Four Days Post-CK

[sunny]

Hi Folks,

Just an update for anyone looking for CK experiences...

I finished my three day treatment at Stanford on Friday and had a quiet weekend as the steroids wore off (I was given one pill a day for the three days of CK).
My overall feelings since the weekend have been: a bit woozy, full-headed, and a little more tired than usual, but nothing that kept me from errands, laundry, and part-time work. I've just paid close attention to my "limits" and didn't overdo. My tinnitus seemed increased on Monday, but has settled down to its usual buzz today. I've taken Tylenol twice for a slight headache, but honestly don't know if it did anything.

Keeping in mind that this is "recovery," despite not having stitches in my head from surgery, I am eating well, resting when I feel like it, and getting some fresh air when I walk the dog. Today, I'm going to go to the gym and do a light workout, a little balance work, and maybe some time on the treadmill. For me, I can see inertia as the enemy, so I don't want to sit around and wallow. "Keep swimming!"

I do feel different than I did before CK, I feel more fragile, like I've had a procedure, and that I am not invincible.
I'm being kind to myself and trying to accept this new normal for as long as it may last.

Thanks, as always, to everyone that posts here, questions AND answers, it all helps.

sunny


(For anyone looking for a more detailed account of CK, I would recommend Bobette's posts.
Her experiences were very similar to mine!)

[kejac]

Congrats on completing your sessions of cyberknife.

I also had 3 sessions done at Stanford, a pill a day before each session. The first two sessions went just fine, all I did was lay on the table listening to Tchaikovsky while the robotic arm delivered its dose of radiation. The 3rd day after treatment I noticed a big change, hearing loss, fullness/numbness, and increased tinnitus. I was put on a dose pack of steroids by my oncologist, Dr Soltys.

For next few weeks I felt great! Then slowly after the steroids wore off I started to feel the effects of the radiation and what it was doing to my tumor. It wasn't terribly bad or too overwhelming, I haven't missed a day of work because of my tumor. Around the 4 to 6 month mark I called my Doc complaining about some symptoms and he was quick to put me on a dose pack again, it worked to decrease the symptoms. 

I'm now on month 16 and feel ok, maybe some increased tinnitus. Waiting for the 2 year mark for another MRI.

Just thought I'd share my ongoing experience with you and everybody.

Again, congrats on completing your sessions!

[sunny]

Hi kejac,

Thanks for your supportive note. And congratulations to you, too on your (relatively :-) smooth recovery from CK. Sixteen months have passed and you sound great! That's wonderful.
Isn't it interesting how everyone reacts differently to the radiosurgery?
Are you finding that your hearing in your AN ear is staying the same since treatment, apart from your increased tinnitus, that is?
Did you ever have any vestibular issues before or after CK?
I hope your two year MRI shows successful treatment.

I'm crossing my fingers for an uneventful recovery.
Today I'm exactly 2 weeks post-CK and feel very good. Let's see what happens if and when this little guy starts swelling...

Thank you again,
Take care,
sunny

[kejac]

Hi Sunny,

Yes, it is interesting how folks react differently to radiosurgery and it made for a difficult decision when selecting treatment. In the end it just sounded better than surgery.

Pre-treatment my hearing was perfectly fine, after treatment it has decreased a bit. I've had three audiograms with Dr Honey Gholami.
First was good, pre-treatment. Second and third, after treatment, showed a slight but steady decline. I still have serviceable hearing and also talk on the phone using that side. But, I definitely notice the loss.

So, one day while driving I started to get dizzy, not so dizzy that I had to pull over, just enough to make me think... I must be hungry I haven't eaten anything for a while. The dizzy feeling went away after 30 minutes and a candy bar. A couple of days later it happened again and this time my face went numb, left side. I drove myself to the ER where they did a cat scan and MRI. That's when they discovered the tumor. That's really the only time I felt dizzy before or after treatment. I feel my balance has been compromised. I can still walk a straight line but, I cant head bang to music like I used to without getting off balance and losing my focus.
To answer your question I would say no (except for the two dizzy spells) pre-treatment and yes, I have had issues with my vestibular nerve post treatment but, its improving.

If I can remember, things ramped up for me, meaning it got a little uncomfortable was right after my treatment, around the fourth month, and again around the ninth month.

Good luck, good job, the hard part is over and I wish you symptom free while you wait the next six months.

kejac

[sunny]

Thank you, kejac. Your notes meant a lot.
All the best to you.
-s