Author Topic: My Cyber Knife Adventure  (Read 13681 times)

gary.s

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Re: My Cyber Knife Adventure
« Reply #135 on: September 12, 2019, 06:27:07 pm »
Hi Jessica,

Yes, I am feeling much better, thank you. Instead of being a rock star, maybe it is more fitting to be just another AN warrior. Just gotta keep fighting and not giving up.

I found that vitamin B complex has helped tremendously. Especially B12, which is a key player in the function and development of brain and nerve cells. So I have been eating well, taking lots of vitamins and getting rest. As a result, I am feeling back to my AN normal with just a little residual pain left over from the trigeminal nerve shocks. I don't wish them on anyone. You are a rock star also Jessica.

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

SP

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Re: My Cyber Knife Adventure
« Reply #136 on: October 03, 2019, 07:43:21 pm »
Hi Gary,

I haven't been on here for a little while so just caught up on your progress...

I'm so glad you found an alternative to the meds that works for you :), that nerve pain firing is intense.

I developed shingles earlier this year and of all the nerves the virus resurrected itself via a cranial nerve on the right eye side (opposite to AN) of my face. Felt like intense electric pain firing through my brain - thankfully lasted only a short time - and is OK now.

It's great that your vitamin and stress management tools have brought that nerve back to calm for you ... your strength and resolve to keep managing the hard things is inspiring, be well.

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 #137 on: October 05, 2019, 06:10:32 pm »
Sorry to hear about your shingles Stella. The electrical shocks to the face are something else, especially when added into the rest of our issues. It just seems like it never ends, just another day in our lives. I am doing much better, thanks for your support. I just pray that the trigeminal nerve shocks do not re-appear.

I have known several people who had shingles, not a good thing. I am happy to hear that you are doing okay now. Fall weather is beginning here in the Arizona desert, waiting for the rattle snakes to go away so I can go hiking. All is really okay, knock on wood. Be well and stay healthy Stella.

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

Ionman

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Re: My Cyber Knife Adventure
« Reply #138 on: November 01, 2019, 10:52:51 am »
Greetings All,

I was wondering if those who had CK could post their treatment GY dosage values. I’m considering CK for a 2.5cm AN at Kaiser SSF for 3 days, 6 GY each, total 18 GY. Just hoping I could get some values to see if this is in line with others.

Thanks!

ppearl214

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Re: My Cyber Knife Adventure
« Reply #139 on: November 03, 2019, 05:40:45 pm »
Hi Ionman and welcome! My AN was 1 cm. I had CyberKnife in April 2006. 5 days, six Gy for total of 30 Gy. I had a lot of serviceable hearing. The goal was to save it. They did. The forums are a wealth of information. There are lots of us that have had CyberKnife done. Again, welcome to the forums.
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Crazycat

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Re: My Cyber Knife Adventure
« Reply #140 on: November 09, 2019, 11:30:39 pm »
Hi Phyl!Where have you been? How's Capt Deb? Have you heard from her?
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

notaclone13

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Re: My Cyber Knife Adventure
« Reply #141 on: November 10, 2019, 10:23:12 am »
Hi Phyl,

It’s nice to see you posting on the forum.  I have been following your story since I was first diagnosed and came across an inteview if you on YouTube regarding Cyberknife treatment of ANs. I think it fair to say you are a pioneer patient in this treatment  approach. Thank you for all the information, personal experience and positivity you have shared with AN patient’s through the years. Just the other day I was wondering how you were doing now many years after your treatment. I know I speak for many in thanking you for your wisdom, enthusiasm and willingness to share.

 


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