AN Community > AN Community

New to forum and newly diagnosed

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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

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