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Author Topic: 3 Months Post CK  (Read 5107 times)

sunny

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3 Months Post CK
« on: September 16, 2015, 02:33:42 pm »
Hi All,

I had told myself at the beginning of this journey that I would continue to post after having my treatment...be it good news OR bad news, in an effort to provide just one more person's accounting for anyone else considering CK. It's the least I can do to pay it forward for all the other experiences I have read about here.

Luckily, I'm able to say: "So far, so good." For the most part, my life is unchanged since my treatment -- I feel good, I'm still working part time, still exercising, and still happy with my decision. I am consciously taking care of myself:  trying to make (mostly) good food choices, getting as much sleep as I can, and doing things I love to do with people I love to be with. My baseline symptoms (some hearing loss and tinnitus) have not changed for the worse since being treated.

If pressed for any negative experiences lately, I would say that I've had the rare sharp pain behind my ear, but not really lasting long enough to call a "headache" or reach for the Advil. On days that I have had a lot of physical exertion (gym, garden, etc), I think I feel a little more tired than I used to, and so I take it easy for the rest of the day. And of course, I now think much more about mortality and aging, but that was bound to happen sometime. :-)

All the positivity aside, I know it's still early in my recovery. I've read enough accounts here to know that the (potential) swelling of my tumor is right around the corner. It's like "waiting for the other shoe to drop." I'll post again at 6 months and describe anything that's changed, for anyone that's curious. Until, then, I wish each of you all the best with making your choices, completing any treatment you may have chosen, and your future with or without your AN.

Take care,

sunny
Logged
Right side A.N.  (11 x 9 x 5)
Symptoms -- 2/18/15 sudden partial hearing loss and constant tinnitus
Diagnosed -- 4/24/15 by my ENT with MRI
Treatment -- 6/17/15 first of three CK treatments @ Stanford with Drs. Chang and Hancock
Treatment Completed! -- 6/19/19

GaryWNT

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  • Ready for 1st MRI post CK . . .
Re: 3 Months Post CK
« Reply #1 on: October 17, 2015, 06:49:18 pm »
Sunny,
As someone who is about 3 weeks away from CK with Dr. Chang, your post really hit the spot for me. I hope you continue to have positive outcomes and enjoy good health!
Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

Doc

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  • “Shake off the BooHoo and get with the program”
Re: 3 Months Post CK
« Reply #2 on: October 17, 2015, 07:09:11 pm »
Good news, Sunny. Very happy for you.

Hey Gary - I did my CK treatments about six months after surgery. Roughly two hours a day for five days straight. I didn’t suffer any noticeable side affects that I could tell, although I was pretty screwed up from surgery. Don’t stress out over it, it’s not that terrible an experience. They give you a little something to help you relax while your head is immobilized for however long the Robot is busy doing it’s thing.

Here’s a thought: I looped the Pink Floyd album ‘Meddel’ on my iPhone during each session. It’s perfect laser-beam brain blasting music. Relax, get your ‘mix tape’ ready, and enjoy the ride. It’s a wild one.

Take Care ;)

Doc
« Last Edit: October 17, 2015, 07:12:45 pm by Doc B. »
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Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

GaryWNT

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  • Ready for 1st MRI post CK . . .
Re: 3 Months Post CK
« Reply #3 on: October 19, 2015, 06:05:43 pm »
Thanks, Doc B.
Hope you continue to get better from the surgery and move forward positively. Can't imagine that you can have ear buds in during the treatments . . . so what's the source of the sound??
Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

Doc

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  • “Shake off the BooHoo and get with the program”
Re: 3 Months Post CK
« Reply #4 on: October 19, 2015, 07:06:16 pm »
An iPhone, believe it or not. My surgery was six years ago.
« Last Edit: January 10, 2016, 03:18:05 pm by Doc »
Logged
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

sunny

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Re: 3 Months Post CK
« Reply #5 on: October 25, 2015, 05:14:18 pm »
Thank you, Gary and Doc B.

Gary, your CK treatments should go super smoothly. I had nothing but positive experiences at Stanford.
And yes, like Doc said, load your iphone with music! They 'll plug it into a dock for you and play it in the treatment room :-)
I wasn't given anything for my nerves, but then again, I didn't ask nor feel I needed it.
If you think you might want something, maybe bring it up beforehand?

I wish you both continued health, as well.
Gary, let me know if you think I can answer any treatment day questions for you.
All the best,

sunny
Logged
Right side A.N.  (11 x 9 x 5)
Symptoms -- 2/18/15 sudden partial hearing loss and constant tinnitus
Diagnosed -- 4/24/15 by my ENT with MRI
Treatment -- 6/17/15 first of three CK treatments @ Stanford with Drs. Chang and Hancock
Treatment Completed! -- 6/19/19

GaryWNT

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  • Posts: 49
  • Ready for 1st MRI post CK . . .
Re: 3 Months Post CK
« Reply #6 on: November 14, 2015, 08:14:40 pm »
I finished three treatments on Friday at Stanford with Dr. Chang and Dr. Hancock. Both were very patient and caring. I couldn't have asked for better care. The treatments went smoothly and I have not had any change in symptoms yet. I know the journey has just started, but as smoothly as it has gone so far, I'm very optimistic!
Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

sunny

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  • Posts: 28
Re: 3 Months Post CK
« Reply #7 on: November 14, 2015, 08:27:57 pm »
Congratulations, Gary!!
I'm glad it all went so smoothly. You had the same team that I did!
I'll be thinking of you. Take care of yourself and rest if you feel the need.

All the best to you in your recovery.

sunny
Logged
Right side A.N.  (11 x 9 x 5)
Symptoms -- 2/18/15 sudden partial hearing loss and constant tinnitus
Diagnosed -- 4/24/15 by my ENT with MRI
Treatment -- 6/17/15 first of three CK treatments @ Stanford with Drs. Chang and Hancock
Treatment Completed! -- 6/19/19

GaryWNT

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  • Posts: 49
  • Ready for 1st MRI post CK . . .
Re: 3 Months Post CK
« Reply #8 on: May 09, 2016, 11:36:39 pm »
I just received a report from Dr. Chang after he viewed my 6 month MRI. He reports that there is evidence of necrosis at the center of the tumor with no evidence of hemorrhage or edema. There has been no real change in the size of the tumor, which he says is good news. My audiology reports indicate stable hearing. Whoo Hoo! Balance is a bit wonky, especially anything that involves bending over . . . good thing I don't wear shoes that need tying anymore! (flip flops mostly)

So . . . onward to the next MRI in 6 more months!
Gary
Logged
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

sunny

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  • Posts: 28
Re: 3 Months Post CK
« Reply #9 on: May 10, 2016, 09:36:06 am »
Gary, what great news!
That's super that the tumor is showing necrosis after only six months (mine did not, but my one year MRI is coming up...fingers crossed...). I am happy things are going well for you, and I thank you for sharing all that positive information.
Continued good health to you!

sunny
Logged
Right side A.N.  (11 x 9 x 5)
Symptoms -- 2/18/15 sudden partial hearing loss and constant tinnitus
Diagnosed -- 4/24/15 by my ENT with MRI
Treatment -- 6/17/15 first of three CK treatments @ Stanford with Drs. Chang and Hancock
Treatment Completed! -- 6/19/19
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