Author Topic: CyberKnife Journey at Stanford  (Read 6758 times)

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #75 on: January 29, 2019, 12:20:45 am »
Hi Stella and Gary!

I am so impressed that you guys made it through my crazy long post  ;D.

You are right about writing things out being cathartic, Stella. I hadn't realized I had so much to say when I set out to write that post - but out it came. Staying optimistic is not always easy - but on the less great days, knowing I am not the only one going through all of this is such a comfort. Thank you for always sharing your journey!

 Gary, our symptoms definitely run parallel to each other, we are AN wingmen!  You are right — dealing with things as they come and then letting them pass is exactly what we have to do. I have to work harder to remember that.


I am so glad I found this forum and made the connections I have! It has been such a huge help to have support from my AN friends :).

Wishing you both well!

Jessica
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock, 2.3 x 2.6 x 2.6 at time of treatment, but stable
6 month MRI: 2.5 x 2.5 x 2.6 (no change), central necrosis
6 month hearing test: 88% word recognition

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #76 on: March 19, 2019, 03:08:39 pm »
It’s now just about 11 months post CK for me, and so far, so good!

Tinnitus, hearing loss, and face feelings are all pretty much the same. I still remain very lucky to not have any problems with balance or vertigo.  Once or twice I’ve gotten a slight headache - but I can’t say for sure that the AN is to blame. It could be anything: allergies, stress, being tired, not drinking enough water, how dry it has been here in LA...in any event, the slight headache has away with some Tylenol/Advil, so I can’t complain.

The other day I finally went and saw a doctor about a hearing aid, and am really looking forward to trying one out. Not only because it will help with hearing, but while there I discovered that in some cases, the hearing aid can help make the tinnitus go away as it fills the space where the brain misses sound. My tinnitus is not that loud, but still, having it diminish would be a welcome relief.

It’s hard to believe that almost a year has passed since CyberKnife at Stanford, and that my 12 month MRI is just around the corner. I am both eager and anxious to know what is happening in my noggin. However, thus far I am feeling very well, staying active, and largely live my day to day life without really thinking about my AN.

After my MRI and doctor visits at Stanford at the end of April I’ll post an update.

Good health to all!

Jessica
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock, 2.3 x 2.6 x 2.6 at time of treatment, but stable
6 month MRI: 2.5 x 2.5 x 2.6 (no change), central necrosis
6 month hearing test: 88% word recognition

SP

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Re: CyberKnife Journey at Stanford
« Reply #77 on: March 20, 2019, 02:04:58 am »
Good luck Jessica!!!! So glad to hear you are feeling well; it's the best feeling to just live life and not think about the AN that's hitching a ride...

thinking the best for you,

Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #78 on: March 20, 2019, 09:55:55 am »
Thank you, Stella!! It really IS the best feeling to move forward with little to no thought (mostly - sometimes it gets the better of me!) of my interloper.  We give so much bandwidth to these suckers and they take their toll elsewhere. It's nice to just be. Anyway, here's to hoping that this season of relative content continues for both of us :).

Warmly,

Jessica
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock, 2.3 x 2.6 x 2.6 at time of treatment, but stable
6 month MRI: 2.5 x 2.5 x 2.6 (no change), central necrosis
6 month hearing test: 88% word recognition

notaclone13

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Re: CyberKnife Journey at Stanford
« Reply #79 on: March 20, 2019, 12:17:16 pm »
Hi Jessica,

It's so good to hear you are doing well at 11 months post-CK.  Thank you for continuing to post because it is always uplifting to hear that life can be somewhat normal after radiation treatment. It gives those of us still in W&W hope that should we need treatment in the future, there can be a good outcome. Hoping to hear that your 1 year MRI shows the best possible outcome.

AlabamaDonna

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Re: CyberKnife Journey at Stanford
« Reply #80 on: March 20, 2019, 01:48:12 pm »
Thanks for sharing your journey with us. Now, nearly a year down the road, are you still feeling great? I hear you can get headaches. Also, how's your hearing on the AN side?
Blessings,
Donna

gary.s

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Re: CyberKnife Journey at Stanford
« Reply #81 on: March 20, 2019, 05:35:57 pm »
Eleven months and counting Jessica. The time has totally cruised by so fast, it is amazing. The early months after CK are definitely hard because you just don't know what is gonna happen. But all is well and life goes on. Be well and best of luck on your next MRI.

Gary
 
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018 at Barrow Neurological Institute, Phoenix, AZ
9/2018 hearing aid Phonak Audeo B and Phonak Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #82 on: March 20, 2019, 08:23:37 pm »
Hi Notaclone!

Yes! Life post CK can be totally normal! Thus far I have been so fortunate in that respect. I actually have felt a bit guilty at times about that.

When I was diagnosed, reading outcomes was so important to me - both the smooth and challenging. I promised myself that come what may (and especially if things went well), I’d update so that some other newly diagnosed or W&W person would have another first-hand account. Thank you so much for being so supportive!



Hi Alabamadonna!

Yes! Thus far I am doing great.   I have not missed a day of work or doing any of the things I love (like riding horses)  due to the AN.

Previous to CK, I rarely got headaches - maybe 1-3 times a year, and they were always so minor I didn't reach for the Advil. During the first couple weeks post-CK I had some weird pressure-y feelings (like when you gently squeeze an orange) that went away with Tylenol or Advil. After that, headaches did not present for me. But you are right - headaches can be caused by the AN for sure! I just am not sure about mine - one I had the day after having 2 glasses of Sangria  >:D and a night at a noisy restaurant (so maybe the noise and me concentrating to hear conversation is the cause?) , and the other after a particularly dry, windy day spent outside.

Hearing seems to be the same. When tested last, I had 88% word recognition. I get tested at Stanford next month, but things seem about the same. At least, I don't find myself  saying "what?" more often  ;D.



Hi Gary!

YES! 11 months about c-o-u-n-t-i-n-g. They have really blown by! You are right - for most of us post CK, the first few months we are biting our nails, worrying about every sensation. But life stops for no one, so we are left with no choice but to stop fixating and jump right back into the fray, come what may. Then boom! 12 month MRI arrives.  Best of luck with your MRI , too! I am looking forward to hearing good news :).




Wishing you all good health :)

Jessica
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock, 2.3 x 2.6 x 2.6 at time of treatment, but stable
6 month MRI: 2.5 x 2.5 x 2.6 (no change), central necrosis
6 month hearing test: 88% word recognition