ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: sunny on September 16, 2015, 02:33:42 pm

Title: 3 Months Post CK
Post by: sunny 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
Title: Re: 3 Months Post CK
Post by: GaryWNT 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
Title: Re: 3 Months Post CK
Post by: Doc 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
Title: Re: 3 Months Post CK
Post by: GaryWNT 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
Title: Re: 3 Months Post CK
Post by: Doc on October 19, 2015, 07:06:16 pm
An iPhone, believe it or not. My surgery was six years ago.
Title: Re: 3 Months Post CK
Post by: sunny 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
Title: Re: 3 Months Post CK
Post by: GaryWNT 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
Title: Re: 3 Months Post CK
Post by: sunny 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
Title: Re: 3 Months Post CK
Post by: GaryWNT 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
Title: Re: 3 Months Post CK
Post by: sunny 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