Author Topic: My Cyber Knife Adventure  (Read 19908 times)

gary.s

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Re: My Cyber Knife Adventure
« Reply #30 on: May 03, 2018, 03:07:33 pm »
Yesterday started out rough, headache, dizziness, and just not feeling right. By the afternoon, all was good again. These temporary surges of symptoms seem to leave as fast as they come. They are somewhat frightening, but it is important to wait them out and know that everything will be okay. And today things are okay, feeling full of energy and alert. Took a long walk and did not have any dizzy spells at all. So enjoying some of Arizona's final cool days before the desert heat returns. One day at a time, and today is a good day.

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 #31 on: May 03, 2018, 04:53:59 pm »
Hi Gary,
I notice even being in W&W,  I have good and bad days and can't figure out what causes the difference. Yesterday I woke up early feeling fantastic, minimal tinnitus, no dizziness.  I felt more normal than I have in some time.   Some days I can easily do a 30 minute walk with minimal dizziness.  But today was horrible, felt wonky headed and semi-dizzy. Also have that weird pressure feeling like my ear needs to pop.  It might be due to an stomach upset I had last night which resulted in some dehydration not enough sleep. This morning woke up to loud tinnitus and feeling unsteady. The bad days are really depressing and it is hard not to give up and just lay around all day feeling sorry for oneself. But, as you say one just has to push through it and tell yourself it is going to get better.

Good to hear that you are better today after having a not so good day yesterday. Your positive attitude is an inspiration.

M.A.

gary.s

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Re: My Cyber Knife Adventure
« Reply #32 on: May 03, 2018, 08:37:47 pm »
Sorry you are not feeling well Mary Ann. Regardless of where we are at, WW, surgery or radiation, at times it is difficult to cope with AN symptoms. I am fortunate to be retired, so when it hits me, I can just stay at home and rest. No real obligations or commitments, I have cleared my slate so I can deal with whatever is happening. I am not sure how I would handle working and healing from CK at the same time.

Try to get some rest and hopefully you will feel better tomorrow. I had a good day today, maybe yours will be tomorrow.

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 #33 on: May 06, 2018, 08:06:10 am »
Thanks For the kind words Gary. You are right, later in the day I did start feeling better.  One just has to ride it out. I too am retired. I had a few wonky headed days when I was still working, but was abled to get through the day. If dizzy, I took Dramamine which helped but made me drowsy. So I’d drink coffee to counteract it. Kind of a catch 22, but it worked. I didn’t know I had the AN before I retired, but looking back I had symptoms.

gary.s

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Re: My Cyber Knife Adventure
« Reply #34 on: May 06, 2018, 05:40:26 pm »
Hi Mary Ann,

I had a variety of symptoms for several years before being diagnosed with the AN. Headaches, vertigo, dizziness, blocked ear, and a loss of hearing that increased with time. I more or less ignored it until the hearing loss caused enough anxiety in me that I went to see an ENT. We just learn to cope with pain and discomfort, especially as we get older. I have become a believer in the one day at a time theme. I seem to have two to three good days and one bad day. So those are pretty good odds after two weeks of CK treatment. And the one bad day is not that bad, I just have to rest my body and brain.

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 #35 on: May 08, 2018, 01:53:55 pm »
I am eighteen days after CK and doing fine. Had a little dizziness the past several days, but it only lasts a few minutes at a time. Sleeping well, eating healthy, getting exercise, resting when needed, and enjoying life. Hopefully this continues and the symptoms remain manageable. All is okay today.

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 #36 on: May 08, 2018, 08:36:55 pm »
Hi Gary, great to hear that you are doing well. Just wondering, did you have any dizziness prior to Cyberknife, or is this something new? Even without treatment I get these temporary dizzy episodes when I exercise too much or race around the house doing various activities. When I sit down and rest, things improve in about 5 minutes. I always keep a chewable Dramamine nearby however, just in case things don’t resolve.

gary.s

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Re: My Cyber Knife Adventure
« Reply #37 on: May 08, 2018, 08:50:05 pm »
I have had dizziness and at times vertigo for several years now prior to CK. The vertigo used to be really bad, wipe me out for a day at a time. It has become very rare, so I pray that it does not return. I can handle the dizzy spells, just have to stop and rest. It does go away after a few minutes. Getting a dizzy spell is an old symptom, so no surprise to have it happen over the past few days. Maybe it will be gone tomorrow, we will see.

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 #38 on: May 11, 2018, 11:15:56 am »
Hi Gary!

That's great the vertigo seems to waning! I still have less face tingling than I did before CK, too. So maybe that's a thing! Maybe we won't have those any more. Fingers crossed! Hope you are 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

gary.s

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Re: My Cyber Knife Adventure
« Reply #39 on: May 13, 2018, 02:53:48 pm »
Some of the symptoms we experience are the result of the AN tumor pressing on the facial nerve. I have facial numbness, no taste on the AN side of my tongue, and my lower lip on the AN side feels like pins and needles at times. It is my understanding and hope that once the tumor begins to shrink, the pressure on the facial nerve will be reduced and these symptoms will mostly go away. Like Jessica says, "Fingers crossed."

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 #40 on: May 14, 2018, 11:39:40 am »
Hi Gary,
Nice to see your posts.  Since there may be some swelling post Cyberknife, it would not be unexpected to have continued pressure on the facial nerve and thus persistence or even a temporary increase in symptoms.   But as you noted, once tumor shrinkage begins, even if slight, there should be an improvement.  I think the pins and needles may be a good sign, because if the nerve was dead, you would have no feeling there at all. Hoping you see shrinkage and increase in feeling and taste very soon. 

gary.s

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Re: My Cyber Knife Adventure
« Reply #41 on: May 15, 2018, 05:36:16 pm »
Yesterday I had a post op office visit with my neurologist at Barrow Neurological Institute in Phoenix. It has been about 25 days since Cyber Knife, so Dr. Porter wanted to see how I was doing. I was given both cognitive and physical exams to see if anything has changed since CK. The cognitive exam tested my memory, concentration and attention. The physical exam tested my balance, muscle coordination, eye movement, and ability to feel sensations on the AN side of my face. The exam showed that I was stable, and nothing has changed since CK. Also, all of the various symptoms I am having are the same ones I had prior to CK. We did discuss the onset of tiredness, and apparently that is a common side effect of radiation. So far, so good.

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 #42 on: May 15, 2018, 07:52:39 pm »
Hi Gary,  I am happy to hear that your symptoms post Cyberknife are no worse than before. Hopefully your next MRI will show a “fried tumor” that is shrinking into oblivion.

Gtmochi

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Re: My Cyber Knife Adventure
« Reply #43 on: May 18, 2018, 07:27:11 pm »
Hi Gary! I am so, so glad to hear that you are well and that your appointment and exam at Barrows showed nothing had changed since CK. That's great and so reassuring! Like M.A., I hope that your next MRI shows that your AN is well on its way to never causing problems again.  Also, that is really great that you had a follow up exam with Barrows! What a great protocol.
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 #44 on: May 19, 2018, 08:00:30 am »
Thank you Gtmochi and notaclone 13 for all of your support over the past month. It has helped tremendously having people out there that are watching over me.

I am very fortunate to have my doctors so close to where I live. It makes things very convenient for follow up visits or any issues that may come up. Yesterday I took a one month post CK MRI because my radiologist wanted to establish a baseline study on my tumor. I will see him on Tuesday to discuss the results. This is part of his research project on AN and I am happy to participate if it can help others in the future. I will report back after my office visit next week. Curious to see if any changes have occurred to the tumor in one month.

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