Author Topic: CyberKnife Journey at Stanford  (Read 9093 times)

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #90 on: September 11, 2019, 06:02:04 pm »
Hi there, Bev!

I am so sorry I've been slow to respond - I didn't get notified that you had commented!

So far, I am feeling pretty great. Nothing new to speak of on the symptom front - my face tingling comes and goes but I've accepted it as a nuisance, as it hasn't gotten worse. My tinnitus has been pretty low-key too. At least it hasn't spiked at all! Hearing...sometimes I trip myself out, thinking it has gotten worse. Then I decide it's the same. I was planning on going for a hearing test in October (I am not due till my next MRI in April) but it's way easier to move on when you are not constantly worrying about the next test, so I might ditch the October hearing test plan :).

I am also not a fan of surgery - previous to treatment, the very thought literally made me faint and sick. When I decided to move forward with CK, I could suddenly breath again. So I know it was the right choice for me. It's interesting that your doctor didn't think you'd get your balance back - I've always thought the PT is what helped your brain rely on the vestibular nerve on the non-AN side! Either way, I am glad to learn you are learning to cope. I hope you have it all sorted out in no time!

I did have 3 CK treatments - when meeting with Dr. Chang,  the notion of 1 never came up.  I can't remember with 100% clarity, but I believe Dr. Chang felt that spreading out the treatments reduces nerve irritation? I could be totally incorrect there, though. I also believe that how many treatment days has something to do with the size of the AN - I am not sure what the over and under is there, though.

It's always good to get a few opinions. As for thoughts I can offer regarding my treatment at Stanford...hmm. Overall it was smooth, professional, and really painless. Other than the emotional angst, of course. I found Dr. Chang and Dr. Hancock, their nurses and technicians to be really great  - willing to answer questions and quite kind.  I am really glad I brought music for the treatment, though. They choices they had available were soothing (Japanese chimes and jazz which I normally enjoy), but made me really weepy. I was already feeling like I wanted to cry, and that stuff just made it worse!  Listening to upbeat music like Beck and Phoenix made me feel less existential dread and the whole treatment seem to go faster.  Post-treatment I was quite on edge, worried that any minute something bad could happen. Were I to go back in time, I might ask the doctors a little more about what to expect after in terns of sensations. But honestly, I think I would have been on edge no matter their answers. So I settled for checking in with nurses periodically. Over time, I settled down :).

I am happy to answer any questions about  my experience  -- so if you have any, fire away!

Best,

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

 


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