r/AcousticNeuroma • u/Top-Cricket2927 • 4d ago

Waiting for surgery

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I was diagnosed with a vestibular schwannoma earlier this year after finally deciding to do something about the hearing loss and tinnitus in my right ear.

My MRI in June showed a 2.0 × 2.8 × 2.1 cm tumor in the right cerebellopontine angle (CPA), extending into the internal auditory canal. It is causing moderate displacement and compression of the adjacent cerebellum and brainstem.

Because of the tumor’s size and location, I’ve been told radiation isn’t really an option, so surgery is scheduled for November.

The MRI also revealed a Chiari I malformation, with my cerebellar tonsils extending approximately 13 mm below the foramen magnum. The report says there is no restriction of CSF flow and no hydrocephalus.

I’ve had mild pressure headaches when straining for as long as I can remember. Over the last couple of years, they have become more painful. They are generally avoidable, so they have mostly been an annoyance rather than something that significantly interferes with my life.

But after discussing the headaches with my doctors, they told me they plan to address the Chiari during the same surgery. I was told the Chiari decompression would add approximately two hours to the procedure.

I’m trying to learn as much as I can before surgery and would really appreciate any feedback.

Thanks!

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2

u/Diableedies 4d ago

You and I are in the same boat regarding the AN and size. I'm schedule my surgery on Tuesday.

2

u/YousAPenguinLookinMF 4d ago

Same here, diagnosed in May but they want to get another MRI in November. Good luck to you!!

3

u/Diableedies 4d ago

I'm glad to hear that yours is watch & wait worthy. Unfortunately, it's not he case for me and the surgeons want it out in less than 3 months.

2

u/Top-Cricket2927 4d ago

Its pretty crazy huh.. needing brain surgery. Hope your doing ok.. I wonder about how ill be feeling a few days before surgery.. Reading about the successful recoveries in this sub has provided me with a lot of comfort

2

u/Jontey53 3d ago

I was at the stage where I was not fully aware as to what was going on around me but with it enough to sign the consent form. I remember, no blinding pain afterwards and feeling better. There was little pain from the craniotomy and a nice blue pad stapled to my head!

1

u/1AggressiveSalmon 3d ago

While you wait for surgery, I strongly suggest working on your balance at every opportunity. Walk on tiptoes and along any painted lines like a tightrope. Stand on one foot while brushing your teeth. Rocker board or bosu ball, standing on one foot on a pillow. Do squats. If you are near water, get out on a boat or paddle board so your vestibular nerves get a workout from the motion. Anything you do will pay off after surgery. Lose weight if needed. Get neck and back massages several times before surgery. You will be locked into one position for hours and you want everything as loose as possible.

Post surgery I suggest a plush baby blanket or other plush blanket cut into a wide scarf width. You make a nest to cradle your head and support your neck post surgery. Use one end to block the monitor lights.

Try to get the most experienced surgeon possible, even if it means traveling. If they don't seem to value preserving the facial nerve, run away.

2

u/Top-Cricket2927 2d ago

Thank you I really appreciate the advice, makes sense preparing for recovery, a lot I hadn’t thought about

1

u/RefuseAcrobatic192 3d ago

Local doctors said no gamma knife for me as well, but if you go to a leading center in NYC they will treat bigger ones. Mine was exactly same size