Author Topic: My Cyber Knife Adventure  (Read 10278 times)

notaclone13

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Re: My Cyber Knife Adventure
« Reply #105 on: January 20, 2019, 11:39:56 am »
Hi Gary, glad to hear you are doing well but that cross-eye thing is really freaky. I can imagine how scary that was.  Did you ask any of your doctors about it? Hopefully the worst is over now and from here on things will get better. Thanks for posting as we all learn from others experiences.

gary.s

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Re: My Cyber Knife Adventure
« Reply #106 on: January 20, 2019, 11:10:51 pm »
No, I did not ask any of my doctors about the eye issue. If it continued to be a problem, I would have contacted my neurologist. So many of our AN symptoms are very transient, so just waiting them out is what I have learned to do. I am essentially ignoring most of my symptoms so that I can just go on with my life. Things are actually really good notaclone13, just some blips once in a while. Hope you are doing well also.

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 #107 on: January 24, 2019, 08:51:28 pm »
You got it, Gary! We're all in this together :). Glad to know that all was well from the optometry appointment. You are right! Eye crossing is just another transitory thing. Wishing you continued healing and happy riding!!
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 #108 on: February 22, 2019, 06:15:32 pm »
Ten months have gone by since I had Cyber Knife and life is good. Symptoms are very similar to my nine month report, although I have had two vertigo episodes since then. I found that walking backwards initiated the vertigo, so that is something I need to be careful of. Dizziness has been less, although when walking I am still off kilter. The AN symptoms seem to increase when I am tired and not eating well. So I am trying to get rest, exercise, eat a well balanced diet, and relax.

Most of the time I completely forget about my AN, CK, SSD and all the symptoms associated with my tumor. So life goes on and everything is okay, living my new normal. It is nice to have time between MRI's where you can just forget about the AN and experience some peace of mind. Be well.

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 #109 on: February 25, 2019, 01:49:08 pm »
Hi Gary,
It is so good to hear that 10 months post CK you are doing well and life is resuming in the new "semi-normal" state. Just wondering, you mentioned that walking backward brought on 2 vertigo attacks.  How long did each attack last?  Was it just a minute or two or longer?  I notice that when I walk for a prolonged period of time, I start feeling dizzy. In only one instance did the dizziness evolve into something like vertigo. When I felt the dizziness evolving toward vertigo I took a dramamine and things improved in about 10 minutes. Still, it was rather scary because I was not at home and knew I could not drive until the dizziness resolved. By the way, how would you describe dizziness versus vertigo?

gary.s

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Re: My Cyber Knife Adventure
« Reply #110 on: February 25, 2019, 02:55:52 pm »
Hi Mary Ann,

Good questions regarding vertigo. One of the attacks was very mild, lasted a couple of minutes and then went away. I had a headache afterwards that tylenol quieted down. The second vertigo episode was much more serious. The room was spinning, I was nauseated, and I had to sit on the floor immediately. Luckily I was at home so I could just wait it out. It took several house before I could walk around and resume my daily routine. That one required advil and time.

I find the differences between dizziness and vertigo are quite significant. When I get dizzy, I am just light headed and not feeling very stable. Very similar to flying in an airplane and experiencing motion sickness. If I stare at something without moving my eyes, it usually goes away.

With vertigo, the room is spinning and even if I close my eyes, things are still spinning. There is no way to stop it until it stops itself. I am usually very weak afterwards and it takes hours for me to get back to normal. I used to have lots of vertigo issues when I started having AN symptoms several years ago, now they are very rare. Grateful for the rarity. Hope that answers some of your question notaclone13.

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 #111 on: February 26, 2019, 10:00:51 am »
Gary, that second longer attack must have been pretty scary. I have had attacks like that in the past and they terrify me. You get to wondering if the spinning will ever stop. I hope you never have another.

SP

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Re: My Cyber Knife Adventure
« Reply #112 on: February 27, 2019, 02:13:37 pm »
Hi Gary,

I am glad that you are doing Ok and that it sounds like you have some ideas for managing that vertigo - "rest, exercise, eat a well balanced diet, and relax" ; is an excellent protocol :). I'm glad its a rarity now and i hope it completely resolves itself for you.
I too have been between MRI's and yes i agree it's so nice to just have some peace of mind  for a while...

positive & healthful thoughts

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

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Re: My Cyber Knife Adventure
« Reply #113 on: February 27, 2019, 11:33:57 pm »
I am doing okay Stella, and I hope things are okay for you also. Staying as healthy as possible does have a positive impact on acoustic neuroma symptoms, and that is what I am trying to do. Life is good in the Arizona desert, cool weather, lots of rain, and coyotes everywhere. Be well.

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 #114 on: February 28, 2019, 10:54:05 am »
Hi Gary,

It is so lovely to learn you are doing well! Your plan for managing symptoms is super - rest, exercise and eating well make such a difference.  What a relief that dizziness and vertigo are on the downhill. Except of course, for walking backwards - I hope that all symptoms of that nature peter out soon!

Since we had treatment around the same time, we are on the same MRI schedule - it IS so nice to have some down time in between check ups!

Stay well and enjoy spring!

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 #115 on: March 01, 2019, 11:04:20 pm »
Thanks for checking in Jessica. Yes, we are both at the ten month mark post Cyber Knife. I am getting to the place where I am accepting my illness and just dealing with it the best I can. It is nice to be on the other side of radiation, with the hopes that each MRI in the future brings good results. I guess the anxiety will always be there, just somewhat tempered as time goes on. I just have to remind myself that acoustic neuromas are not life ending, they are just life changing. Be well.

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

gary.s

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Re: My Cyber Knife Adventure
« Reply #116 on: May 17, 2019, 11:12:29 pm »
Yesterday I had my 13 month MRI post Cyber Knife radiation. My tumor has essentially remained the same size as it was 6 months ago, but the necrosis has increased. The tumor is actually collapsing in on itself, indicating a greater amount of necrosis as compared to my last MRI. The radiologist was very pleased with the results and he told me to come back in one year for my next MRI. My anxiety level was so elevated at the doctor's office, it has taken over 24 hours for me to grasp how wonderful the news is.

My symptoms have not changed as the tumor is going into its necrotic state. My last hearing test about three weeks ago indicated that I have zero word recognition in my AN ear. My face remains mildly numb from my AN ear down to the corner of my mouth. I have almost no taste on the AN side of my tongue which is a real bummer because I really enjoy eating exotic foods. I seem off kilter at times when walking and hiking, and I do get dizzy if I turn my head too fast. I have tried to identify what triggers the balance and dizziness so I can avoid those situations. I have had some success, but it does not always work. None of these symptoms have gotten any worse after radiation, they just remain the same, except for tinnitus which is now totally gone.

Life is good and I am very pleased with the results of my MRI yesterday. It is what I was hoping for. Peace

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 #117 on: May 18, 2019, 09:44:55 am »
Great news Gary, thanks for letting us share your Cyberknife journey. The necrosis is a very good sign. Hoping to hear very soon that your brain has adjusted to the new normal and the vertigo is a thing of the past.

gary.s

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Re: My Cyber Knife Adventure
« Reply #118 on: May 18, 2019, 09:56:07 am »
Thanks for your ongoing support Mary Ann. I hope that my experience and the experience of others provides you with confidence that we can whip this thing and continue living our productive lives. Be well.

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 #119 on: May 18, 2019, 03:04:28 pm »
What wonderful news your MRI brought, Gary! Also, it is terrific yoru tinnitus has dissipated. Hopefully now you can unwind and relax a bit.  Also, like Notaclone13, I very much hope that before long your brain adjusts and dizziness/vertigo is behind you.

Happy trails!

Jessica
« Last Edit: May 18, 2019, 03:07:55 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