ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: YACEAS on February 10, 2012, 10:54:47 pm

Title: Newbie here -- completed treatment at Stanford on Feb 10, 2012
Post by: YACEAS on February 10, 2012, 10:54:47 pm

Hi, Everyone!

From Feb 6 to Feb 10 I underwent two days of preparation and three days of Cyberknife treatment under the team at Stanford.  So far ... no side effects.  I'm just one statistical sample but every reported new experience may have something to help somebody so I'll post my outcome.

Feb 18, 2012:

Here's my post-treatment regimen:

Acupuncture about every other day immediately following my return from Stanford U.  My acupuncturist also holds an M.D.  I'm also consuming the following nutritional supplements:

IgG 2000 DF 1250 mg twice daily
Cayenne 500 mg twice daily
biomor curcumin 1500 mg twice daily
DaVinci ALL-ZYME 1 tablet twice daily
CoQ10 200 mg twice daily
Arctic Cod Live Oil 1000 mg twice daily
zyflamend softgels one twice daily
modified citrus pectin 3 heaping teaspoonfuls per day
Kyo-Green 4 heaping teaspoonfuls per day
Vit B12 500 mcg per day

I'm not "preaching" this or even recommending it.  I'm just reporting.  My wife's the researcher and this is what she came up with.  She outlined some good justifications for each one.  As for acu, I became convinced of the merits of acu when, after my fifth bout with severe lower-back pain and concomitant sciatica, and after two months of only minimal relief at the Sports PT therapy office down the street, acu "took it away" completely by the day after a one half-hour treatment.  My acu says that the sciatica nerve heals faster because it is less complex than a cranial nerve.  He's giving my cranial nerves  18 mos to heal if I keep up with regular acu.  Stay tuned.

So far I have experienced no worsening symptoms to speak of and one improvement has been the lessening numbness of my tongue.  I'm keeping a journal through all of this, too, so that I can trace progress.  Like others of you on this forum: I'm not taking this AN lying down!

Title: Re: Newbie here -- completed treatment at Stanford on Feb 10, 2012
Post by: Jim Scott on February 11, 2012, 01:01:30 pm

YACEAS ~

Thanks for your contribution.  Positive CK outcomes, although certainly not unusual, are always welcome news.  Looking forward to your updates.

Jim

Title: Re: Newbie here -- completed treatment at Stanford on Feb 10, 2012
Post by: Richard_T on February 13, 2012, 03:38:11 pm

That's great news.  I too just completed CK at Stanford on January 20, 2012.  No major symptom changes here either.  Here's hoping that we experience nothing severe through the next year and a half!

Title: Re: Newbie here -- completed treatment at Stanford on Feb 10, 2012
Post by: YACEAS on February 24, 2012, 05:33:13 pm

It's been two weeks now since my last day of CN treatment at Stanford and I have to say the side effects baffle me in that they are so dynamic.  Within the space of one hour I can experience a minimum of numbness on my face and then a maximum.  Generally speaking, the side effects are at a min when I first wake up and then go up and down in intensity during the day.  But so far, none of them has greatly impaired me, except for a some transient fatigue.  Is this typical, a constantly changing intensity of side effects?  Some good news is that my tongue is almost all "thawed" and I'm hoping my teeth and gums on the affected side will be thawed out soon as well.  Take care, All!

Title: Re: Newbie here -- completed treatment at Stanford on Feb 10, 2012
Post by: Ric on October 07, 2014, 07:44:48 am

Hello, I recieved CN treatment for a AN about 7 years ago at Stanford with Steven Chang,  and in the last year and a half, have been experiencing periods of numbness, tingling on my gums and tongue and slight burning sensation at times on my tongue like i burned it on a hot liquid which i have not.  The episodes last a couple or weeks then go away, but now the episodes are lasting much longer 4-6 weeks, I'm currently have one and my doctor does not seem to know why.  wondering if this is a side effect of radiation.  Some foods make it worse.  Are there things to do to lessen the effects?  Does the numbness spread? Just got on this forum and not great at navigating it yet. 

Title: Re: Newbie here -- completed treatment at Stanford on Feb 10, 2012
Post by: PaulW on October 07, 2014, 04:13:13 pm

What size was your AN...
Sounds like some possible issues with the trigeminal nerve.
Can happen I believe for tumours that press against the trigeminal nerve...  Typically over 2cm
My non medical opinion which should be taken with extreme caution.
Tumour is shrinking and is sticking to trigeminal nerve. As tumour shrinks, it pulls on nerve and causes issues... Or radiation has caused long term damage or tumour is growing.

Get an MRI, the problem may pass especially if it's caused by the shrinking tumour
The trigeminal nerve should be visible on the MRI

Title: Re: Newbie here -- completed treatment at Stanford on Feb 10, 2012
Post by: john1455 on October 13, 2014, 09:38:45 pm

Ric,
You can contact Stanford directly about your concerns. Check this site out:
https://myhealth.stanfordmedicine.org/myhealth/

As others on the forum mentioned, this can be due to the trigeminal nerve.