my 1 year since GK results

[madison]

hello everyone!
first i would like to thank all of you who responded to my posts and everyone else too because reading them all is very helpful too
i went to univ. of penn yesterday and my docs said the tumor shows necrosis and has swollen slightly. they said this is common at this stage of the game.i will have another mri in 6 months to see how it's doing. my hearing remains the same-50%  loss on the AN side. i have no idea how i got ANY of the words correct during the audiology test because i guessed every single one!
well, now i'm praying the tumor will shrink. the neurosurgeon said he saw a part inside the tumor that MAY show a start of collapse, but nothing definite. i am an xray tech and could not see what he was talking about even when he pointed it out to me, but then again, i don't do mri. i will be happy with what he said though and hope for the best. i am glad to be "free" for the summer at least and feel somewhat relieved.
thanks again and i will still be on the forum.i'm kind of addicted in a way because i feel like now i have all these people who really understand and i learn so much too.
talk soon!

[Sefra22]

Sounds like good news overall   Maybe the swelling can account for some of the symptoms you have been having lately?

Before my hearing got really bad, I would guess, too, and was surprised how well I did on the word recognition tests. Now, I still guess, but I am way off! It's even worse it real life situations. Funny sometimes.

This is a great forum, isn't it? It was from the information I read here that learned about and chose GK. It is also my main source of info for the BAHA. (if you want to read about my experience today, it is  in the "Hearing Issues" section.)

I am so happy to hear you are relieved and "free".

Hang in there,
Lisa

[Tumbleweed]

The word-recognition score is not as important as the speech threshold. You (and I) might have guessed the words correctly simply because the audiologist turned up the sound so loud in that particular headphone that you could hear the words better than in real life. My word-recognition score has stayed about the same, but my speech threshold has risen (i.e., the score has worsened) significantly over time. Dr. Chang (Stanford-based neurosurgeon) hipped me to the fact that it's the threshold that matters most.

Best wishes,
Tumbleweed

[mk]

Speech threshold is obviously important, but my ENT always makes sure to point out that if word-recognition remains good,  conventional hearing aids can be used even if the speech threshold deteriorates eventually. If word recognition is gone however, then all the hearing aid does is amplify the noise, so it is usesless.

Marianna

[EJTampa]

If word recognition is gone however, then all the hearing aid does is amplify the noise, so it is usesless.

Marianna

You're probably right about that, but being "just about SSD", I was thinking that if I could amplify the noise enough to get some directionality, that would be good enough for me.  I know my word recognition is zero, but would love to be able to tell where the voices, noises, whatever are coming from.
 
Ernie

[Jim Scott]

Madison ~

Thanks for the cheery update!  We always enjoy seeing good news.    Your hearing retention is also encouraging. 

AN swelling following radiation is relatively normal.  I underwent both surgery and FSR and even now, almost 3 years later, I'm sensing some indications of swelling on my 'AN side'.  No real problems, just a heightened sensitivity of my minor, longstanding symptoms (small numb spot on tongue, occasional dry eye) that suggest some residual tumor swelling, as my last MRI showed definite tumor necrosis.   We'll see what my next MRI (scheduled for later this year) tells me.  I fully expect to see more necrosis.  In your case, you have nothing to be concerned about.

Incidentally, Madison, if these forums are an addiction, many of us are 'hooked'.  That being the case, I don't want a cure. 

Jim

[ppearl214]

Incidentally, Madison, if these forums are an addiction, many of us are 'hooked'. 

speak for yourself... ok... me too.. .guilty!

Hey madison,

congrats to you! Always great to hear this kind of news.  it is always appreciated when folks such as yourself provide this post-treatment updates, so those newly diagnosed can read these things so they can add it to their research.  Congrats, congrats and continued wellness (and good news!) to you!

Phyl

[Tumbleweed]

Speech threshold is obviously important, but my ENT always makes sure to point out that if word-recognition remains good,  conventional hearing aids can be used even if the speech threshold deteriorates eventually. If word recognition is gone however, then all the hearing aid does is amplify the noise, so it is usesless.

Marianna

Good point, Marianna. Thanks for adding your knowledge to the discussion!

Best wishes,
TW