Author Topic: Anxious newly diagnosed  (Read 502 times)

Mariskak9

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Anxious newly diagnosed
« on: September 21, 2017, 11:19:42 am »
Hello all - I didn't know this "club" existed until June as I was diagnosed with a small AN (1cm).. after many months of more frequent bouts of extreme vertigo, unsteady balance, head feeling full and ears never popping, tinnitus, and headaches, my friends and family encouraged me to see a doctor.  I chose an ENT expecting to have fluid or something in my ears and get a 'script for dizziness and nausea, instead after a hearing test he discovered hearing loss in my left ear and asked to do an MRI w/contrast and balance testing to "rule out" rare tumor ... and I got the news of the small AN and 19% balance loss (caloric test with water in ear didn't phase me) and started researching AN and found this helpful and informative discussion.  I have all the mentioned symptoms daily and am careful walking, driving, riding bike, and exercising as I don't know when the room may start to spin or I might lose my balance .. and some days I feel like I can't seem to focus at work no matter what I try to do  :( .. I seem to do better during the days but in the evenings when it gets quiet I get anxious and often have difficulty sleeping ..
So .. it looks like surgery is recommended to try to preserve my hearing.  I've read so much on here about watch and wait and it seems that most in that category don't appear to have multiple symptoms as I do .. I'm "over" getting dizzy etc daily but at the same time I'm anxious about surgery and what to expect .. there doesn't seem to appear to be an urgency to schedule the surgery and next step is to meet with the neurotologist who partners on the surgery for an audiology test of my "serviceable" hearing to see if hearing can be preserved and to see what might be done to relieve the vertigo.
...feeling anxious and not sure what to expect .. any thoughts appreciated  :)

Director

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Re: Anxious newly diagnosed
« Reply #1 on: September 21, 2017, 12:10:20 pm »
HI Mariska- Sorry you have joined the club that no one wants to be a part of, but glad you have found this forum. ANA recommends you get at least a second opinion about treatment options. You should take the time to research thoroughly and consult other doctors. I know the good folks of this forum will provide you will advice, and please feel free to contact us at ANA anytime.

ANSydney

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Re: Anxious newly diagnosed
« Reply #2 on: September 21, 2017, 05:23:45 pm »
Welcome to the forum Mariska.

It seems that your main motivation for surgery is hearing preservation. The best way to retain hearing for as long as possible is observation. There are many published studies cited here on the forum that indicate this. In fact I was ready one this morning on the bus ( https://www.ncbi.nlm.nih.gov/pubmed/18559028 -  I have the full paper). The last two posts in this forum of people trying to save their hearing with surgery are now single side deaf.

It appears your most concerning problem is balance and dizziness. Why not consult a vestibular therapist to see if they can help you. Your PCP can provide a referral.

Surgery has all sorts of risks such as single side deafness, facial nerve damage with some so bad that you can't blink, which require constant care or you could go blind, CSF leak, meningitis, headaches, additional damage and more.

In the words of Dr Micheal McKenna, "“The best treatment is no treatment, if you can do it” ( https://www.anausa.org/resources/videos/support-group-video-library.)

Do your research. This is one area where intensive research is worthwhile.

Given that your symptoms are fairly recent and significant, I would speculate your tumor is still growing. A series of follow up MRI will tell you both growth and rate of growth with time. Tumors tend to slow down with time and growth after four years from diagnosis is "very rare" ( https://www.bhtinformatie.nl/pdf/ingrijpen.pdf )

v357139

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Re: Anxious newly diagnosed
« Reply #3 on: September 21, 2017, 06:12:39 pm »
Mariskak
Definitely good to get a second opinion.  Also good to educate yourself on treatment options.  Surgery, radiosurgery, wait and watch.  I had several doctors tell me surgery was best, then a highly respected radiosurgeon said I was a great candidate for radiosurgery.  Each doctor is different.  If you are interested in hearing about radiosurgery, see a top radiosurgeon.  If you are interested in hearing about surgery, see a top surgeon.

Once you educate yourself, you will be able to ask the doctors better questions.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!