Author Topic: Thanks so much, as I'm about to start my journey.  (Read 6141 times)

jami

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Re: Thanks so much, as I'm about to start my journey.
« Reply #15 on: March 03, 2020, 07:32:54 pm »
Hi,

(StopAN1 - love the name. After my surgery my password was similar G3tThisAN! for a while)

I had CK, about 6 months after surgery. In the surgery they removed both the hearing and balance, so my story is a bit different.

BUT - i travel a LOT for work. A lot. This year I have been to Japan, Poland and India already.

The very first flight i took i had horrible headaches, and really struggled with resting. Its a bit better now, as long as i make sure I am rested and stress free. No new issues with balance (my new normal is that balance is a challenge, due to the surgery) when traveling. The tinnitus is super loud on the planes, and I use noise canceling headphones all the time.

Hope you both do well!
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

StopAN1

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Re: Thanks so much, as I'm about to start my journey.
« Reply #16 on: June 19, 2023, 05:08:09 pm »
It has been a 3.5 years since my GK treatment and 3 years since posting about it so I’m way overdue to give an update.

The 1 year, 2 year and 3 year post Gamma Knife surgery audiograms for my treated ear are identical, so no further hearing loss! There was concern I’d lose my usable hearing and essentially trend towards deaf, but that didn’t happen. Speech recognition has been very close to pre Gamma level from 52% to 48% at the 3 year point.

Had MRI’s at the 1 year and 3 year anniversaries with reviews by Dr Sisti. At one year the small tumor was approximately the same size as pre gamma, possibly slightly smaller, but not yet “dead”. At 3 years, same size, but per the shading of the tumor, judged to be dead, so quite relieved!

Overall, quite pleased with the results of the treatment. The objective was achieved to prevent the growth of the small tumor from pressing on my cochlear, which was just 1mm away, and thereby preventing further hearing loss. Except for some minor dizzy incidents 6 months post gamma, I haven’t had any since. With hearing aids (Phonak Audeo Paradise) I have decent hearing in what’s left (2K hz and above need 100 dB to hear w/o aid, so the corrected hearing about 70 dB). My hearing 1K and below preserved.

I was on a path to lose my hearing, have worsening balance issues and possibly require invasive surgery, so in my particular case, treatment via low dose GK was successful. Very thankful for the support and histories presented on this forum that gave me the confidence to treat my issue quickly - a few months after a serious balance issue and rapidly declining hearing loss. Dr Sisti was instrumental in his advice for the quick treatment vs another doc’s opinion to wait a year and retest. His team was fantastic in making the procedure as comfortable as possible.

Hope this update helps others who are going through their journeys!

donjehle

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Re: Thanks so much, as I'm about to start my journey.
« Reply #17 on: June 24, 2023, 12:43:09 pm »
Thank you, StopAN1, for your update.  It is very helpful.  Sometimes people post on the forums only when they have bad results.  And then readers think that CK (or whatever treatment method was used) is bad, and that no one should ever use it.  So, it's great to hear good news after three years, especially in regards to your hearing.

As you pointed out, everyone is different, and our approach to treatment needs to be different,  according to the factors which apply to us.  But your report should encourage us all that CK is a valid treatment method (as are others).

Best wishes on your continued journey and recovery!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.