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Author Topic: 6 month MRI after GK  (Read 12469 times)

SueLL

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Re: 6 month MRI after GK
« Reply #15 on: May 08, 2015, 08:45:40 am »
Best of luck with your recovery!  I was away from the forum for a few weeks and missed your other posts - sorry!  I found the recovery from GK to be minimal, but I am still stunned by having gone from 92% word recognition to 0% word recognition in just six months.  Of course I knew hearing loss was probable, but I traveled to UPMC as I felt my chances of hearing preservation were better.  No such luck!  I guess I would have chosen to enjoy more time with hearing before jumping in GK as long as the tumor was not endangering my brain.  It does no good to look back, but it is human nature.

Take care!!
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Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

Bonnie B.

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Re: 6 month MRI after GK
« Reply #16 on: May 10, 2015, 12:58:03 pm »
Hi Suell,  If you had waited for the GK procedure, your AN might have grown and you would have possibly lost the hearing in that ear anyway.  My AN was 1.7 cm and I had lost most of my hearing prior to have the GK treatment.  Compared to the side effects of surgery, GK is nothing.  I am so used to not hearing in my left ear and have learned to live quite well with it.
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1.7 cm AN
diagnosed January, 2012 - no hearing L ear
GK surgery done March 15, 2012 at Yale New Haven Hospital, New Haven, Ct.
Dr. Chiang and Dr. Yu

SueLL

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Re: 6 month MRI after GK
« Reply #17 on: May 20, 2015, 03:15:09 pm »
Agreed - I guess I am just having a bit of a pity party over my new normal.  Thank goodness for all the fellow ANers who are around for support!
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Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

PaulW

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Re: 6 month MRI after GK
« Reply #18 on: May 20, 2015, 05:15:57 pm »
Don't write off your hearing yet.
My hearing has gone from good to useless twice, after Cyberknife and it came back.
If you have some hearing it may return.. Hearing went within 24 hours, some came back after 10 days, and then improved slowly for 6 months. until the next bout of hearing loss.
Logged
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

SueLL

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Re: 6 month MRI after GK
« Reply #19 on: May 21, 2015, 08:03:46 am »
PaulW - Thank you for giving me hope!  Luckily I have a caring audiologist who is working hard to try and help me.  I have a hearing aid now, and while I have no word recognition in the AN ear, just hearing the sounds keeps my brain happy and I don't have that sense of fullness.  My first audiologist inferred that I need to just "deal with the permanent hearing loss" and move on.  The shock of losing useful hearing so rapidly about 5 months after GK and the demeanor of the first audiologist really hit me hard.  Thank you for the words of encouragement - they help!
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Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

Bonnie B.

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Re: 6 month MRI after GK
« Reply #20 on: May 26, 2015, 11:35:38 am »
Hi Suell, It is quite all right to have a pity party  now and then.  I try to focus on all the positive things but, once in a while, a negative thought appears.
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1.7 cm AN
diagnosed January, 2012 - no hearing L ear
GK surgery done March 15, 2012 at Yale New Haven Hospital, New Haven, Ct.
Dr. Chiang and Dr. Yu

SueLL

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  • Posts: 68
Re: 6 month MRI after GK
« Reply #21 on: May 26, 2015, 05:16:34 pm »
I know that so many people have been through so much more than I have, but I seem to be seeing more and more "wait and watch".  I think it is helpful for all the newly-diagnosed AN members to think this whole thing through.  It seems that all of the treatments have success stories and challenges.  In this society of quick fixes, I guess I just question whether I opted for treatment too soon.  I have guided friends and family through medical decisions all my life, but I don't think I sought enough help in my own situation.  I tell people not to look back, but I am guilty of doing so.

Thanks to all the AN cheerleaders!  I felt I could lean on you in my sad moments!   :)
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Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

ANGuy

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Re: 6 month MRI after GK
« Reply #22 on: May 26, 2015, 06:21:10 pm »
Quote from: SueLL on May 26, 2015, 05:16:34 pm
I know that so many people have been through so much more than I have, but I seem to be seeing more and more "wait and watch".  I think it is helpful for all the newly-diagnosed AN members to think this whole thing through.  It seems that all of the treatments have success stories and challenges.  In this society of quick fixes, I guess I just question whether I opted for treatment too soon.  I have guided friends and family through medical decisions all my life, but I don't think I sought enough help in my own situation.  I tell people not to look back, but I am guilty of doing so.

Thanks to all the AN cheerleaders!  I felt I could lean on you in my sad moments!   :)

Yes, you might have been better off waiting.  I am waiting, and I may find out some day I would have been better off acting sooner.  I am as sure about waiting now and you were about getting treatment.  Were you wrong, am I wrong?  There is no way to know.  All you can do is make the best educated guess you can at the time you make it.

One of the problems with our society these days is all of the second guessing.  It's why I am not a cop anymore.  In the old days, people understood that decisions are made with the knowledge available at that time.  These days, everybody comes along later and cheap-shots every decision.  It's why we can't get anything done anymore.  Do you think we could have put a man on the Moon 46 years ago with the current mind-set?  Everyone would be too worried about the second-guessing that would result if something didn't come out perfect.

You did the best you could with what you had, and, it might just have been the correct decisions anyway.
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Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

PaulW

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Re: 6 month MRI after GK
« Reply #23 on: May 28, 2015, 05:58:01 am »
Unfortunately hearing loss from an Acoustic Neuroma can happen at any time and the longer you have it the more likely that will be.

Recent studies are indicating that proactive Gamma Knife may have an advantage in hearing preservation over Watch and Wait

http://www.ncbi.nlm.nih.gov/pubmed/25077326





Logged
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!
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