Hello - Just diagnosed trying to figure things out :)

[Amy1111]

Hello -I am in Western MA.  I was just diagnosed w an Acoustic Neuroma by MRI w contrast. Just got results on May 1st. Report says :There is Enhancing lesion in the left internal auditory canal which protrudes into the cerebellarpontine angle cistern consistent with a vestibular schwannoma. This measures @ 14mm transverse x 9mm AP  x 6mm cranioaudal. Brainstem appears normal. Fourth ventricle is in the midline.

My GP has referred me to an ENT-- the 1st available appointment anywhere thus far across the state is July 19th , at a satellite office of MA Eye & Ear. The Boston Eye & Ear main hospital told me the 1st available opening was not until January of February !! This is the beginning of May  Is it normal to have such a long wait?

If anyone has any insight on my report, or advice in general, please feel free to share with me.   I have been reading a lot and am familiar w treatments but of course there are still so many questions. Mostly timeline and appointments - choosing the best Dr. etc.

--> I have had 2 past CT scans of my head w out contrast which were "normal" , no findings.  Both times were ER visits from HORRIBLE SUDDEN vertigo. Tumbling and spinning . Vomiting - and all other bodily functions lost all together beyond my control. Inability to speak or think. The 1st  was @ 5 years ago , the 2nd was  last March 2023. They feared stroke thus the CT scans. No stroke   "Vestibular neuritis" was what I was discharged with the 1st time after a few days stay -- last year it was "vertigo". Each time the vomiting and spinning only stopped after anti nausea meds + IV Prednisone. Walking was difficult days after. I have had a few mini vertigo attacks that were short lived but passed and did not require a hospital visit.

Over the past 5-6 months I have begun to get headaches way more often than usual -daily at times @ 5pm or upon waking- cluster type behind my left eye-(but I do have pinched nerves  cervical spine also )  I have mild ringing in my left ear, pretty much always , but ignorable - It's worse when it's quiet - I keep white noise + fans on -- at night when I lay flat  in bed ringing is louder. I haven't noticed any hearing loss. I do have periods where ear feels full or clogged and my jaw at same time in very back at hinge area kind of dull numb. This had decreased since i started taking allergy medicine daily.  I am a bit unsteady wobbly on feet but I have always been clumsy ) I have found my self queasy more as of last 2 months- car sick feeling almost and especially when in restaurants or busy gatherings. Weird. I know.
Thanks for listening . I look forward to any advice )    ~ Amy

[UkulelesAreAwesome]

Hi Amy. I was diagnosed with AN similar to yours. Left ear, similar size, but I had already lost most of the hearing in the ear. I was sent for the MRI when I failed a hearing test. I was diagnosed in April 2022. I was referred to a neurosurgeon and met with him in June 2022. He only does surgery. I had decided on radiation so I was referred elsewhere and met with doctors in July 2022. I had gamma knife in August 2022. The head frame is not as bad as it appears. I was not back to normal in 2 days like some people. It took time. I had vestibular rehab in November 2022 but the balance problems occurred a few months later. I had my one year MRI the end of July 2023. Everything looked great.  A few months ago headaches got worse and facial spasms started. I had an early MRI last month. It shows my tumor has increased. They're not sure if it's swelling or growth. So I need another MRI in October and may find out if I need surgery. I don't want surgery.  Headaches seem to be common for most of us along with constant tinnitus, vertigo, balance issues and ear fullness.  I have great days and bad days. The wait from one appointment to the next certainly does feel like an eternity though, doesn't it,? It's not easy to adjust to a new normal. It's not easy to identify as a brain tumor patient.  For the most part, things went as expected for me and went well up until recently. I live in a small town so my neurosurgeon and neurotologist are 3 hours away but always available by phone or within the my chart app.  I had avoided research of surgery but have started looking into options just in case. My understanding of the Mri report is that the tumor is attached to the nerves and in your case (and mine in 2022) it's growing toward the brain. Mine has increased enough to be leaning on the brain and making contact with the brain stem but I'm very hopeful it's a bit of delayed swelling. I've read there are cases of pseudoprogression at 6 months and delayed pseudoprogression at 18 months. So I'm hanging in there and not making any hasty decisions about surgery. I sleep more than I used to. I exercise some but I don't overdo it. I understand how you're feeling.

[skier]

Hi Amy,

Sorry to hear about your having an Acoustic Neuroma. My AN size and symptoms were similar to yours in Oct. 2021 when I was diagnosed.

I'm also in rural New England, so I had some of the same questions about how to find expertise. I considered Boston hospitals and MDs, as well as the Mayo Clinic (MN). I had surgery at UCSD, choosing to travel to San Diego for the best surgical team in terms of reputation and published outcomes. I felt I could trust in them. It was a great decision for me.

By the way, Tufts U. Medical Center has a surgeon Dr. Carl Heilman that many ANA forum patients have said great things about. Maybe you could consult with them? It's in Medford/Boston area. They have a team, and can discuss surgery or radiation, is my understanding.

(For more on my history, you can search on my nickname (skier) and read other posts. It might give you some ideas. It was an imperfect and slow process, that I went through, I think, but it worked out in the end. I hope you find a doctor you trust soon, to make it easier.)

Your symptoms in your last paragraph all sound typical to me as a patient. The acoustic neuroma has many potential side effects, unfortunately. Everyone has slight variations, but yours all sound familiar.

By the way, if you can get Vestibular rehab (physical therapy), it can help you now and in the long run. There are specialists in neurological problems who can help with balance issues. Try to follow-up on that if you can. (I regret that I waited two years!)

Since surgery, I am deaf in one ear, and I still have tinnitus, but the wonky head/headaches, facial twitches, and balance problems are now in my past. Those are resolved--and the tumor is no longer pressing on the brain stem, so my heart rate is back to normal.

And--the tumor is no longer a threat to my well being as it was removed (total resection). I have adapted and have no regrets. I consider myself lucky. Not too many decades ago, the prognosis for these tumors was much worse.

All best,
Skier

[Amy1111]

Thank you !   It is so nice to hear from others and advice is so helpful & appreciated.

[stevehernes]

Stay strong, you are definitely not alone here. It's important to remember that there are resources and support systems available to help you.

[DanFouratt]

Amy,

Sorry you are here but the support you get from this group in great.  I had an VS and chose radiation last fall.  I spent time looking at options.  If you send me your email to my email Dan4att@gmail.com I will send you my work.  It may help you move more quickly through the decision journey.

Dan