Acoustic Neuroma Surgery Wait Time
Posted , 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!
0 likes, 18 replies
suzana86 Aemm
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
jeff75920 suzana86
Posted
Hey,
What happened with yours? Have you had the scan done?
suzana86 jeff75920
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.
jeff75920 suzana86
Posted
SIX weeks, waiting is way too long. There must be nothing to stress about if they are not chasing you.
beehoyal Aemm
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.
jeff75920 beehoyal
Posted
Did you suffer any side effects from the procedure? Face drop, loss of hearing?
beehoyal jeff75920
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.
jeff75920 beehoyal
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
beehoyal jeff75920
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.
jeff75920 beehoyal
Posted
I hope that I don't need that.... I'm in Sydney Australia
beehoyal jeff75920
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.
jeff75920 beehoyal
Posted
Thanks, I'll ask the doc when i go back.
It's good to hear stories from you guys.
beehoyal jeff75920
Edited
Check your inbox for a helpful tip.
jeff75920 Aemm
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
suzana86 Aemm
Posted
If I have the constant tinnitus does it always mean is AN? I had an MRI scan on the 24th of March and still waiting for the results. I chose to go without contrast, can they still detect the AN?
beehoyal suzana86
Posted
Not to butt in, but my first MRI was without contrast and they saw it. Your results may differ.
So long to get a scan read? You guys are not in the states, are you?
suzana86 beehoyal
Posted
I am in the UK. I guess if something was wrong they would've sent the results sooner 😦(...
jeff75920 beehoyal
Posted
my first was without contrast too. Not looking forward to the next one, not worried about the scan itself, more the results.