2 Year MRI Update

[Vivian B.]

Hello Everyone,

I wanted to update you on my 2 year MRI results of June 2012 following GK in June 2010 at Toronto Western Hospital . I am glad to report that the tumor remains unchanged. Follow up again in one year. This year I was not as anxious about it until I got closer to the date. It's funny how you do not have a choice in this matter but to follow through and hope that everything is O.K. The stress level diminishes somewhat. The Oncologist once again did not think that any of my symptoms affecting the right ear has anything to do with the tumor. My ENT did not think so either. I was diagnosed with TMJ and a dislocated jaw which is probably what is contributing to the discomfort that I sometimes experience. As far as my hearing, I am losing it but slowly, I have to schedule another hearing test.  It 's becoming more unconfortable in noisy places, I cannot hear someone speaking if there is background noise. I am wondering when it would be a good time to get a  hearing aid, as my work requires a lot of phone use and it becomes tiring using only one ear the whole day and if someone is talking around me while I am on the phone I lose track of the whole conversation. I haven't researched any options for hearing aids here in Toronto. I know they are expensive and not covered by most Insurance Companies. Anyway, hope I inspired some of you who may be thinking about GK. If you have any suggestions about hearing aids, I would love to hear them.

Vivian   

[mk]

Hi Vivian,

it is great to read your update, congratulations. You must be very relieved.

Sorry for the gradual hearing loss, I guess this is somewhat unavoidable. The choice of hearing aid will depend a lot on whether you have good word recognition or not. Conventional hearing aids work well if you have word recognition. The results from the hearing test will be needed to assess the situation. Your ENT will advise you accordingly.
I just wanted to mention that actually you can get some financial assistance from Ontario, if there is proof that the aid is needed. I got $500 for my Cros hearing aids. And I can get another $500 from my insurance. So that's quite a substantial amount. Once you get a referral to an audiologist, they will let you know about all this.

Marianna

[Jim Scott]

Hello again, Vivian ~

Thanks for sharing your encouraging two-year GK update.  I'm SSD but don't use any hearing aid devices so I cannot offer any advice on the subject.  However, I'm confident that many others, will.

Jim

[Vivian B.]

Thanks guys. I may be looking at a hearing aid soon. Need to start researching options.

Vivian

[leapyrtwins]

Vivian -

I'm SSD and have a BAHA.  I love it and think everyone should have one 

That said, if you're looking at conventional hearing aids, the Phonak Cros is supposed to be excellent.

Best,

Jan

[Tumbleweed]

Hi, Vivian:

Dr. Steven Chang (Stanford doc) recommends not getting a hearing aid until hearing has stabilized. That is, when your hearing hasn't gotten any worse over the previous 12 months, then it's time to get a hearing aid. Getting one before then, you'll be chasing a moving target (changing hearing response).

There are a lot of opinions about which conventional hearing aids are best, and it can be confusing. Much depends on the fit and your hearing response (which frequencies are affected and by how much). After researching hearing aids online for a few hours, I came to the conclusion that the best tack is to find a highly qualified "dispensing" audiologist (i.e., one who doesn't simply test patients but fits them with hearing aids). They are up on the latest technologies and will work with you to pair you with the best aid to meet your goals.

Best wishes,
TW

[mk]

I don't think that the CROS would qualify as conventional hearing aid. It does not amplify the sound, because it is targeted for people with SSD who would not benefit from this. The Cros receives the signal in the "bad" ear, and sends it wirelessly to the good one. So the principle is very different from conventional aids.

Vivian, I don't remember : do you have any hearing left, or are you SSD? Has your hearing stabilized? TW makes some very good points.

If you are SSD and it bothers you, then for sure it is a good idea to research your options. Keep in mind that if you have a demonstrated need Ontario contributes $500 towards a hearing aid.

Marianna