Author Topic: CyberKnife Journey at Stanford  (Read 15269 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

Colorado Alex

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Re: CyberKnife Journey at Stanford
« Reply #91 on: March 05, 2020, 08:34:05 pm »
Jessica,
I just read this entire thread.  I so appreciate all of your comments.  I am early in my journey but so much of whim going through is the same as what you describe.  The size of my AN is just a bit smaller.  I have very slight 10% hearing loss.  The though surgery frightens me.  My first official consult with doctors and they recommended surgery.  I really want to go see the team at Stanford for a second opinion.  I really feel like CK is the path for me. 

Did you contact them (Stanford) for an appointment or did you get a referral? 

I don’t want this drag on any longer than necessary but I also do not want to feel pressured to make a decision that I don’t feel comfortable with.

Anyway, thank you for giving me hope that Cyberknife will work for me.  I don’t know if it will or not but I’m hopeful.
Thanks
Alex
Diagnosis 12/26/2019  2.1 x 1.9 x 1.4 cm left side AN, hearing 90%
Daily headaches.
Seeking multiple opinions.  Trying to keep it together until I have a plan.

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #92 on: March 05, 2020, 09:31:47 pm »
Hi Alex,

I am so glad all my posts helped you in some way! Right now - the beginning of your journey - is the hardest. I swear! The unknown is pretty scary when it comes to our health and future.

First, know that no matter what you choose, you are making the right choice for you. If you're like me, you spent hours (HOURS!) combing through and poring over posts on this forum. And one common theme you'll find is that most have to evaluate their choices, parse truth from bias, and decide for themselves.

Speak with doctors who focus on surgery, doctors who focus on both, and those that focus on CK/GK. Do not speak only with one doctor or hospital group. The recommendations you get will likely vary with the disciplines practiced. Heck, the size they measure your AN to be will vary to a degree, too! They all have their own methods.  I know you don't want to let this drag on -- neither did I! But it's worth speaking to a few doctors. It'll wind up giving you peace of mind regarding how to proceed, and the knowledge you gather will give you confidence. My process didn't take long. I was diagnosed on February 13, and I think I scheduled my CK by mid-March.

What I am trying to say is, for sure speak to Dr. Chang or someone similar. I didn't get a referral for all but one of the doctors with whom I consulted. I just researched and contacted them on my own. Many consult via phone - you send them your MRI and that's that. Back when I reached out to Dr. Chang (which I did through his email that I found on the Stanford site somewhere) he emailed me right back! I sent him my AN size, and he got back to me with his success rates for that size AN.

From there, you can book a consult - he'll only consult in person. Or you can book a consult followed by CK. Which is what I did! I figured if something happened that alarmed me or backed me off of CK, I'd cancel and go home. But I met Dr. Chang and Dr. Hancock and I was a-ok with them and their data!

Things will be ok, Alex. One thing I repeated to myself over and over during the beginning was "this time next year, this will have passed." and it did. And I am ok. And you will be, too!

Please feel free to DM or message me any time. I am also more than happy to chat on the phone!
Warmly,
Jessica

« Last Edit: March 05, 2020, 09:34:28 pm by Gtmochi »
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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