ANA Discussion Forum

General Category => NF2 => Topic started by: Xign on December 20, 2015, 02:35:20 pm

Title: I'm really worried about my Acoustic Neuroma :(
Post by: Xign on December 20, 2015, 02:35:20 pm
In July 2009 I had Gamma Knife on a 3.7cm left sides Acoustic Neuroma. Since then the tumour has shrunk to around 2.7cm. These are at the widest point.

In October of this year I developed facial paralysis. It was diagnosed as Bells Palsy. I have been recovering. I had a CT scan and the results were severe facial nerve swelling.

On Wednesday of this week my face began losing some of the strength I regained. On Thursday I woke up to a blocked feeling in my ear. Everything sounds like it's underwater. Loud noises echo. I can't understand most of what's said.

I went to my GP and he said I have ETD and has prescribed some decongestants. They're not making any difference.

I emailed my NF2 nurse and am awaiting a reply.

I know CT scans aren't as reliable as MRIs. I think I need an MRI here because I really don't like what's going on. Everything just seems to have happened suddenly. My ENT before said the facial weakness is unrelated to the Acoustic Neuromas as weakness wouldn't come on suddenly. But now I got this hearing loss it just seems too much of a coincidence?

I'm not going to lie I am really scared. I know that if this tumour has grown, and needs to be removed not only will I be deaf but also I'll probably have full facial paralysis, due to the effects of the GK. :(
Title: Re: I'm really worried about my Acoustic Neuroma :(
Post by: Xign on December 20, 2015, 02:41:42 pm
Full facial paralysis on the side of the Accoustic Neuroma I mean.
Title: Re: I'm really worried about my Acoustic Neuroma :(
Post by: jim j on May 16, 2016, 04:26:16 pm
 :)Don't Worry  But I would like to say I had surgery on my large acoustic neuroma in 2003 and just had it grow back and had Gamma knife in February. I would not recommend a ENT for this but a Good Neuro Oncologist. I went to my ENT for the new growth and he wanted to wait and see, I was concerned as I had not been feeling right and having Head issue's and my eye was drooping, nose leaking. I went to my Neuro surgeon who sent me to a near oncologist who deals with just Gamma Knife and Neuro oncology. I think you should have an MRI with contrast as you are right in saying a CT scan is not as accurate. You have to be pro active for yourself not reactive.I am sure it can be properly diagnosed by a good Neuro Oncologist. Don't worry as worry only causes stress and that can be just as bad as any Acoustic Neuroma. You can and will get through this and come out on the right side but I always take my health in my hands. This is your head and you can do this with a good out come I wish you the best good Luck an stay positive.