you get on. Lin 😎
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