Author Topic: My Cyber Knife Adventure  (Read 25208 times)

notaclone13

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Re: My Cyber Knife Adventure
« Reply #15 on: April 20, 2018, 05:21:20 pm »
Happy to hear that your tumor is officially toasted and now shrinking into oblivion. Thanks so much for including us on your journey and giving us day to day updates. We will be looking forward to hearing from you in the coming days and weeks and hope to hear that all is going well. I admire you for making the difficult decision to go forward with treatment. 

gary.s

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Re: My Cyber Knife Adventure
« Reply #16 on: April 22, 2018, 10:49:32 am »
Two days after my Cyber Knife treatment and I am doing pretty well. Headaches are taken care of with Advil, yesterday I just took two all day. Some throbbing at the AN site, but that only lasts a few seconds each time. Today I am a little disoriented, spaced out from time to time. Also a little dizzy, so it is a day when I am going to rest and hang out. Sleeping has been difficult, feeling tired but my thought patterns are too active to settle down. Hopefully my sleep will improve as the days go on. Just have to take advantage of the good days and rest on the mediocre days. Today is a rest day.

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, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

Gtmochi

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Re: My Cyber Knife Adventure
« Reply #17 on: April 22, 2018, 10:15:44 pm »
Hi Gary,

I am so glad that 2 days out you are doing well! After going though so much, it's hard to get the mind to quiet - but before long you'll be sleeping well. Wishing you continued good recovery and healing!
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

gary.s

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Re: My Cyber Knife Adventure
« Reply #18 on: April 24, 2018, 11:30:33 am »
Day four after CK and feeling pretty good. Woke up with a headache and the first cup of coffee seemed to take that away. Trying to eat a well balanced breakfast with both protein and carbs. I usually eat too many carbs, so trying to lessen that. When asked about vitamins, my radiologist told me that the most important ones are the antioxidants, A, C and E. So I have been taking these each day. Also walking in the morning to relax and clear my mind. My brain is very stimulated, lots of things going through my head from the distant past to the present. My Neurotology doctor called yesterday to see how I was doing, and said that the over stimulation is the result of CK and it happens to some people. It supposedly only lasts a few days. All in all, I am doing okay.

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, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

Gtmochi

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Re: My Cyber Knife Adventure
« Reply #19 on: April 24, 2018, 04:02:33 pm »
Hi Gary! I am glad things continue to head in an upward direction! Also, thank you for the anti-oxidant tip. I’ll have to make sure I’ve got all that covered! Also, that’s super interesting about the brain being stimulated by the CK. You should write all the thoughts that are coming and going into a journal —  a story might bloom  (says the writer  ;) ) Super happy to hear you are doing 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

gary.s

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Re: My Cyber Knife Adventure
« Reply #20 on: April 24, 2018, 05:48:34 pm »
Hi Gtmochi,

The brain stimulation is usually happening when I am resting and quiet. Almost like meditation, but my mind is active. It seems to be slowing down today, but yesterday my brain was a constant chatter box. My wife also told me to write things down, but it is difficult for me to remember what I am thinking. So I am just flowing with it and hopefully things will quiet down soon. Felt a little dizzy this afternoon for a couple of hours. Just had to lay down and rest again. I am being active when I am feeling good, but when that tiredness hits, it is time to rest. One day at a time.

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, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

notaclone13

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Re: My Cyber Knife Adventure
« Reply #21 on: April 24, 2018, 06:54:06 pm »
Hi Gary,
Glad to hear you are feeling mostly good.  Sorry about the dizziness. I think it is not unexpected and occurs until your brain learns to depend upon your functional balance nerve and to ignore the bad one.  I get these transient dizzy spells when I rush around or change head postitions alot, like when cleaning house. I thought it gave me a pretty good excuse for not cleaning the house, but my hubby isn't buying it. He just says I need to do things more slowly. Hope you continue to feel better everyday. We enjoy your updates so thanks for posting.

M.A.
 

gary.s

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Re: My Cyber Knife Adventure
« Reply #22 on: April 26, 2018, 02:38:49 pm »
Well I finally understand what a "wonky head" feels like after reading posts for the past year. Today I have one and it is not very pleasant. Kinda dizzy, unstable, and spaced out. No headaches or throbbing or pain anywhere, only a wonky feeling. I am just experiencing another day with my newly toasted AN. Hopefully it does not last for too long.

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, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

Gtmochi

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Re: My Cyber Knife Adventure
« Reply #23 on: April 26, 2018, 04:24:41 pm »
Hi Gary,

You are doing great! Being active when you can and resting when you are not - it's good to listen to yourself, and something I need to work on for sure. Every time I am unwell (not even due to the AN) I like to pretend nothing is wrong, and then forge ahead until I make things worse and crash.

Wonky head  - maybe I have that at the moment, too! I am not dizzy, but definitely spacey and weird. Like I am on a delay or something. But tomorrow will be better - I am sure it won't last long! This journey seems to have a lot of peaks and valleys.
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

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Re: My Cyber Knife Adventure
« Reply #24 on: April 26, 2018, 04:57:46 pm »
Gary, so sorry to hear about the "wonky head" head feeling.  Wondering if this might be due to swelling? As I recall your doctor did not give you steroids during treatment.    Might not be a bad idea to contact the doctor regarding your symptoms if they do not resolve in the next day or two.  Perhaps some steroids are needed.

gary.s

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Re: My Cyber Knife Adventure
« Reply #25 on: April 27, 2018, 05:38:01 pm »
One week after CK and feeling pretty normal today. Yesterdays wonkiness is gone and my head is clear. I have been very active and enjoying the beautiful warm weather we are having in the desert. Walking in the morning and in the late afternoon. Not feeling tired today, no headaches or dizziness. I think some of these issues are very transient, and they will come and go as the days go by. So each day will be different, and probably some of these symptoms will re-appear. One day at a time.

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, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

notaclone13

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Re: My Cyber Knife Adventure
« Reply #26 on: April 27, 2018, 05:55:36 pm »
Gary so glad to hear you are feeling better.  Fantastic news that the dizziness and wonky head is gone, glad it was transient. Hopefully from here on out you will feel better everyday and life will return to normal, except of course for those pesky little MRIs we must all submit to on a regular basis.  I have seen the Arizona desert in the spring time and it is absolutely beautiful.  Enjoy!!

gary.s

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Re: My Cyber Knife Adventure
« Reply #27 on: May 01, 2018, 12:35:40 pm »
It has been eleven days since CK and I feel pretty good. Just kinda normal actually, all symptoms have been my regular AN symptoms that have bothered me for years. The only thing that happens is when I get tired, I have to stop and rest. Sometimes I fall asleep for an hour, and other times I just close my eyes and relax. For exercise I have been walking several miles a day, and this has been helping with any balance issues I am feeling. Eating a healthy diet with lots of fruit, vegetables and fish. The support of family and friends has been extremely important for my mental well being. Today is another good day.

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, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

notaclone13

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Re: My Cyber Knife Adventure
« Reply #28 on: May 01, 2018, 02:32:53 pm »
Great news Gary.  I am so glad you are doing well.  Please keep posting because it is good to hear about postive post-Cyberknife experiences. Makes it less daunting for those of us considering this treatment route.

Gtmochi

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Re: My Cyber Knife Adventure
« Reply #29 on: May 01, 2018, 08:02:54 pm »
That's terrific, Gary! I am super happy to hear you are feeling good/normal! I'm a few days behind you, and I have to say that my experience has essentially mirrored yours :).  I've been trying to eat healthy, too! I think it helps. Now that I think of it, I've been craving fresh fruit like crazy. I usually eat fruit, but man - I can't get enough of it now! I guess the body knows what it needs  :).

Also, like you, I am so grateful for the support of friends and family. It really does shore you up and make you feel strong!
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

 


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