Author Topic: My Cyber Knife Adventure  (Read 11606 times)

gary.s

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Re: My Cyber Knife Adventure
« Reply #120 on: May 18, 2019, 10:27:14 pm »
Thanks Jessica,

It is a great relief to know that things are progressing as they should. In time, I am hopeful that my brain will adjust to my balance issues and dizziness. In the meantime, I am gonna keep pushing forward and dealing with the symptoms when they occur. Be well and thanks for your support and kindness.

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 #121 on: May 23, 2019, 02:25:39 am »
Hi Gary,

It's good news to see increased necrosis & the tinnitus gone - I'm glad you're keeping positive about the triggers that come ;hopefully they too will dissipate over time. It's a stress inducing diagnosis and treatment to deal with, i hope  the 12 month reprieve from attnding an MRI is a stress relief for you ( i was usre happy to hear that at my last consult :))

healthy healing 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 #122 on: May 23, 2019, 10:38:27 am »
Yes Stella, a 12 month reprieve is what I need now. Just enough time to relax and get some more healing done. This entire AN experience is anxiety inducing, although it seems like we are all able to work through it. Just have to be strong and keep it together. Nice hearing from you Stella, hope all is well with you also. 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 #123 on: July 15, 2019, 03:00:35 pm »
When I had a hearing test about a year ago, they found that as a result of my AN, my acoustic reflex was non-functional. The acoustic reflex is the ability of two inner ear muscles to contract, thus reducing incoming sound by at least 20 db. When the acoustic reflex is non-functional, noisy restaurants, parties, laughter, vacuum cleaners, and even the air conditioning systems are at times intolerably loud. I am not sure why the reflex does not work in both ears when my AN is in one ear. They must have some kind of connected circuitry in the brain. There are a lot of scientific articles written on AN's and their impact on the acoustic reflex, in addition to ongoing research. After reading several of these articles, I now have a better understanding of why the world around me sounds so darn loud. Just another condition caused by my AN.

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 #124 on: August 12, 2019, 03:02:29 pm »
It has been about 15 1/2 months post Cyber Knife radiation. All was well until the past week when my palate started hurting. It felt like electrical shocks were running through my face. I thought it was a tooth ache, strep throat, allergies, etc. I woke up Saturday night with pain in my nose, palate, lip and teeth in the upper jaw. The electrical pain was all on the right side, my AN side. Touching my nose lightly sends shock waves through my face. Very discouraging after feeling quite normal for months and months.

After speaking to my extensive team of doctors, both neurologists and ENT's, it has been determined that my trigeminal nerve is inflamed. This nerve has three branches with one of them going to the nose, lips, palate and teeth. When I explained my pain, it was easy for all of my doctors to determine the cause. My tumor could be swelling again which can happen at this point in time after CK, and therefore putting pressure on the trigeminal nerve. I have been referred by Dr. Porter at Barrow to a neurological specialist who deals with trigeminal nerve problems. I was told by Dr. Porter that there is no need for another MRI and that medication will take care of this new symptom. I am now waiting for the appointment to be scheduled with my new doctor. I will be sure to report the results of my doctor's visit.

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 #125 on: August 12, 2019, 07:56:32 pm »
Hi  Gary,

I was so happy to see you updated, and then disappointed for you that are now having trigeminal  nerve pain. What a drag - and how very, very uncomfortable the electrical shocks sound.

From diagnosis on, I’ve had some tingling and sensations, but not as you have described. However, I can empathize with how uncomfortable and disconcerting they are. Also, how the very sensations themselves cause a flare-up in AN anxiety. They always make be start to fret about what is going on in there.  But, your doctors seem to think it's par for the course - so that's a good thing.  It’s reassuring to know they see no need for another MRI and that the feelings can be taken care of with medication.

I know things are really unpleasant now, but they will get better! And you will feel more yourself soon.

Wishing you lots of healing,

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 #126 on: August 12, 2019, 10:30:33 pm »
Thanks Jessica,

This has set me back a few steps, feeling how unfair this entire trip has been. Nothing life threatening, just life changing. It is comforting that the doctors were not alarmed with my new problem, so I can now lower my anxiety level. Regardless, it is a bummer to have another symptom to add to my long list of AN issues. As usual, thanks for your support and good wishes 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 #127 on: August 13, 2019, 05:46:38 am »
Hi Gary,

It sounds very disconcerting to experience that type of electrical pain.  Let's hope this trigeminal flare up is short term. So far you have navigated this unfair and life changing trip with courage and care; I hope this new issue passes soon.

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 #128 on: August 13, 2019, 09:41:25 am »
Thanks for your kind words of encouragement Stella. I am confident that things will turn out okay. If this becomes another chronic symptom caused by the AN, then I will learn to manage it and cope.  I hope all is well with you and that life is good. Be well 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 #129 on: August 14, 2019, 07:38:01 am »
Hi Gary,
So sorry to hear that you are encountering this painful side effect. So many of us have benefited from your willingness to share your AN treatment experiences. The determination and positive attitude  you have shown when confronting each problem has been inspiring to me and I am sure to many others. I am sending prayers your way and hoping this new unpleasant problem is quickly eliminated with medication and the last setback you will encounter on your AN journey.

gary.s

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Re: My Cyber Knife Adventure
« Reply #130 on: August 14, 2019, 03:53:40 pm »
It is just another ride on the anxiety train. When everything is going okay, I guess a wake up call was inevitable. Thanks for your prayers and good wishes Mary Ann. I hope your AN journey is going well and that you are in good health. You have been part of my little journey from the beginning and I appreciate your friendship. I will be okay, just have to settle down and deal with another AN issue. 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 #131 on: September 03, 2019, 03:10:01 pm »
I have seen two doctors, and consulted with two other doctors and several neurological nurses over the telephone regarding the trigeminal nerve pain. My November 2018 MRI indicated that my AN tumor is pushing against the trigeminal nerve, therefore causing the pain I am experiencing. Hard to know why the pain is occurring now, but it is. Epilepsy medication is usually prescribed, which stops the neurons from randomly firing. As with all medication, side effects occur.

I have decided not to take any medication. I am going to wait it out with the hopes that as the tumor shrinks from radiation, the pain will cease. Now that I know this is not life threatening, I am much more relaxed and willing to deal with it. Just another day with acoustic neuroma issues.

gary.s
 
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

jami

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Re: My Cyber Knife Adventure
« Reply #132 on: September 07, 2019, 01:15:37 pm »
Gary.s -- you are a rock star! I wonder if now that you understand and are relaxing into it, it might even start to get better. I find the facial numbness / twitches / aches get worse when my stress level (ahem, work) grows.

Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment

gary.s

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Re: My Cyber Knife Adventure
« Reply #133 on: September 08, 2019, 06:28:43 pm »
Hi jami,

Thanks for compliment, although I think we are all AN rock stars. All of us are going through our own little battle and dealing with it the best we can. Stress does make any of the associated symptoms feel worse, and yes, I am feeling better than I did a few weeks ago. Not as anxious or freaked out about the trigeminal nerve pain I feel. Life is really okay, just have to keep being strong. Be well jami.

gary.s
« Last Edit: September 12, 2019, 08:03:37 am by gary.s »
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 #134 on: September 11, 2019, 06:06:11 pm »
Hi Gary!

I am glad to hear you're feeling better both physically and mentally - and you really are brave! I hope this episode subsides and and in due time you can look back and know all is well.

Keep being a rock star!

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

 


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