Author Topic: CyberKnife Journey at Stanford  (Read 31380 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%… and declining.
Daily headaches resolved with help of neurologist.
Cyberknife July 2020 at Stanford.  Dr. Chang.

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

saratrehan

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Re: CyberKnife Journey at Stanford
« Reply #93 on: June 18, 2020, 09:51:55 am »
Hi Jessica,

Thank you so much for posting your CK experience. It has been so helpful for people like myself who just underwent radiation therapy. I had Gamma Knife in NY at Columbia - Gamma Knife is the technology employed by doctors here, but I have heard that treatment outcomes are fairly similar for either method CK or GK.  I am unfortunately in the rare group that has had surgery, regrowth, and now radiation. When i was first diagnosed in may 2018 (at 36 weeks pregnant!) measurements were around 3cm and I was told I was not a great candidate for radiation. I went ahead with microsurgery 5 weeks post partum and had a bit of a rocky aftermath , but overall was fine. Lost hearing in my right ear, but was able to walk unassisted 10 days post surgery. And back to my normal working out 3 months post. 1.5 year later, my symptoms increased (facial numbness and severe dry eye), so i had an unscheduled MRI, revealing rapid growth  from my previous MRI, and 2.5cm in (2.1x2.5x1.7) measurement. This time my doctor told me I was a candidate for radiation, and it would be the better approach rather than another surgery (i presume this is in order to save my facial nerve). I had gamma knife just about 5 months ago, and have experienced a whole host of symptoms. I was on decadron for 10 days about 1 month after due to extreme light headedness, and radiating tingliness, as well as overwhelming fatigue. The steroids helped, and 2 months went by where I was totally fine. Walking 6-7 miles daily, and just trying to manage the best I could, although with very severe anxiety. At exactly the 4 month mark, i developed a facial twitch, most cumbersome in my upper eyelid. It's been 3 weeks and its driving me nuts! the lip, eyebrow and cheek is not as pronounced, but the eye is very irritating. I took 2 rounds of medrol dosepack, and am taking Gabapentin 600mg daily (2x a day). Nothing really seems to be helping, and I am wondering how long yours lasted? Wondering if I should be pursuing any botox type treatments etc which I have heard can help or just try to wait it out till after scan. It is reassuring to read your twitch was transient and not permanent. I am 6 weeks away from my 6 month post GK checkup, and I am very anxious and nervous about  the initial results. But it was helpful to read you had a similar sized tumor and have had great success. Many thanks for chronicling your journey, and I will be sure to pay it forward and chronicle mine post this 1st scan.

very best,
Sara
DX May 2018 - 29x24x27
RS Surgery - DR. Sisti NY Presbyterian July 2018. 95% Removal. SSD, Tinnitus, Facial Numbness, Severe Dry Eye
June 2019 - Stable 17x14x14
Dec 2019 - Rapid Regrowth - 21x25x17
January 29 2020 - GK NY Presbyterian Dr. Sisti & Dr. Wang

Gtmochi

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Re: CyberKnife Journey at Stanford - 5 year update
« Reply #94 on: October 08, 2023, 04:09:55 pm »
Wow-- 5 years went by fast and slow. It's been a long time since I updated last!

This last MRI showed that my AN was stable and had even gotten smaller!

In April 2018, when I had CK at Stanford, my AN measured 2.5 x 2.5 x 2.6.

As of September 2023, it measures 19.9 x 23.3 x 23.6

So now I don't get a scan for three years! I can hardly believe it.

Previous to my appointment, I was 100% convinced it had grown. While I didn't experience any new symptoms, such as dizziness or imbalance, my facial feelings had become more intense and regular.  My right under-eye had started twitching sporadically (maybe once every few weeks).  I was sure I felt a weird ear sensation.

But I was dead wrong. I  cannot stress enough how positive I was that Dr. Chang would give me bad news. I told my husband I felt it in my bones!! Wrong, girl.

So, if anyone out there is in the same spot -- take heart. Experiencing an uptick in existing symptoms does not necessarily mean your AN has grown.

Below are all the measurements from treatment to my most recent. I'm sharing because I know that information was so helpful to me when I was deciding what to do or experiencing weird feelings and having anxiety about my dang AN.

2/2018 (diagnosis) 2.5 x 2.2 x 1.8
4/2018 (at treatment): 2.3 x 2.5 x 2.5
10/2018: 2.5 x 2.6
4/26/2019: 23 x 25
10/2019: 2.5 x  2.7
4/30/2020: 2.5 x 27
10/8/20: 2.3 x 2.7
3/18/22: 2.2 x 24
9/2022: 19.9 x 23.6

As you can see, there was a period in which one of the measurements -- the medial-- seemed to get a little bigger. Nonetheless, Dr. Chang and Dr. Hancock believed my AN was stable, but it was something they were watching. So that was fun to deal with. I did a lot of meditating and trying not to think about it! Also, you'll see there's definitely a spread in the measurements -- that was, of course, during the worst of COVID, and I got my MRIs at home instead of in Palo Alto. Sometimes (I'm told) the head placement and machine make it hard to compare apples to apples - I think that may be part of the thought process behind the margin of error as far as regrowth goes.


I had a hearing test in October, and it's remained the same as it was for my last two tests. At first, I had a steep decline, but now it seems to have leveled off.  My hearing aid is a help, and I feel very fortunate to have hearing in my AN ear. Certainly, that could change, but I will enjoy it while I can!

I am still riding horses 4-5 times a week, lifting weights, and doing everything I like to do. I feel really good and very grateful to have a positive outcome.

So if whoever is reading this is me five years ago, bleary-eyed at 3 a.m.,  obsessively mining this forum and the FB page, it will be okay. Or at least your worries will be different from this exact moment. You'll be on the other side of whatever dragon you're facing now. It might be a new dragon, or it might be rainbows and unicorns. But at least you won't be where you are right now.


That was something I'd tell myself all the time. I'd say to myself, 'In six months, this period of time will be behind you. You might not be where you want to be, but you won't be here, freaking out about what to do." My little mantra changed with the situation, but it helped me to think that whatever anxiety I was experiencing would soon pass. Maybe it will be replaced by another thing to worry about, but at least it wouldn't be the same dang thing.


 This is much longer than I intended, but there you have it.

I wanted to share my positive story and maybe make someone out there feel more at ease.  I'll check back in three years at my net MRI!

Until then, good fortune and health to everyone!
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

DanFouratt

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Re: CyberKnife Journey at Stanford
« Reply #95 on: October 08, 2023, 08:01:59 pm »
Thanks for sharing.  I am three weeks post CK and feel great.  My hearing is worse but the docs said it would get batter over time. 
Thank you for confirming.

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

SP

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Re: CyberKnife Journey at Stanford
« Reply #96 on: October 09, 2023, 07:27:12 pm »
Hi Jessica!!
It's great to hear from you and thank you for sharing your latest news, it was really heartening to read -- it's wonderful you are doing well !
It's definitely great not to have the worry of an MRI for 3 years   :D

my best,

Stella

My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

mwatto

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Re: CyberKnife Journey at Stanford
« Reply #97 on: October 09, 2023, 08:32:23 pm »
So happy to hear your news! My own uptick of symptoms turned out to be TMJ - having to use a night splint which I dont like at all. My AN also shrank a bit more with March MRI this year- but then I got Covid so I do feel a bit anxious if that made a difference- wont know tho till next year. Your good news gives us all hope!
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #98 on: October 16, 2023, 05:14:39 pm »
Hi Stella!

Thank you! And it was so wonderful to read your last update ( better late than never!) and it's so great to hear you're doing so well.  I am looking forward to no MRIs for a while, that's for sure!
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

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #99 on: October 16, 2023, 05:21:13 pm »
Hi, Michelle!

Thank you! You know, my audiologist suggested the same thing -  that TMJ could be to blame. I have a night guard/splint (I call it my bitey - lol) but maybe I'm working my jaw more these days. As for COVID, I've had it a few times (yay, me). The first was at the beginning of the pandemic (pre-vaccine), and the other, I think, after I got the second booster. In between, I had an MRI, and it was one of those no-changers. I will say that while COVID was having its way with me, my tinnitus and facial feelings went up. All of this is to say -- I had a similar experience, but in the end, COVID didn't affect the growth/shrinking at all. I hope that sets your heart at ease a bit, especially since your AN has already gotten a bit smaller :)
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

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #100 on: October 16, 2023, 05:24:23 pm »
Hi, Dan!
That's great you're feeling so good post-CK. I hope your hearing does stabilize -- it's a bit scary at first as it declines, but we adjust :)


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