Acoustic Neuroma Surgery Wait Time

Edited , 5 users are following.

Hello,

I have recently been diagnosed with a 25mm acoustic neuroma. I am a 33 year old female in pretty good overall health. The tumour is pressing on my brainstem. I live in Ontario, Canada. I saw the neurosurgeon today and was told it is at least a 10 month wait for surgery. i was told some people wait over 2 years. Any Canadians who had an acoustic neuroma receive surgery? How long did you wait? 10 months seems long!

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  • Edited

    Hi Aemm,

    what where your symptoms for the acoustic neuroma? The ENT doctor refer me to have a MRI scan because of my tinnitus and I am soooo scared. How are you? Did you have the surgery?

    all the best xx

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    • Posted

      Hi Jeff,

      I had my MRI without contrast on the 24th of March and still waiting for the results. It's been 6weeks and I am so scared, the only symptom which I have is the constant tinnitus other then that nothing else. Probably I will have the results with the tumor 😦((... It's just a feeling but i'll keep you updated.

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  • Edited

    Symptoms for me were severe vertigo and hearing loss on one side. (March 1, 2018)

    Had an MRI that confirmed it was an acoustic neuroma the next day.

    "Gamma Knife" pinpoint radiation procedure was performed on June 29, 2018

    Most recent follow-up MRI shows procedure was successful.

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    • Posted

      My hearing on left side was lost as soon as the initial symptoms got bad. It never came back. No facial palsy... one reason I was so anxious to get the gamma knife so soon was that (according to medical experts) if the tumor which already messed up the 8th cranial nerve (hearing and balance) gets larger, it can damage the 7th cranial nerve which could cause loss of facial muscle control and that included being able to open and close the eyes. The prospects of having to sleep with my eyes open the rest of my life was a determining factor in my moving quickly.

      I had no side effects from the gamma knife...but my hearing which was already lost on the left side never came back. Them's the breaks, I guess.

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    • Posted

      That's sounds terrible. I had thought of not going back for another MRI unless it gets worse but I'll go, just I'm case.

      Sleeping with your eyes open, not a nice thought. I don't know what nerves are impacted with me, but I'll be asking.

      Thanks for the information

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    • Posted

      The neurosurgeon and oncologist I met with before deciding on going forward with the gamma knife radiation procedure asked if I was right handed or left handed. The oncologist acted like having a tumor on the left side and being right side dominant was not a good situation for whatever that is worth. If you are in the U.K. will your insurance cover medical attention in the U.S. - ?? The University of Pittsburgh alone has three gamma knife units and if I read correctly, all of the U.K. has a total of four(?)

      I spoke to them, Wake Forest, Barnes Hospital in St. Louis, and never heard back from Emory in Atlanta. Ended up going with Wake Forest and Dr. Chan was superb.

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    • Posted

      Google found at least one hospital in Australia with Gamma Knife when I looked it up. Hope you don't need it, but at least it's there just in case.

      Best of luck.

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  • Posted

    Hi Guys,

    I've got one too. Close to two years now. I seem to always have had tinnitus but it seemed to be getting worse, then without realising, I was losing hearing I'm one ear. The first sign was I was unable to tell what direction a sound was coming from... Next it seemed like I had pressure in my ear. Off to the ENT Doc I went..

    Anyway, mine is about 25mm. After the last MRI (I had two) I was told to go away and come back in about 12 months unless I had other issues

    Like you guys, I freaked a tad at first. I'm still not happy tho. The tinnitus in that ear is terrible and can be overwhelming. It never goes away and I can hear it even in a loud environment

    I'm keen to hear what you all went through and what treatment you had or are planning to have

    Jeff

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