Hi All,
So glad to have found this place and to hear all the stories which, while sad to read, also come as comfort that there is hope!
I developed what I thought was BBPV on the 18th November 2024, quite sudden onset over a few hours, As the day progressed I developed really bad rotational vertigo and could barely walk to the train from the platform without nearly vomiting, every movement was gut wrenching.
I spent the next week trying to stay still and things slowly improved as I expected it would. I then started to get a deep ache in the ear that I was sure was affected and noticed some tinnitus. I knew that this wasn't right so went to se my doctor as I was worried I had an AN or MS (I have a family history of MS). My doctor was very relaxed, looked in my ear, said I had an infection and tried to give me antibiotics which I flatly refused and said it wasn't an infection as the symptoms didn't fit.
I went home and got an appointment with an ENT consultant a week later, he agreed something wasn't right, checked my hearing which was reduced in my left ear and we got an MRI. On the 17th December I got a call saying it wasn't MS but was an acoustic neuroma/vestibular schwannoma, my first response was "I knew it was, I said it wasn't an infection".
I was referred on to an ENT who specialises in AN's who showed me the scan it was 14x8mm and the Facial nerve and auditory nerve were displaced and obscured in the IAM. By this point I had started getting some tingling sensations in my face and was getting pain in to my ear, mastoid and my neck and a few pains around my mouth on the left. He said I should get a repeat MRI in 6 months and didn't see concerned about my facial symptoms as the tumour wasn't touching my trigeminal nerve.
Since then I have had worsening tinnitus and 10days ago started with sudden severe pains shooting in to my face and the pain in to my mastoid and my ear is worse, it throbs and i'm getting pain in my upper left lip and jaw. I have a dry left eye that's quite sore (using lubricating drops every hour) and have seen my family doctor who has given me pregabalin which helped initially but the pains have returned again today and the tinnitus is louder and I keep losing my balance.
Im really not happy at having to wait until June for another MRI. Are these symptoms normal? Should I be getting something done? I'm worried that now i've got these symptoms that if I have radiation therapy any inflammation will just make things worse and have a higher risk of causing facial paralysis. Does anyone else thing I should be getting a 2nd opinion? My wife thinks my lower lid looks a little saggy today which is obviously more of a concern and it does feel a little odd...