Where next?

[Kenmore78]

Hi all, I have been undergoing investigation for six months for symptoms that started July 2020, but got significantly worse June 2022. Started with soreness deep in right ear when putting stethoscope or earbuds in,, progressed to eye twitch, severe headaches, full feeling in ear, tinnitus, full face twitches right side, blurry vision and dizziness occasionally. I had MRI without contrast in November. Started Gabapentin December, and having to increase dose about every two weeks. Have had ear checked multiple times, recent audiology shows slight hearing loss in right ear which I have noticed. ENT feels its not ear related at all, and that it's retro-cochlear, and spoke to me about acoustic neuroma. GP reception has just advised MRI normal. Where do I go from here? Ask for MRI with contrast? Neuro referral? I'm struggling a lot mentally now 😪 and worried about having to wait another minimum three months to have further diagnostics.

[MitzyAnn]

I presume you had the right kind of MRI? (IAMS?)

[Kenmore78 in reply to MitzyAnn]

Hi MitzyAnn, sorry I don't know what IAMS means? It was a diffusion weighted MRI

[whiteleye]

I think another MRI with and without contrast would be a good idea. Most people with an AN diagnosis have significant hearing loss on the AN side (I am completely deaf on that side). Good luck!

[Kenmore78 in reply to whiteleye]

Thank you. I feel back to square one as GP is insisting its migraines.

[Thyroid95]

hi, my issues started out similar to an ear infection. I went to an ENT who said my ear looked fine but I had hearing loss. He ordered an MRI and a cochlear schwannoma was discovered. He said that was what caused the hearing loss but the t terrible ear pain, burning in my ear, pAin in my cheek and jaw and neck pain were not related to the cochlear schwannoma. I was prescribed gabapentin for the nerve pain but said it was probably referred pain. I have seen a dentist who specializes in TMJ and he suspects I may also have Eagles syndrome. This is an interesting diagnosis and hoping to get more answers.

[Kenmore78 in reply to Thyroid95]

Has anyone told you of all the symptoms are due to the syndrome then? I hope it means you can get them sorted