Author Topic: CyberKnife Journey at Stanford  (Read 7881 times)

Gtmochi

  • Jr. Member
  • **
  • Posts: 87
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
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

Gtmochi

  • Jr. Member
  • **
  • Posts: 87
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
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

SP

  • Full Member
  • ***
  • Posts: 109
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

  • Jr. Member
  • **
  • Posts: 87
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
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

notaclone13

  • Full Member
  • ***
  • Posts: 242
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

  • New Member
  • *
  • Posts: 11
  • 205-243-1233
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
Diagnosed after sudden hearing loss at age 57
MRI November, 2018 1.7 cm
Steroids restored most hearing; ringing in ear, headaches, tingling on tongue, lips, fatigue, memory loss..
MRI in April, 2019 2.1 cm
Watch & Worry

gary.s

  • Full Member
  • ***
  • Posts: 131
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

  • Jr. Member
  • **
  • Posts: 87
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
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

Gtmochi

  • Jr. Member
  • **
  • Posts: 87
Re: CyberKnife Journey at Stanford
« Reply #83 on: April 29, 2019, 08:17:52 pm »
It’s hard to believe that a year has passed since I underwent CyberKnife at Stanford.  Back then, I was so scared and worried about all the symptoms I might encounter after treatment as well as my future outcome. I was fairly jumping out of my skin on the drive up to Stanford!

Now, all of a sudden, here I am on the other side.

I had my one year MRI, hearing test, and follow-up appointments  with Drs. Chang and Hancock at Stanford the end of last week.

MRI Results:

When I met with Dr. Chang and Dr. Hancock, they both said my AN shrank! Additionally, it still had a fair amount of necrosis - but less of it than in October.   

While meeting with Dr. Chang, he measured my October MRI versus my most recent. He said that in October, my AN measured approx. 27x27x29 and now in April it measures 25x23x25.  Word. 

When we went for my follow up in October, I was so relieved to learn the doctors were happy with my outcome thus far that I did not ask Dr. Chang to measure - he had told me no change in size, which was good enough for me!  Now I see his measurements differ from what the radiologist reports have stated.  I guess these things really do vary by the person doing the measuring! In any event, I am going to stick with Dr. Chang’s measurements, as he is the only constant - I don’t get the same radiologist every time.

Needless to say, I am so relieved and grateful. I realize there are years of check ups to go, but so far, so good :).


Hearing test: The tonal average (that little grid thing) has stayed the same. But my word recognition has gone down a little. I hadn’t even noticed! Nonetheless, I hope and pray my hearing keeps still.  Along those lines, about 2 weeks ago I got a hearing aid! It is an Oticon (thank you, insurance!!). It is very small and hardly noticeable. I am still in the adjustment stage, but it is already a help -- especially in noisy environments. 

Side note about the MRI:  Due to my being late (buying a dress! HA!) and the Ativan not ordered, I decided to grit out the MRI sans Ativan. I was successful in that I didn’t leap screaming from the machine. But oh boy did I want to. So - for anyone out there wondering if the Ativan really helps, yes, yes it does. I will never, ever do that again. Ever.


Symptoms:

In my case, I have been a part of the majority of post-CK patients about which Drs. Chang and Hancock told me, which are those do not have an increase in symptoms that require medication or assistance of any kind.

I have not required medication of any kind (other than occasional Advil/Tylenol). I did have some little blips - but nothing lasted long or was life-affecting. I have been able to remain as active as ever. I am grateful to have had a fairly uneventful post-CK experience, and wish everyone reading the same.


Follow up: Dr. Chang said he usually does every 6 months in the first year, and then once a year after that (and then at some interval the time between MRIs becomes longer but to be honest I don’t remember!). So my next MRI will be April 2020.  I have elected to do another hearing test in the fall with my audiologist here in LA - just to check on things, as there was a change in voice recognition.

I will 100% share my results April next year. Having this forum to rely on for information and support is invaluable.  Certainly I will continue to avail myself of everyone's information and experience, as well as offer my own. So if I can help in any way, please DM/post any time :).

Wishing everyone well,


Jessica
« Last Edit: April 29, 2019, 08:20:19 pm by Gtmochi »
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
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

notaclone13

  • Full Member
  • ***
  • Posts: 242
Re: CyberKnife Journey at Stanford
« Reply #84 on: April 30, 2019, 02:33:47 pm »
Hi Jessica,

Thanks for posting. All of us that have followed you on your Cyberknife journey are delighted at your good outcome. It is always uplifting to hear that the process can work well with a minimum of side-effects.  I hope you retain your hearing and continue to have smooth sailing from this point onward.

M.A.

SP

  • Full Member
  • ***
  • Posts: 109
Re: CyberKnife Journey at Stanford
« Reply #85 on: May 01, 2019, 05:47:32 am »
Hi Jessica,

Well done-- you got though this particularly stressful time of testing !!   Your news is so positive; it's so great that 12 months has passed and you get through your day without thinking about this AN -- shrinking away !! I'm glad that you're feeling so well and staying active ; it sounds like you have a positive self routine going. Welcome to the hearing aid club; it took me a few weeks to adjust, I hope you're benefits from having it continue.

take good care and wishing you ongoing positivity ;D,

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)

gary.s

  • Full Member
  • ***
  • Posts: 131
Re: CyberKnife Journey at Stanford
« Reply #86 on: May 01, 2019, 11:39:47 pm »
Wonderful news Gtmochi, I am really happy for you. You can go live your life and not worry about that pesky little tumor. Nothing much you can do about the hearing loss, hopefully it does not get worse as time goes on. Hearing aids are a wonderful device, they really help make things more normal for many of us. Be well Jessica and stay strong.

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

  • Jr. Member
  • **
  • Posts: 87
Re: CyberKnife Journey at Stanford
« Reply #87 on: May 02, 2019, 07:11:13 pm »
Thank you, SP, Gary, and Notaclone for your cheers, well wishes, and positive vibes. It really means a lot! I am very grateful for the support I found on this forum.

SP and Gary, thanks for your warm welcome to the hearing aid club. The adjustment really does take time - for some reason I expected it to be like putting on a new pair of glasses  8). But despite not running on all cylinders yet, it is really making a difference.  I was very much inspired by your wonderful posts - they gave me the reassurance I needed to stop being a big baby and just go and get one. 

SP, I may not have mentioned before, but your account of your own AN experience also gave me courage regarding CK. I am very grateful that you shared your journey here. When I was diagnosed and hysterical because I thought I would not have any choices, your posts gave me hope and encouraged me to consult a variety of doctors. So thank you very, very much for that.

Wishing you all the very best health and sunny spring days (well, autumn for you, SP  ;D)!

Jessica




« Last Edit: May 02, 2019, 07:16:02 pm by Gtmochi »
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
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

SP

  • Full Member
  • ***
  • Posts: 109
Re: CyberKnife Journey at Stanford
« Reply #88 on: May 03, 2019, 11:07:03 pm »
Hi Jessica,

Thank you for such your heartfelt message. I am more than glad that the story of my (also highly stressful) journey was helpful in any way. You have great resilience and one step at a time is the only way right? :).

 I also thought i would put the hearing aid on and off i go -- but it was not that way -- I needed around 4 weekly adjustments to get it close to right --- it's worth the improvement to social situations and most people don't even notice its there.

take good care in sunny LA (still sunny but getting colder in Syd),

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)