Acoustic Neuroma Support
722 members223 posts

I'm scared

I havnt been diagnosed yet with AN, but my symptoms are what is given as AN.

In 2004 I had an unexplained neurological event, following this I had Vertigo for 3 weeks straight and had to be hand led everywhere. This eventually passed and then in 2010 I developed tinnitus along with the begining of loosing my hearing. In 2011 I developed unimaginable pain in my left ear, I was also on the road to having titanium Ross fixed to my spine, which didn't happen as the Avascular Necrosis and Osteporosis meant my spine wasn't stable enough to support the metal work.

When the MRI scan was done a few months later it was noted that my right jaw joint had died and crumbled away and was being held in place with a fibrous tissue called pannus, it was also noted but nothing was ever done about it but on the MRI scan it showed I had fluid / possibly Pannus in my Mastoid air cells. I was referred to the Maxilofacial team and because of my poorly lungs and having only 40% lung function I was then transferred to The Queen Elizabeth Hospital 180 miles away from home, here I underwent bilateral jaw joint replacement surgery on March 20th 2015, they did both because although my left side wasn't as bad but was heading in the same direction, due to my poorly lungs it was best to do both at the same time. All went well and my following check ups were good.

Then about August time in 2016 my voice became really husky, I was seen by the ENT team and said my Vocal chords and my oesophagus was inflamed, so I was given gaviscon, yuk yuk yuk, I was still plagued with the hearing loss and tinnitus, tinnitus itself is so intrusive and at times unbearable, I also have the hyperacusis with it. Then on the 29th November 2016 halfway during the day I developed the most unwanted head pain just above my left eyebrow, I took some paracetamol thinking it was just a naughty headache. The pain has to this day never gone away, I then developed server pain in my left ear, the first time my GP looked in my ear all was ok, then a few days later, upon another visit my GP couldn't even see the ear drum, I was given Otomise antibiotic drops, seemed to work for a bit. I continued to mention that I still have this pain above my forehead and sometimes it stings, more than 7 times I have been to the GP with this headache that never goes away. They thought that it was all due to my titanium jaw joints and we're happy to leave it untill I had been seen by my maxfax in Birmingham following my annual check up.

My annual check up was this Tuesday just passed, 07/03/17, On this day I was day 77 of having this pain, I was given Gabapentin by my GP, I was started on 300mg a day and was to gradually increase it untill I find I'm relatively pain free.... I went in to see my maxfax consultant whom I have a great rapour with, he flipped his lid when I told him, and he said if I lived in Birmingham he would urgently refer me to the neurology team, as my jaw joints are fine, I did tell him that I had told my GP many times that I know it's not my jaw joints, well putting all my symptoms together,

Loss of hearing mainly on the left


vertigo at times

Double and blurred vision in my left eye,

A hoarse voice

And now day 80 of this persistent headache

My Maxfax consultant is writing a letter to my GP as he is disgusted that I havnt been referred to the neurology team.

I'm so scarred as I know I was lucky to have been treated for my jaw joint surgery in Birmingham as this is where they bring our military personnel who are injured in Iraq ect, and I had a specialist anaesthetist who is excellent with those who are respiritary compromised.

I'm sorry to write such a long introduction......

6 Replies

I forgot to mention that I'm now on 900mg of Gabapentin 4 times a day, and 20mg of Amitriptyline and 1gram of paracetamol alongside the Gabapentin. This is onto of the meds I take for all my other conditions. I also take 80mg of amitriptyline and 25mg phenergan just to enable me to sleep at night as my tinnitus is so intrusive.


Sorry you are having all these problems! Definitely get a referral to neurology see what's going on! Good luck


Thank you for your reply lupie-cathy, my gp has referred me to the ENT team as he said it's the quickest route, I received a appointment for April 24th, but I got a call Tuesday just gone and they are seeing me this Monday coming. I will let you know how it goes. I'm just fed up of taking tablets just to get through the day. Xx


Good luck xx


Thank you xx


Unbelievable, best wishes


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