Author Topic: My Cyber Knife Adventure  (Read 14161 times)

gary.s

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Re: My Cyber Knife Adventure
« Reply #75 on: August 22, 2018, 03:04:46 pm »
Four months have gone by after my five sessions of Cyber Knife radiation. No new symptoms, just more of the same old ones reminding me that they have not gone away. My tinnitus has become very active over the past two weeks. All kinds of different noises happening on the inside of my head. I hear the sound of breaking glass, ringing, buzzing, hissing and clanking. When I am busy, those sounds are easy to ignore. When sitting quietly, my head is like a chatter box. So I try to stay busy.

Yesterday I saw my audiologist and had a trial of the Phonak CROS  B hearing aids for my single sided deafness. A microphone type hearing aid was put in my AN ear, and a regular hearing aid was put in my good ear. The CROS B wirelessly transfers the sound from the AN ear to the hearing aid on the good ear. This allows you to hear sounds on the side of your non-hearing ear. It was wonderful to be able to hear and understand words again. We are so lucky to live in a time when such technology exists. I will be purchasing a set next week.

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 #76 on: August 22, 2018, 03:27:10 pm »
Hi Gary!

Same old, same old -- that's great!! I mean. The gamut of sounds  not so much. Hopefully it will settle down. That's great that if you stay busy it's easy to ignore. I find that's the same with my tinnitus, which is pretty much the same sound in varying degrees of intensity. I too have noticed a bump in fluctuations - and a couple times last week I got a loud BEEEEP once or twice which was worrying - I didn't want it to stay! So maybe wack-a-doo tinnitus is a thing 4 months in after CK and will pass. Fingers crossed!

The Phonak CROS B sounds lovely. We are super lucky to have access to such great technology! What a relief to receive sounds from the non-hearing ear side.  Congrats on on your new hearing aids and on improved hearing because of them.

Continued happy trails!

Jessica
« Last Edit: August 22, 2018, 03:29:10 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 #77 on: August 22, 2018, 06:58:27 pm »
Hi Gary,

So glad to hear that the hearing aid tech is a positive addition for you!
the background ringing tinnitus is usually always there for me but not that noticeable during the day...Yes the strange tinnitus sounds are challenging to deal with, for me especially at night when its so quiet, the good thing is that the strangest ones usually pass in time...

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)

notaclone13

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Re: My Cyber Knife Adventure
« Reply #78 on: August 23, 2018, 07:05:11 am »
Hi Gary, so good to hear you are doing well and have found a hearing aid that helps. Sorry to hear about the worsening tinnitus.  Hopefully just a passing phase that will diminish with time.

gary.s

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Re: My Cyber Knife Adventure
« Reply #79 on: September 20, 2018, 08:45:36 pm »
I am at the five month mark post Cyber Knife radiosurgery. It is quite an adventure, although I would rather be taking a cruise or flying to Paris. My symptoms are not really getting any worse, they are just lingering. Prior to CK my symptoms were mild and did not occur each and every day. At five months, symptoms are present on a daily basis. Tinnitus, facial numbness, lack of taste on the AN side of my tongue, and of course fullness in the AN ear.

The good news is that I purchased a Phonak Audeo B hearing aid for my good ear and a Phonak Cros B which transmits sound wirelessly from the bad ear to the good ear. They are wonderful. I can now hear sound on both sides of my head, although I still cannot locate where sound is coming from. What a difference when having a conversation with a group of people, I can now hear. We are all very lucky to live at a time when these types of devices exist. It is making a significant difference in my social interactions with friends and family. Expensive, but worth it.

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 #80 on: September 21, 2018, 07:28:59 pm »
Hi Gary,
Thanks for the update.  I have been wondering how things are going for you.  I am sorry that you are having symptoms daily now, but is likely due to the tumor swelling and dying from the radiation. I hate the ear fullness thing, it is so annoying.  Have you gotten any relief from the mini-dizzy spells you were having?  I know the next few months are likely to be tough, but if the end result is a shrinking tumor, it will all be worth while.  i am very happy to hear the hearing aide is working out for you. It is encouraging to know that something helps with SSD as we are all likely to encounter this problem in the future.  Take good care of yourself and stay in touch.

M.A.

gary.s

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Re: My Cyber Knife Adventure
« Reply #81 on: September 22, 2018, 05:43:08 pm »
Hi notaclone13,

The dizzy spells are less frequent now, maybe a couple a week. I thought I was getting a little bit of vertigo, but that seems to have cleared up. I do find that tiredness creeps in during the afternoon and I usually pass out for an hour on the couch. I am hoping it is just the summer heat causing me to be tired since I spend a lot of time outdoors. All is okay, just dealing with the daily issues and pushing forward.

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 #82 on: September 26, 2018, 03:50:57 pm »
Hi Gary!

I would rather be going on a cruise of to Paris, too  ;D! Seems like we're on the same symptom train - nothing new. Although prior to CK my symptoms were every day - and they are still that way. I hope yours settle down and things return to a pre-CK level or less. Especially now that we are almost halfway there!

It is so heartening to read about how much a difference the Phonak Cross hearing aids have made for you! Congratulations! We are indeed lucky to live in a time when stuff like that is available, and I am sure I will end up availing myself of a hearing device - and am just so glad to know that they work great!

Wishing you continued good health!

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 #83 on: October 23, 2018, 02:54:15 pm »
I am at the six month time zone after CK and feeling okay. Same symptoms going on as month four and five. The most noticeable change is my balance is off kilter again. This is a symptom that goes away for a month or so then shows up again. I have some dizziness issues also, probably associated with being off balance. These are relatively mild symptoms that occur daily. I probably should not put on my roller blades and cruise around the neighborhood.

I am scheduled to take a MRI during the third week of November to see how things are going. Since I took a MRI one month after CK, I am now taking one at month seven. I will see how things are going with my AN. I know there has been a lot of discussion about contrast and the MRI recently. I will comply with my doctor's wishes and have the contrast, but I will also question the use of contrast for future MRI's when I speak to my doctors. All is 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

rupert

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Re: My Cyber Knife Adventure
« Reply #84 on: October 23, 2018, 09:01:23 pm »
I had similar symptoms as you.  Unsteady balance walking and dizziness at times. It would last a week or more sometimes and usually happened monthly.  I climbed poles  for a living as a lineman so I was certainly concerned about the balance issues.  Oddly,  I never had a problem climbing just the unsteady walking.  The best thing that helped me was just plain walking.  A lot, lot,lot of walking both on flat and uneven ground,  kind of a homebrew vestibular therapy.  It seemed the more I walked the better my balance was balanced. LOL.  Just great therapy.  Years later now my balance has improved to the point I don't even think about balance anymore and the dizzy nauseated feeling have gone away.  Don't put yourself in harms way but,  I'd keep the rollerblades ready for action!  Pushing the vestibular system a little farther once in a while might just help more than you realize.

gary.s

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Re: My Cyber Knife Adventure
« Reply #85 on: October 25, 2018, 05:42:42 pm »
I have been walking a tremendous amount lately, and I agree with you rupert, it does help. I try to walk on the edge of the curb, forcing myself to stay balanced. If I am not too tired, it works pretty well. If I am tired, I keep falling off the edge. Riding my bike at times is also a challenge, but I am forcing myself to do it and I find that things are improving. When I ride horses my balance seems to be perfect. It could be that I am not noticing being off balance because of the rhythm of the horse. Hard to tell. It just seems that we have to keep pushing ourselves to make our brains compensate for whatever negative impact the tumor has on us.

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 #86 on: October 26, 2018, 12:37:19 am »
Hi Gary ---such great news on the hearing aid success! I have started exercising more (weights and row machine and walking outside) while I'm waiting for my next MRI and for sure have noticed a difference, overall feeling better and less "wonky head" symptoms. Seems like pushing ourselves forward is a positive thing -who knew  ;)

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)

Gtmochi

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Re: My Cyber Knife Adventure
« Reply #87 on: October 26, 2018, 07:49:45 am »
Hi Gary!
If you do break out the rollerblades, just be sure to encase yourself in bubble wrap.

What a drag that you are having some dizziness again. But from the sound of it, you are walking tons. Riding always works wonders - I too never feel odd when on a horse. We are lucky to have horses!

Keep riding and be 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

notaclone13

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Re: My Cyber Knife Adventure
« Reply #88 on: October 26, 2018, 05:42:13 pm »
Hi Gary,
Thanks for the update.   Sorry you are are plagued with the dizziness.  It is a miserable feeling and because one doesn't know when it will occur, it is disruptive to carrying out normal activities.  I recently read and posted the link to an old article in the Washington Post about the effectiveness of ginger in preventing vertigo. It was proven to work better than Dramamine in some cases, without the drowsiness. Maybe taking a little ginger would help to ward off the daily dizzies. Hopefully this is just a temporary bump in the road, perhaps triggered by the dying tumor and swelling that occurs after successful treatment. I am betting that next month's MRI will show a darkening tumor that will soon be shrinking.

gary.s

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Re: My Cyber Knife Adventure
« Reply #89 on: October 27, 2018, 12:52:41 pm »
Thanks everyone for your ongoing concern and suggestions on how to deal with my various symptoms. I think the best medicine is lots of rest with a good nights sleep, eating healthy foods the majority of the time and lots of exercise. The freak outs really do damage both physically and mentally, so staying calm, centered and mellow has become my goal. If it is yoga, meditation, prayer, or horseback riding, getting in that quiet mellow zone is a great place to be. I am working hard to achieve these goals, although at times the AN anxiety creeps in. Be well everyone and Happy Halloween.

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

 


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