Author Topic: My Cyber Knife Adventure  (Read 13948 times)

ColleenS

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Re: My Cyber Knife Adventure
« Reply #90 on: November 08, 2018, 09:23:26 am »
Hello everyone! I have just read this thread and I am encouraged about how things will look months from now for me. I am just about a month out of having 5 sessions of SRS at Vandie. An odd thing that I have not expected is my balance is off. The reason I am surprised is that 15 months ago I had Translab surgery and lost my hearing and balance nerve on my AN side. So why the balance would be affected is odd to me. Thanks for all the great info in this thread.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

Sarah123

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Re: My Cyber Knife Adventure
« Reply #91 on: November 30, 2018, 01:25:34 pm »
I do not understamd, did you have surgery and how long after the tumor grew back and then you had cyberknife

gary.s

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Re: My Cyber Knife Adventure
« Reply #92 on: December 01, 2018, 07:22:14 am »
It has now been a little over 7 months since CK radiation. I took my MRI yesterday to see what is going on inside my head. The reason for a seven month MRI is because I took a MRI exactly one month after CK to establish some base line data. Anyways, although I was a nervous wreck, the results were very positive. The tumor is mostly black inside indicating necrosis is occurring. There is shrinkage in the tumor, from 2.07 cm x 1.70 cm in May 2018 to 1.83 cm x 1.62 cm yesterday. As a result of the shrinkage, the tumor has moved away from the brain stem allowing it to resume its original shape. The pressure and stretching on the facial nerve has also been reduced.

My various symptoms are becoming more mild and tolerable. Facial numbness is reduced, I am now able to taste some foods, very few headaches, and those noises in my head from tinnitus have become much more quiet and not as often. Dizziness is gone, but I am still having times when my balance is a problem. This usually occurs at night when I am tired.

All good news, I am very happy and wish the best for everyone.

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 #93 on: December 02, 2018, 04:22:29 am »
Wow Gary -- so happy for you that you got these excellent results from the latest MRI!
I am amazed to hear that the tumor has shrunk and enough to move away from the brain-stem and resulting in less facial numbness; how awesome is that... Thanks for sharing your great news and wishing you continued good health and happy times ahead.

take good care,
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 #94 on: December 03, 2018, 03:35:07 pm »
Thanks for the good wishes Stella. You have been hanging in there with me for quite some time and I appreciate it very much. I hope you are doing well also.

One of the things my radiologist said on Friday is that fish oil supplements reduce inflammation. I eat salmon at least twice a week and use fish oil supplements about three times a week. Along with other vitamins, this has been my routine for several years now. I have no idea if this has helped me or not, but it is useful information coming from a doctor. Of course eating well, getting lots of rest and exercise always helps the healing process. Happy Holidays 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

notaclone13

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Re: My Cyber Knife Adventure
« Reply #95 on: December 03, 2018, 06:23:24 pm »
Hi Gary,
Thanks for the update. So happy to hear that the dizziness had subsided and your AN is already shrinking. I know you went through a rather challenging period time after  CK, but you toughed it out with minimal complaining. This is fantastic news and hopefully the shrinking will continue and you can put this whole thing behind you except for that nerve racking annual MRI.  Hope you have a very Happy and Healthy Holiday.

SP

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Re: My Cyber Knife Adventure
« Reply #96 on: December 06, 2018, 03:28:41 am »
Of course, Gary --- I think we are best paced to understand each others roller coasters on this "unplanned for" tumor journey and support from you and others on this site has been very valuable to my peace of mind. As the weeks track along I am doing better most days.....Thanks for the tips on fish oil, salmon is on my menu multiple times a week :).

Good health and positive times ahead;

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 #97 on: December 06, 2018, 10:31:09 pm »
Hi notaclone13,

Thanks for being so supportive over this past year. Just wanted to let you know that I took your advice and started eating candied ginger each day when I felt dizzy, and it really helped. I am amazed how fast acting it has been when I had really bad days. Thank you.

I agree with you Stella, the support from folks on this forum has been comforting and very valuable to my peace of mind also. It is nice to have people around who really understand the symptoms, emotions and anxieties. Good health and Happy Holidays.

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 #98 on: December 06, 2018, 10:59:32 pm »
Hi Gary, so happy to hear the ginger is helping.  The clinical trials used ginger capsules, but I think those might be difficult on the stomach.  I keep crystallized sugar and Dramamine in my car at all times.

Gtmochi

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Re: My Cyber Knife Adventure
« Reply #99 on: December 09, 2018, 05:48:31 pm »
Hi Gary!

That is such fantastic news!!! I am so very happy for you! What terrific results - and how amazing that the tumor is shrinking as well as easing its pressure on your facial nerve and brainstem. It is all so wonderful - especially when your symptoms are easing up in the bargain, and your dizziness is gone. What a way to kick off the holidays!

Onward and upward!

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 #100 on: December 10, 2018, 12:01:23 pm »
Thank you Jessica. Yes, it is a great relief and I am happy to enter the New Year with a necrotic tumor. This year has been a long and difficult one, hopefully the next one will be good for all of us. Your ongoing support and sensitivity has been wonderful. Thanks

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 #101 on: January 18, 2019, 10:43:15 am »
I am at the nine month mark post Cyber Knife Radiosurgery. Time has gone by rapidly, although there were days that I thought would never end. Most of my symptoms such as tinnitus, facial numbness and dizziness have become only occasional reminders of my AN. I have had a couple of instances when my eyes crossed and remained that way for about 10 seconds. Totally freaked me out, although my eyes normalized pretty much instantly. Probably the biggest issue I am dealing with on a daily basis is being off balance. I am riding my bicycle everyday in an attempt to rectify my balance issues. This is helping, as long as I keep my head looking forward. I now wear my helmet just in case.

I know my tumor has caused some damage both physically and emotionally, and that I will never be as I was prior to the AN. Accepting this is probably one of the hardest things for me, but my life is good and things are really okay. Just gotta keep on keeping on.

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 #102 on: January 18, 2019, 09:19:05 pm »
Hi Gary!

I am very glad to hear that most of your symptoms have been only occasional... however, eyes crossing sounds extremely alarming! Isn't it amazing how, in the midst of this, even while freaking out about some wild new AN experience, we think to ourselves, "Well...I guess I'll wait it out." I am very (very!) happy to learn your eyes normalized almost instantly. Riding a bicycle to help with balance sounds like a great idea!
Accepting things (whether emotional or physical) are different now  -- isn't that the truth? That is probably my biggest challenge at the the moment, too.

It is so lovely to read your update and learn that you are, all in all, well. Onward and upward! Or at least onward ;-).

Jessica

« Last Edit: January 18, 2019, 09:21:12 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

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Re: My Cyber Knife Adventure
« Reply #103 on: January 19, 2019, 07:11:47 pm »
Hi Gary!

I hear you; the physical and emotional toll of this journey is very difficult. I appreciate your openness to state this truth here, I think that it helps to acknowledge the difficulties that exist for us and importantly.... what we can do about them. 
Great to hear you are bike riding for balance , I am a believer that the brain can eventually rewire and relearn around the damage. That freaky eye issue sounds pretty disturbing, let's hope it was a transient occurrence as part of the healing process.

wishing you 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 #104 on: January 19, 2019, 09:45:12 pm »
Thanks for hanging in there with me Jessica and Stella. Your support has been wonderful during these many months of healing from CK. Yes, the freaky eye stuff was freaky, but all is well. I did have an optometry appointment for eye glasses after that happened and my eyes checked out fine. Just another transient interaction of a tumor and a brain. 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