Acoustic Neuroma Support
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Advice for Neurologist appointment

Hi Three years ago I attended ENT and after describing my symtoms and some tests I was advised I 100% had Menieres Disease and sent for a precautionary MRI. The MRI showed a small Accoustic Neuroma 3mm on my left side.

I had never heard of either before. I was given medication for the Menieres and put on Watch & Wait for the AN. No problem happy to have finally received a diagnosis and medication. I wasn't that worried about the AN as it is so small. I had MRI last May which confirmed no growth of AN.

Three years later I still have my original symtoms despite faithfully taking the prescribed medication. I have been raIsing the issue of the continuing symtons with my ENT consultant and Registrars for at least a year and last month I was advised I did not have Menieres and have been referred to a neurologist. The ENT Consultant advises the symtons are not due to the AN.

Vertigo has also been ruled out by both the ENT and the balance test. The balance test confirm 'definitely have something wrong with your right side but not vertigo'.

I thought I would describe my symtoms and if anyone in the group has experienced similar issues I would appreciate any information or advice they can give me.

My symtoms are:

Sudden dizzy turn with no warning feels like my brain is inside a washing machine, cant see, cant move and on occasion simply fall over during this.

When out walking my brain tells me I am veering way over to the right side but in reality I am walking straight with my husband.

Sometimes just simply fall over to the right side with no warning.

Head feels foggy for a short time following this my right eye drooping - the first time this occurred I was initially told this was Bells Palsy now these episodes have gradually increased until I have had 9 episodes in last three months. From my forehead to my top lip feels numb and the last occasion my tongue felt numb too and I am very tired for at lease two days following episode.

Recent visits to GPs re this I have been advised it's not Bells Palsy, don't know whats causing this to it's just one of these things!

My hearing rarely affected and no headaches.

My balance is usually affected on the same day as theses episodes eg I'm standing still or walking next thing I'm taking three or four steps off to the right. My spacial awareness seems off constantly walking into the door frames,clumsy and dropping things.

It takes about a week or longer for my eye to return to normal.

I was advised at the ENT if the AN doesnt grow before I am 70 I will not receive treatment for it. I am 65 this year and really woud like this problem accurately idenitified and hopefully treated.

Any comments or experience similar would be great help. I have appointment with a Neurologist in February and would appreciate any advice. Thanks

4 Replies
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High Jackie, what a bad time you are having. I was so sorry to read your post. Despite me having three neuromas on my left side aged 50 I didn't experience the problems you are having before surgery but did have some post op. Please continue to pester your medical professionals to come up with a answer and my best wishes for the future. Keith.

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Keith thanks for your advice and information. Hope all well with you now. Jackie

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Jackie:

It sounds like your small AN is pressing on your facial nerve, causing your facial problems. See the photos at this link:

google.com/search?q=8th+cra...

Also, check out the following websites for more information on your situation:

google.com/search?ei=6GlwWs...

I hope that this helps you to understand your situation.

Dean

Reply

Hi Dean thanks for this information I am going to discuss it with the neurologist on Friday. Jackie

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