New to forum and newly diagnosed

[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!

[Jodie]

Hi
Yes I am considering seeing a psychologist at some point, I do believe it may help me cope better on my down days. 

[DJ68]

I was diagnosed in August, 2020 with a 2mm tumor. My second MRI in March of 2021 it remained stable. Just had my third MRI and it shows 0.3 cm which I guess is pretty much the same as 3 mm. I am not really up on my metrics. I will talk to my doctor and have an additional hearing test on Wednesday. I am thinking ahead that he will say to still wait and watch and go to every six months for an MRI. I am new to all this and this forum. I really need to have this support. I do not know what the future will hold and try to stay positive. Being I am 'older' I do not think jumping into surgery is my doctor's first choice. Looking back I just thought everyone had tinnitus and sometimes a bit dizzy. Then I had a dentist appointment and while bringing the chair up after work on my upper teeth, I could not even get out of the chair. This went on for days but only on my right side where the growth is. I look forward to connecting with others with this condition and seeking extra advice on what to do.

[donjehle]

Thank you for posting your story, DJ68, and welcome to the club that no one wanted to be a part of!

My AN was about the same size as Jodie's (who started this thread), and maybe a tiny bit larger than yours is now after your third MRI.  It is very typical for doctors to recommend the watch and wait approach for our small Acoustic Neuromas and to do an MRI every six months to monitor its growth.  While waiting, I lost my hearing in my left ear which wasn't so bad when I agreed to W&W.  I'm now deaf in that ear and will need to have a CROS hearing system fit for me next month.  I also had balance issues, but I have taken vestibular therapy from a good vestibular therapist which has helped my balance tremendously.

In fact, last Friday I went in for an assessment on my balance and fall risk.  My therapist told me that the average score for someone my age was 68.  At my first assessment, I scored a 38 and was somewhat of a fall risk.  My vestibular therapist told me on Friday, she was hoping that I might make it to 62, to be closer to the average score for my age.  I actually scored a 73, which was five points better than average.  She told me that I did not need vestibular therapy anymore.  And I do feel much better and walk more confidently.  I have not used my cane for a few weeks.  So, I would encourage you to find a good vestibular therapist in your area to help with your equilibrium.  Don't just seek a regular physical therapist; go to someone who is trained in dealing with those of us with vestibular schwannomas.

Also, you know your metrics better than you think you do!  A 0.3 cm AN is the same as 3 mm.  My neurosurgeon at Emory said that he would never recommend surgery for tumors that small.  He told me that, if treated, he would recommend gamma knife for me.  That is less invasive than surgery.  If the tumor grows large, however, then GK may not be an option.  Being yours is so small, you have time to learn all you can about all the treatment options available to you while you are watching and waiting.

Best wishes for your journey!  Be sure to update your progress (as we will be rooting for you!).
Don

[lryan42]

Hi,

Welcome - and sorry you're here with us.

I think a ton depends on where your tumor is.  Mine was even smaller than yours when first discovered and it a as really messing me up vestibularly.  My hearing loss came relatively late (3-4 years or so after the first vestibular symptoms).

At least for me, surgery has been an AMAZING improvement in my quality of life.  I haven't walked into a single wall or doorframe since my surgery last week.  And before surgery, it was a constant occurrence.

Good luck and hang in there.  This forum is a great resource and a very supportive group of folks who have been there, done that.

Again,  welcome.
L

[skier]

Hi,
Is that why I walk into doorframes? I guess it is. I am not kidding, at all. I have only been diagnosed since Oct. 2021, with a small AN.

Like some of you, a small AN has managed to cause a lot of symptoms. Balance troubles have seen the most manageable, but I might be kidding myself a little bit. Fell last week. Again. This time I hurt my hand.

I have yet to be referred to a vestibular therapist, and I will ask for help with this soon.

I have lost most of my hearing in the affected ear. I have tinnitus, but I'm grateful it is less obnoxious than it was from a year ago until Nov. or so, when it lessened for reasons of its own--or maybe because I lost more hearing?

I have had facial little muscle spasms - and these have lessened, which really helps my state of mind. I don't know why, but I do recommend Dr. Chang's new video presentation here on facial nerve issues. It gives me confidence that my situation is not an emergency because my facial nerve is "over-excited", and causing some random over-firing of the muscles. It's OK. I was mostly worried I was about to have facial paralysis, but that is very very unlikely pre-treatment.

Still working towards a treatment plan, and looking forward to a consult in Boston next week. I'm hoping this visit leads to a Cyberknife treatment plan, as I think radiosurgery will be safer for me and very effective. 

I don't have any advice for anyone, but I wish everyone lots of support. I am getting more accustomed to being very hard of hearing in one ear, and it is getting easier. But the whole psychological adjustment to all of the AN symptoms has been A LOT. As I get a little more comfortable with the eventual treatment, and a little less panicked, I am noticiing a lot of grief and loss, and change of my personality. I will have to work on my resilience and recovery ... forever, I guess.

Be well.
Skier

[donjehle]

Thank you for posting again, skier!  It sounds like you have made some great mental and emotional strides while dealing with AN.  You were diagnosed one month before me, so I feel a kinship to you.

You spoke of falling.  I fell one time trying to bend over to get my shoes out of the closet and fell into the closet.  Another time my dog ran in front of me.  In the past, I could have easily stopped, but this time I could not and I fell, but fortunately my couch was nearby, and I fell into it without hurting myself.  When the vestibular therapist did her initial assessment of my balance and fall risk, I fell five times.  Fortunately, I was in a harness with a support rope attached, so I didn't go all the way to the floor.  But she told me I was a fall risk.  Vestibular therapy has helped me a lot so I am glad you are going to ask about it.  I am so glad my neurosurgeon gave me a referral to one in my area.

Thank you for sharing your recommendation on Dr. Chang's video.  I have watched about 40 of the ANA videos, but I have not yet seen Dr. Chang's on facial nerve issues.  I will watch it!  I appreciate that recommendation!

Like you, I think that as time passes I am also getting more accustomed to living with the AN symptoms and have grieved over my loss of hearing.  Many here have had to seek psychological help to be able to deal with all the adjustments we have to make mentally.  I am not seeking a counselor, per se, but I am seeing someone on a regular basis who is seeking to become a life coach.  Since he does not yet have his certification, it costs me nothing, but it seems to help to discuss it with him and listen to his counsel. 

The ANA forums for me are also very therapeutic as are the support groups.  When someone posts great results from their treatment, it encourages me that my treatment could eventually be good like that.  When someone posts their challenges and difficulties, it encourages me to hear of their courage and fortitude in dealing with something none of us should have to face.  Whatever troubles arise, I see them as heroes facing troubling situations with incredible bravery.  It inspires me to want to be resilient as well.

So, I am definitely rooting for you, skier, and looking forward to hearing how your consult goes in Boston next week.  And then I will be wanting to know how your Cyberknife treatment will go!  So, keep updating your story!

Best wishes for a great future!
Don