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New to forum and newly diagnosed

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Jodie:
Hi Everyone
My name is Jodie and I was diagnosed with an AN in March 2020. I would say 10 years ago I started noticing hearing loss in my left ear, in 2019 tinnitus started, by the beginning of 2020 a rumbling pulsating noise joined the tinnitus. This encouraged me to see the Dr who recommended a ct and hearing test, ct was clear. I sort of got on with things dealing with the noise. In feb2020 on a drive home from my block of land whenever I turned a corner a noticed a brief dizzy spell. By that afternoon I was barely able to walk and by the next day I was vomitting and couldn't even keep down water. Trip to the hospital and to a specialist and an mri.....diagnosis small AN. When I say small 4mm small!! This tiny little thing causing all this trouble. In hindsight I had been ignoring many symptoms, running into walls, dizzy spells, nausea, noise sensitivity. So my hearing loss is moderate to severe and Dr has recommended watch and wait. Has anyone had such a tiny tumour cause such strong symptoms, I'm guessing location is a big determining factor. Thankyou for letting me vent. Any feedback or comments are much appreciated!
Regards
Jodie

bfoley:
Welcome to the club that nobody wants to join, but everyone here is friendly!

I'm sorry for your situation. Small medium or large, its your symptoms that count and small can cause chaos!  Mine is "medium".  I cannot tell you what to do for your situation, I can only let you know what has worked for me.  I consulted 2 different AN facilities, talked to professionals who specialize in surgery and radiosurgery.  Both facilities said all 3 options could work for me (W & W, radiosurgery and surgery).  Constant tinnitus, dizziness and imbalance were the worse of my symptoms.  At one point I developed vertigo and knew I could not function like that.  I chose radiosurgery at the facility that handles MANY ANs per year.  (the other was closer but handled far fewer).  One of the studies I read showed more positive outcomes based on the number of cases seen per year.

I am one year out from radiosurgery.  Just had a follow up MRI.  Its 1 mm smaller (down to 18 mm at its longest point). I still have constant tinnitus, and balance issues, but I work on them daily and get in between 8,000 to 10,000 steps per day.  I take 1000mg ginger for the nausea associated with balance issues.  I am "profoundly deaf" in my AN ear, and wear a cross system in certain situations. I am wearing it less nowadays with WFH.

I would look at others stories, look on line for the most recent papers published with data.  A second opinion is never a bad thing.  Think about what you want for yourself, what outcomes are likely to be. 

I wish you nothing but the best care and outcome.  Hang in there and keep us informed of how you are doing! 

Greece Lover:
Sorry you had to join the club! One of the good, but frustrating, things about these tumors is that you almost always have time. and if you're on W and W right now, you've got a lot of it. It's also weird that tumor size does not always correlate with symptoms. 

But, yes, find one or two good doctors whom you trust and try to stay calm. Mental health is also really important with a diagnosis like this, something that the ENT docs and surgeons often forget.

good luck!

Jodie:
Thank you  both for your kind words and advice.
I am indeed w&w as which ever choice I make means I lose what hearing I have left. I do have daily balance issues, just little stumbles really but its ok. And you are correct about the mental side of it at no point has it been suggested I see a psychologist or anything with regard to managing mental health at all and for me I think that is the hardest part. Anyway, thanks again for the warm welcome to the club.
Regards
Jodie

Greece Lover:
Jodie,
I have seen a therapist several times related to my diagnosis and surgery.  It found if to be very very helpful.  Especially right now during the pandemic, most people are having mental health problems even without tumors!

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