1st CK coming up, my AN looks like the size of a large plum.

[BigJoeBass48]

I took MRI on 2-8-2021 at Kaiser. The neurosurgeon phoned me for video conference on 2-10-2021. This was the first time I saw an image of my AN since 2017. Wow! In Jan of 2017 it was a fly spec, now a plum. 1.6x1.8x1.6. He says if I refuse CK then I have to do surgery where they drill a silver-dollar size hole in my head to dig the AN out, will lose all hearing in right ear. So I am driving 5 hours for a 15 minute procedure, then they say I can drive home. They say the "brain swelling", "severe tinnitus" "drooling" and facial pain where you feel crawling and tugging on that side of face won't begin for 6 months. That makes me feel better!

No episodes of Vertigo since 2-1-2021 since I had that 30 hour episode. Surgeon gave me valium I have not taken yet says Vertigo is not indicative of AN tumors but others say it is. A garbage dentist cracked a front tooth in October and tooth has to be extracted/implanted now. What fun.

[bjhk]

When will you have the CK?
 good luck, please keep us informed on procedure etc.

I will talk with CK Dr March 17 after March 8 MRI;
 but I am having someone drive me because recent past experience from a surgery tells me doctors tend to minimize after care......

[BigJoeBass48]

I had my 2nd teleconference today with one of the neurosurgeons at Kaiser in South San Francisco at Oyster Point. I have needed a hip replacement for almost 2 years, a left knee for 6 1/2 years,  they keep putting that off saying no elective surgeries during pandemic. I've heard some people can get them at Kaiser? Bit me. But they're really pushing this CK on me with gazillions of side effects.

Anybody know anything about the "team" at South San Francisco Kaiser? I'm getting a weird feeling about this. I am supposed to have it next month but why not just let the bloody thing grow and enjoy my hearing and sight and balance as long as possible then let them chop it out in a few years since hearing will be gone anyway. 70% chance he told me today.

[bjhk]

From the posts on this forum it appears you should proceed with the CK; otherwise it could push on the brainstem and cause other major issues.......

Here in FL they are doing elective surgery, but knee and hip are long recoveries and the CK will hopefully have no side effects other than the hearing loss.

I am having an MRI 2/9/21, then a teleconference 3/17 with radiation oncologist ; My last MRI in November showed the AN had doubled in size; my guess is it will have grown more, and I will have to proceed with CK

I already have some hearing loss, bought hearing aids, a brand that will work even if I have total loss in the right ear.

[BigJoeBass48]

I had my hearing test yesterday, 3-8-2021. I knew it would show some loss of hearing in that right ear. I just hope after CK I don't lose it all. The words sounded garbled since last year's test, I missed most. She mentioned 2 types of hearing aids for me. The CROS and the BAHA. Wow, they are pricey, I wonder what kind of warranty they have. $4,000.00 out of pocket. Kaiser does not pay anything. Well, I have no choice but to go for this CK and hope I don't lose my eyesight and hearing in left ear, just right ear. They say 0% chance of eye issues, 0% chance of left ear hearing loss though I have slight tinnitus some days. I've read of people on here talking of eye issues like dry eye, sometimes YEARS after CK procedure. They say 1-2% chance of balance issues or facial paralysis or feeling something crawling on my face. It just sounds horrible. I can just hear this one melodramatic surgeon saying; "Well, Joe, you waited too long, the CK was ineffective, now we have no choice but to do middle-fossa."

[bjhk]

Have you had the CK yet?

If so, please tell us about it.

[BigJoeBass48]

I am going 5 hours with a broken hip in a couple days to have some kind of mask made. Then I have to put in reservations at a pricey Hotel for the following week for 3 days of CK, 30 minutes per day. Then they say I can drive back again and have CK over 3 days. I will also have a brain scan and then an MRI at a nearby Kaiser Hospital this week in preparation for the actual procedure the following week. My right hip is gone and I also had a "mini-stroke" of my right eye, some kind of blood clot, I have had 2 shots in already but vision still blurred.

[bjhk]

Good Luck! !!!

I finished 5 sessions of CK 2 weeks ago; MRI was the week before.
Before each CK session they took an xray;   Dr said it is more precise that way.
No one here posted that they had xrays

So far fatigue is my only side effect;   hearing test in 2 months;  MRI in 6 months.

I did not have to drive 5 hrs;  just 1 hr each way and a friend drove me

[BigJoeBass48]

bjhk-----I start my 3 sessions tomorrow. The drive, uninterrupted, is 3 hours and 9 minutes. Last week it took 4 hours. The Hotel is letting me check in early. bjhk-----you mentioned a hearing aid which actually works on total hearing loss, what is that called? The Chinese guy doing the actual Stereotactic radio surgery says "no way" will any hearing aid work, he changes his opinions all the time but I have to go with him now or cancel for months and these doctors are fed up with my paranoid questions about all the side effects. So here goes. I have not had a Vertigo attack since 2-1-2021, sure hope I don't get that after or during the drive home. Their opinions are all over the place.

[bjhk]

I do NOT have total hearing loss.  Left ear has "fair" hearing; right ear with AN is not good, but it may get  worse from what the radiologist told me

I have hearing aids Starkey Livio Edge which ENT says are designed to crossover from bad ear to good ear IF I have total hearing loss in right ear.

I don't fully understand it.

I am glad your vertigo is gone, and good luck this week

[BigJoeBass48]

Thank you for this reply, bjhk. I had "Stereotactic Radio Surgery" over 3 days last week. The right ear still has some hearing. The 3rd and final (hopefully) treatment was done 5-2021 and it was at least 10 minutes longer than the first 2. I was vomiting all night and I went back and they gave me Zofram for 3 1/2 hour drive home. I'm still having some pain in gut and a tingling sensation on my back at night and short of breath, like a panic attack. I'm gonna wait a few days before I post to see what else pops up. Sometimes if I pull my right ear lobe down, I hear a "POP" and I can hear as well in the right ear as the left. Just plugged up for some reason. TY joe