Author Topic: CyberKnife Journey at Stanford  (Read 2689 times)

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #30 on: May 22, 2018, 02:30:06 pm »
Freelander - Thank you for sharing that link! I know Aspirin does not work for everyone, and I have no idea if it works for me, but it certainly makes me feel less powerless ;D! As do the other random things I take that caught my magpie eye. I truly hope that Mifepristone DOES prove to be effective and becomes something we can all try. What a wonderful thing that would be!


Stella,  What a research project it is! We are fortunate to have this forum as a way to connect with others. I hope your next MRI is as positive as those before, and wish you a recovery whose trajectory continues to move upwards :)


It's been almost a month since my last CK treatment, and so far, so good. There has been a cycling of symptoms, but all had been there previous to CK.  My main issue is managing my own worries about what lies ahead. I have to constantly remind myself that not everyone experiences  bad patches of symptoms due to CK. Dr. Chang told me that the success rate for ANs my size is 93%, and that of that 93%, about 30% have symptoms for which patients require intervention.  I keep telling myself it is possible to be one of the larger, more fortunate group! But man, it's hard to keep yourself from going into a worry spiral. Nonetheless, I feel generally good and have been doing all the things I did before diagnosis and treatment. For that I am deeply grateful. Anyway, wishing everyone health and happiness! Jessica
« Last Edit: May 22, 2018, 02:34:52 pm by Gtmochi »
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

notaclone13

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Re: CyberKnife Journey at Stanford
« Reply #31 on: May 22, 2018, 03:20:20 pm »
Hi Jessica, happy to hear that you are doing well.  Just wondering, did Dr. Chang mention the nature of the problems that 30 % of his Cyberknife  encounter?  I was kind of shocked to hear 30% have problems that require intervention.  I assume that balance issues and facial spasms would be in this category.  Just remember, that 70% have no significant problems and tell yourself that you are in the 70%.

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #32 on: May 22, 2018, 05:41:22 pm »
Hi M.A.!

So far, so good :).  What I understood Dr. Chang meant by intervention were steroids or things of that nature. He said that many patients never encounter them at all. Yet I had read all about them here and also on the My Acoustic Neuroma blog, and found the reports of increased dizziness, headaches, head/ear fullness, and facial spasms alarming. He also told me that they have no real understanding of why one person's AN swells and another's does not, yet both have positive outcomes. Frustrating! I like knowing every little thing and all the odds of what I am up against so I am ready to fight! Anyway, that number is in the ballpark of what other doctors told me - one said 1/3 of patients with successful outcomes need help with an increase in symptoms. However, those statements may pertain to those whose AN is in the size range of my own.  Dr. Chang was clear that his success rate number of 93% at Stanford was specific to my AN size. He said that were it smaller the success rate would be even higher.  Imagine that! Wish I had found the stupid thing sooner.  That  number of people occasionally requiring steroids or anti-nausea medication to help them grit through the tumor responding to CK may also be different for ANs of a smaller stature  ;D.   You are right! I need to focus on the positive, larger number!
« Last Edit: May 22, 2018, 05:51:33 pm by Gtmochi »
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #33 on: June 19, 2018, 10:34:27 am »
Well, here I am, just shy of 8 weeks after CK and things seem to be going along just fine (fingers crossed it stays that way!).  When I first showed up at the ENT, my symptoms were tinnitus, right side ear fullness and a faint tingling on the right side that I presumed to be TMJ related. If only it were! In short order, it was discovered I had slight hearing loss in my right ear. Right after diagnosis, I had all kinds of symptoms - I attribute the spike in scary stuff to stress! I experienced increased tingling/cold feelings on the AN side, some bouts of motion sickness, ear pain, and tension head-aches. Once I'd calmed down, those did, too - although it took a few weeks!

Anyway, after my treatment at Stanford, the tingling has really subsided - it's barely there. More of a faint, not-very-noticeable cold feeling that comes and goes. Balance seems to be fine - in fact, right before diagnosis I had read that if you can't close your eyes and balance on one foot, it may be an indicator of an AN. To my consternation, I could only do a second or two on one foot with my eyes closed. Post CK, I can hold it for longer - maybe 10 seconds on each foot with my eyes closed. I am not sure this is due to the CK - I really feel stress and exhaustion play a role in exacerbating symptoms. Just like it would in any situation!

Tinnitus  - it waxes and wanes, but is always pretty low level. Right after CK it was almost gone. Bliss! Lately it's back to it's quietly hissing self :).

As I type, I feel mostly fine. The past few days I've noticed head-crawly feelings at the AN side on my temple and above my ear, as well as the sensation of something touching my head there. It's not pressure per se - just sensation. It comes an goes, and literally messes with my head - ha! If I think about it too much, I start to tell myself all sorts of things. I worry that this is the beginning of something that will increasingly get worse and result in major discomfort and the need for medication or medical intervention of some kind. I've been so lucky so far - surely something must go awry? But then I remind myself that it could also be just the nerves healing. Or being affected by the CK. Or the AN leaking stuff that's hurting them, or just another round of weird symptoms - after all, I've had similar feelings before.  I wish I didn't have to wait until October for an MRI simply because I am DYING to know what lies ahead for me. But it's ok to wait, too. I mean - I was diagnosed February 15, and as I've gotten used to the idea of an AN and sought treatment, I've gotten back to normal. Not spending hours upon hours researching. Sometimes the fact that it exists is pushed to a remote enough corner of my mind that I forget it is even there - usually when I am riding, at the gym, or out at a yummy restaurant  ;D.


Hearing - hmmm. Since being tested for hearing in February, I am now aware of its deficits. I can't honestly say if it has stayed the same or gotten a little worse. Probably the latter, since that seems to be the way things go. I for sure can still hear on the AN side and can understand talking on that side as long as there is not a ton of background noise. But it's not perfect. For example, when walking beside a friend talking, I want to have my left ear closest to them. I find I miss a lot or have to try harder to listen otherwise. Also, I have an alarm on my phone that sounds like birds tweeting. Totally slept through it the other day  :o.  Also, I sometimes have a weird distortion when certain pitches of sound reach my AN ear. Sometimes it is pronounced, sometimes not. I try not to think about it, because it bums me out  ;D. I presume it can only indicate deterioration. But you never know!

I am sharing all this in the interest of full disclosure - I was hungry for every stinking detail when researching about my AN and treatment! However, if you're reading this and worried about never being ok again, know that truly, day to day I am good. I have not slowed down at all. I still ride several times a week, go to the gym, go out to restaurants are are noisy, work on my laptop at home, do random yoga poses when I take breaks from sitting and working ( I work from home! Don't worry - I am not doing Down Dog in the middle of an office  ;D). When out in noisy places, I just position myself in a good spot at the table so I can hear conversation, or walk with my good ear closest to my companions. I do take CBD tincture in the evening and then Advil when I go to sleep at night if I have a weird head feeling like the one described above.  In the morning I have my yucky-tasting Green Vibrance and the baby Aspirin. 

Here's hoping that things stay this way all the way through!






« Last Edit: June 19, 2018, 10:40:03 am by Gtmochi »
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

juliawilson

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Re: CyberKnife Journey at Stanford
« Reply #34 on: June 19, 2018, 04:39:55 pm »
I've enjoyed reading about your journey. I did CyberKnife with Dr. Chang in March, 2017. Other than about a week of headaches--not bad but noticeable--about four months after treatment, I've had no issues and no need for post-treatment steroids. I know it's easier said than done, but try to settle in for the long term. Or, to use your excellent horse analogy, we have a long gallop ahead of us. Enjoy it!

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #35 on: June 20, 2018, 08:27:42 pm »
Hi Julia!

How neat you went to the same doctors almost exactly a year before me! I went in April this year. Thank you so much for sharing your experience and thoughts! It's reassuring to hear from someone who has had no issues after CK... and I can totally get behind a long gallop :). Thanks so much!!
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

gary.s

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Re: CyberKnife Journey at Stanford
« Reply #36 on: June 20, 2018, 11:02:14 pm »
Hi Gtmochi,

It sounds like you are doing fine as the weeks are passing. I am having weird sensations on the head also, tingling skin, at times burning, and I have lost a little bit of hair. I was expecting this to happen a couple of weeks after CK, but it is occurring now. My doctors told me it will all pass, and the hair will grow back. I thought my tinnitus was completely gone, but then about a week ago it started up again. Not as bad as it was prior to CK, but I still get buzzing sounds. Hearing is something I am struggling with, but figuring out ways to compensate for the loss. Your symptoms sound very similar to mine, and I am confident you can find ways to cope as I have. One day at a time, and hopefully tomorrow will be as good as today, or even better. Be well Jessica.

Gary
1.70 cm x 2.07 cm AN on the right side
CK April 16-20, 2018 at Barrow Neurological Institute

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #37 on: June 22, 2018, 10:22:28 am »
Hi Gary,

Aren't those weird head feelings the worst?? Not because they hurt, but because they are so creepy. Ugh - the tinnitus came back! I know that feeling...just when you think it's gone  :'(. I hope it settles down for you! Tinnitus is so annoying -- not only because it's a sound you can't get away from, but also (for me at least) it's a constant reminder that there's something wrong and that the AN exists. So aggravating. The hearing is hard, too - I am glad you are figuring out ways to compensate for the loss. Feel free to share any tricks! It's a hard thing. But I am sure you will be able to cope in the end, and so will I! I know 2 people who are SSD (one is an ex-drummer and the other is a friend who lost it in a freak accident). Both learned to manage and seem just fine.  So each time I feel sorry for myself, I think about how SOOOO many people have this problem, and they are all walking around, doing their thing. If they can, so can we! Especially when there are people going through the same thing to whom we can reach out :). Here's hoping things continue upward, and I hope you keep enjoying your summer!

Jessica
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #38 on: July 02, 2018, 07:04:42 pm »
Well, it happened. I had a little episode. It was not fun and at the time quite scary! I was minding my own business, watching The Great British Bakeoff, when I felt a little odd. My tinnitus became more intense, I had a bit of a foggy head, my face tingling roared back. Then I got dizzy. As in I felt I was drunk without the buzz. I stood up - walked around to make sure I wasn’t imagining things. Nope. Dizzy for sure. And the face tingling? It raced up and down the side of my head from crown to jaw like lights on a Tron helmet. Needless to say I was alarmed. Which made everything worse - then I was sure the rippling, nerve feeling on the right was mirrored on the left, then waterfalling on down the front of my face. I thought my hands and feet were falling asleep. There was also a little tiny bit of  pressure - as if someone was rhythmically and gently  squeezing  my head a few times. Kind like you might an orange. Very disconcerting.

Back when I broke my finger (it was a very bad spiral break - my finger pad was facing the wrong way!) we discovered I had Vasovagal syncope. Basically, your body overreacts (to things like blood or emotional distress) and you sort of...well, pass out. It happened to me 3 times the day of the finger break. I was like a Fainting Goat! So when I began to panic about my AN acting like a monster, the same thing happened. I started to feel like I might just pass out in the living room. So my husband hustled me upstairs, gave me three Advil, and lay down beside me. I made myself sleep by telling myself I’d be fine in the morning. And I was.

A little shaken, but ok. Not dizzy and the face tingling had settled, as had my tinnitus. I was scared to go to the gym. What if the same thing happened amongst strangers while on the elliptical? What if it happened while I was driving? But I made myself get dressed, get in my car, and go. Use it or lose it, my mom always says. And it was the best thing for me. By the time I got off the elliptical, I felt strong and more like myself. 

I had messaged Dr. Chang’s nurses at Stanford the night before and they answered me first thing. I also called Dr. Hancock’s nurses for good measure. The net-net was that this was part of the process. I was told that if I have that craziness several days in a row, or it gets worse, or even if it begins happening on the regular, I should let them know. But what I experienced was normal within the context of  ANs and radiation treatment. I was also told it could happen again…or it might not :-X. In the grand scheme of things, it was scary, but not unendurable. Perhaps this is what they meant about some patients experiencing wacky things, but nothing that needs prescription medication.

Since that day (Thursday night - it’s now Monday) I haven’t had any kind of drama. Except me getting worried and over-anxious every night around the same time (which is receding with each night that passes), my symptoms are back to their quiet selves. I went to the gym on Saturday ran all kinds of errands, baked a pie. Sunday I rode and ran errands.  I rode again (two horses this time) this morning. Basically, things are back to my wack-a-doo normal.  I am hoping that this is how its goes - little flare-ups from time to time, but mostly all is well. Now that I know it can come and then go, I feel a bit better about riding it out. Well, I say that now, but I am pretty high strung.

When I think back to before that poo-poo experience, I think there were some warning signs - I noticed I was more tired than usual after a couple rides. I also noticed I had a few bouts of burning rather than tingling sensation under the right side of my tongue where I don't normally get them. I had chalked it up to fluctuation and gone about my business. And maybe that's all it was. Or maybe it was the beginning of my flare up. We'll never know!

Anyway, that’s it for now! I just wanted to share my experience - it was quite alarming, and if someone else finds reassurance in my silly posts because they have the same thing, then I am glad. Hopefully I’ll have no need to pop back on this thread and post before the end of July, which for me will mark 4 months post CK.
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

Freelander

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Re: CyberKnife Journey at Stanford
« Reply #39 on: July 04, 2018, 09:33:08 am »
Happy Independence Day, there's more to that than Happy Birthday USA!

Thanks for posting Gt.   Good to know that your life has bounced back from what was a chaotic few days, and reassuring to know that Dr. Chang's nurses were quick to respond. 

Pulling for ya!

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #40 on: July 06, 2018, 07:33:41 pm »
Thanks, Freelander! Happy Independence Day to you, too!  I am glad Dr. Chang and Dr. Hancock's nurses were so responsive, too! All's been well after my little incident, so fingers crossed!  ;D
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

SP

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Re: CyberKnife Journey at Stanford
« Reply #41 on: July 09, 2018, 05:50:59 am »
I’m so glad you got through that craziness ok ! One day at a time is all we got  ;D
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #42 on: July 12, 2018, 07:34:41 pm »
Thank you, SP! I have been thinking about you - your 3 year (right?) MRI is right around the corner!  I am wishing you the very best!

Also, you are so right about one day at a time! It's the same for everyone - even those who don't get told they have an AN. I mean. Life certainly can change in an instant, can't it? Jeeze.  Anyway, I really hope you have great news in August!

1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

SP

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Re: CyberKnife Journey at Stanford
« Reply #43 on: July 19, 2018, 03:06:38 am »
Thank you for remembering and your kind encouragement. Yes year 3 MRI will be in a few weeks ... it's always a stressful time for me but thankfully I get a reprieve this year... no Gadolinium required so no needles or injection yiay! I'll post an update with results then.

take good care,
Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #44 on: July 23, 2018, 06:27:21 pm »
Well hey there, 3 month CK anniversary! The 25 of this month marks the beginning of my 4th month post CK…and I am pleased to report all is well. Aside from that one freaky experience I had earlier in the month, things have been well. Better than well in many respects - with the actual treatment behind me now, I’m relaxing into this ride. Its idiosyncrasies are now familiar, and I am spending less time fretting.  Occasionally I’ll feel on the cusp of getting worse before getting better, but I suspect many of those moments are generated by focusing too much on reading into what is going on on my face, head or ear and then proceeding to Anxiety Land. The more I keep focused on living and moving forward the better things become.  As always, now I’m worried I’ve jinxed myself, but I’ve knocked on wood here in my office so…

I truly think that a big part of my feeling good has to do with staying as active as possible. I know that riding horses and going to the gym are not possible or of interest to everyone, but if you can move, push to do so. Every single time I feel a smidge odd, it’s resolved by the gym, riding, or a walk with my dogs around the block.  I actually wish I had worked past my panic during my little episode and gone for a walk (with my husband as a steadying hand). I’m willing to wager I would have felt better. If there is a next time I am not laying down without trying harder to fight!

Another thing that has helped keep me focused on the future and now and is making plans. This month my mom visited, we went to a concert at the Hollywood Bowl, I had a baking class and lesson with a well-known instructor who earned herself medals in the Olympics! For August,  I signed up for a couple baking classes and another riding lesson with that trainer .  Those exciting things keep my eyes ahead and not inward. I get there, have fun, and on to the next. I space them out so that I can use them as you would monkey bars - to grab one, pivot, and swing to the next. Before I know it, the month is done!  That’s important for me, since for whatever reason the 6 month MRI is one I am very eager to hurry up and get here. I realize that it is very likely I’ll be waiting longer for any indication of the treatment’s imapct on my AN, but nonetheless that milestone looms large as a pivotal door to pass through.

My symptoms are pretty much the same as they were before CK. There is some fluctuation in all of them.  Tinnitus remains low key and largely ignorable, I've still got vague sensations in my cheek, fullness comes and goes, motion sickness feelings very occasionally...but all of it is manageable, and I honestly can't really point to any one thing that's  affecting quality of life. Other than dreading what's to become of my hearing. At this time, the loss (I can still hear with that ear on the phone so I am lucky) has been manageable and navigable. Noisy places can be a little worrisome + tiresome, but I just try to sit in the right spot to hear conversation. It certainly doesn't prevent me from eating out or going to the Hollywood Bowl ;D.

Anyway, assuming all is well for me in the interim, I’ll post back here in a month!

PS: Stella - I can't wait to hear about your great MRI results next month! That's wonderful you don't need the contrast now. I loathe that stuff. I have a mild allergic reaction, so they give me steroids and Benadryl in preparation and it's yucky. In addition to the indignity of a needle!
« Last Edit: July 23, 2018, 06:48:57 pm by Gtmochi »
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

 


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