Symptoms disappearing.

[davebanninga]

Hello everyone,

This is my first message on this forum.
i was wondering, I've been diagnosed with a VS in november after singel sided hearing loss.

They told me its a VS with cysts around it, they couldn't tell what the size of the tumor was, but the diameter of it was 40mm.
I'm 29 years old, but they didnt want to go for surgery immediately because i have almost no symptoms, and the my quality of life would probably be worse then it is now.

I had some slight dizziness, especially when laying down on my left side or if i made a fast turning motion with my head.
I had a bad stabbing headache in the left side of my head at the location of the VS and a headache in the back of my head/neck after bending over a pressure kind of headache.
there is some tinnitus but its negligible.

the weird part is, as long as i can remember i have those headaches and painkillers did not help.
Ive been taking a lot of supplements, like turmeric, Sulforaphane, and aspirin and some melatonin and some CBD along with eating healthy food.
All my symptoms disappeared, the headaches i had for years are completely gone, the dizziness is gone aswell all thats left is slight hearing loss and some tinnitus.

Could this indicate the tumor might be shrinking? Or is it common for symptoms to fade in and out at times.
what are you're experiences regarding symptoms, did they come and go.
Did the tumor spontaneously shrink in size for any one here, and if so did the symptoms also get less/ go away

English is not my first language sorry for the grammatical errors.

[MarlaB]

Find an experienced doctor who can accurately measure the tumor. The only way to know if the tumor is truly shrinking is by an MRI. Size and severity of symptoms don't always match, as you may have noticed. You even said you have hardly any symptoms other than hearing loss and dizziness.

That being said, I, had MASSIVE headaches for the 52 years prior to surgery 13 years ago.

My headaches are GONE.. I may have had one or two associated with a cold or something, but it's been a marked difference. And I have taken all the things for reducing systemic inflammation for many years.

I'm the opposite of many who get headaches AFTER surgery.

We find the things to be grateful for.

I chose surgery because after 8 consultations, that's what I felt most comfortable with. You do you. And know there is someone on this forum who has probably done the same. Wishing you the best.

[CA Marti]

Hi davebanninga,

I would think it’s a very good sign that your symptoms are going away. There’s really no way to know for sure if yours is shrinking without an additional MRI. Do you have another MRI coming up soon? I would definitely keep doing whatever you are doing and keep your fingers crossed. I would wait until there’s growth to do any treatment and maybe you’ll never have growth. I didn’t have any symptoms beside hearing loss and tinnitus, and those symptoms have stayed the same. I didn’t have any symptoms that came and went mine were pretty much stable the whole time with no changes. I thought I noticed some slight dizziness when moving quickly but apparently that didn’t mean it was growing because my most recent MRI showed shrinkage. My first one was 10.5 X 8.5 X 6 and my most recent was 5 X 6 X 7. I definitely wouldn’t rule out the possibility of it shrinking.
Best of luck to you and best wishes for stable or shrinking MRI’s!
CA Marti

[mwatto]

My AN was cystic- after the cyberknife it shrank and no cysts visible. No headaches but I do get stabbing pains in ear and eye still at night. Updating this: CBD THC tincture from a grower has made a darmatic difference to me- no nerve pain and sleeping soundly for first time in 4 years. No side effects- one week in.

[davebanninga]

Hi davebanninga,

I would think it’s a very good sign that your symptoms are going away. There’s really no way to know for sure if yours is shrinking without an additional MRI. Do you have another MRI coming up soon? I would definitely keep doing whatever you are doing and keep your fingers crossed. I would wait until there’s growth to do any treatment and maybe you’ll never have growth. I didn’t have any symptoms beside hearing loss and tinnitus, and those symptoms have stayed the same. I didn’t have any symptoms that came and went mine were pretty much stable the whole time with no changes. I thought I noticed some slight dizziness when moving quickly but apparently that didn’t mean it was growing because my most recent MRI showed shrinkage. My first one was 10.5 X 8.5 X 6 and my most recent was 5 X 6 X 7. I definitely wouldn’t rule out the possibility of it shrinking.
Best of luck to you and best wishes for stable or shrinking MRI’s!
CA Marti

Thats good to hear! so yours shrunk spontaneously without treatment ?
My next MRI is in 4/5 months, i'm kind of curious and weirdly excited for it.

The dizziness for me is the worst when i go from a sitting to a laying down position with my VS side on a pillow, comparable to standing up really fast for people without VS.

I have a appointment for a in ear hearing aid with tinnitus reduction, they expect they can at least temporarily get my hearing back to normal, and the tinnitus is the least of my concern its a real gentle soft electronic kind of whistle, like an old tv

Did you take any medications/ vitamins/ herbs which could possibly have helped it reduce in size or did you just continue life as normal.

[davebanninga]

My AN was cystic- after the cyberknife it shrank and no cysts visible. No headaches but I do get stabbing pains in ear and eye still at night.

My size was to big for cyber/gamma knife radiation, i believe my practicing surgeon told me incase i need surgery that they wanted to remove the cysts first to reveal the actual size, maybe they will do both if needed surgical removal and CK/GK after.

[CA Marti]

Hi davebanninga,
 Technically on my MRI reports they both say “stable” and “unchanged” although my most recent said “similar in size”. I haven’t had my followup with the neurosurgeon yet to confirm that it is reduced in size but the numbers seem to suggest that for me. I haven’t made any major changes in diet or medication.  I do take 1 baby aspirin daily, sometimes turmeric, and try to eat an anti-inflammatory diet somewhat and eat lots of fruits and vegetables. I’ve also tried to reduce my stress and do yoga a few times a week.  I have consciously tried to reduce my sugar intake and followed Derek’s top ten list for the watch and wait. I also stopped having dental X rays and don’t hold my phone to my ear because I read that a few other Ana members did this who have had good results. I basically have read almost every thread on this site and took notes on the suggestions by people who have had stability or shrinkage. It just made me feel better about things.
     I still have yet to confirm it is indeed smaller, so I am anxious to have that appointment. It has only been 2 years, so I’m just hoping for continued stability.
Best wishes,
CA Marti

[mwatto]

I had a cystic VS and these cysts disappearted agter Cyberknife (re the size of mine I had 3 fractionated) due to the location of mine I was told surgery a bit risky. Anyhoo mine shrank a bit once the cysts were gone after the first cyberknife. Mris since then say stable. Had no side effects ca hear ok and balance ok- however I do get occiptal neuralgia if I lie on that side. Only symptom from before and after is stabbing nerve pain in eye and ear at times. Mine close to trigeminal.

[CA Marti]

Davebanninga, just to update my last reply, it now appears that my AN may not have shrunk but is stable and the same size as my neurosurgeon’s fellow measured it as 9 X 6. Sort of surprised that the radiologist could have made an error of 4 millimeters. Anyway, just wanted to update this.
Best wishes,
CA Marti

[wandee]

Thank you for sharing this, Michele!

[davebanninga]

As a update, symptoms diseapearing do not go hand in hand with shrinkage in my case.

For me it was calm before the storm.
I'll make a post about it so who wants can read it