Author Topic: questions...  (Read 3688 times)

arcticrose

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questions...
« on: January 23, 2012, 09:36:39 pm »
I was diagnosed in Nov. with an AN 4mm x 8mm.  I am 59 yrs old.  I have been looking into options..talked to 3 surgeons and was told do surgery by 2 using the middle fossa approach.  The third said "if you were my daughter I wouldn't allow you to have surgery.  With my size tumor he said only Radiosurgery. I liked that answer!  I talked to the first surgeon again and told him what the 3rd dr. said.  He said because I was off balance... if he did the surgery the balance would be back by the time I left the hospital, where if I did radiation, it would take up to 3 yrs to get my  balance back.  #2 didn't really treat ANs so I have discarded his advice. #1 #3 do both surgery and radiation.  Here are my questions..
1. Does it take that long to get balance back after radiation?
and if I have surgery is it that fast???
2. How high is the rate of having the radiation treatment go into cancer?
3. How accurate are these machines? (are there burns?) (Husband is concerned)

I know there are risks no matter what I choose, I am just trying to put things in order.  I am seriously thinking of the CK way to go. I have to make my choice soon. 
4mm x 8mm right side AN found 10/30/11
imbalance, ringing and fullness in ear
CK 3/16/12 San Diego Dr. D. Smith

chloes mema

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Re: questions...
« Reply #1 on: January 24, 2012, 08:33:07 am »
I have no answers for you since I'm still "feeling" my way around this whole AN thing but I suggest you read Richard_T's recent postings.  He just had CK done and wrote about his experience.  We've had some in depth correspondence and it has been quiet helpful for me.
BTW I have the same questions as you.
Good luck.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Richard_T

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Re: questions...
« Reply #2 on: January 24, 2012, 01:56:40 pm »
Hi Articrose!  Welcome to the forum; always sorry for the circumstances, though.  Thanks for the plug, Karen.  I do recommend that you read my recent posts as well as that of others, e.g. Tumbleweed.  It will help give you a perspective on the actual CK prep and treatment.

As for your questions, I am happy to lend my single viewpoint, based upon my research, but I am no physician:

1.  This issue is independent of whether pre- or post-treatment.  My understanding is that as your vestibular nerve is severed/damaged, the other side will compensate.  Sometimes this can be a smooth transition; sometimes it is not and sometimes (though, perhaps, rarely) it is chronic before or after treatment.  It appears to be an issue of whether your "bad" vestibular nerve has short-circuited and is sending improper info. to the brain; until it fails completely and the other side takes over, you might have balance issues;

2. Stanford quoted me that the risk of cancer was 1 in 10,000 after CK because it was pretty theoretical.  However, I was informed just before my CK treatment, by my oncologist that the patient of another physician, about a month prior, was discovered with cancer, even though very few, if any, ever had been before.  She told me that this potentially affects those statistics, though no one at this point really knows how much  (I did the treatment the next day; I could have backed out.)  Given the sheer number of patients that have undergone GK (since about 1980) and CK (since 1994) to date, those odds still look pretty great to me; and

3.  My treatment ended on this past Friday, January 20, 2012.  I have no burns.  The machine is self-correcting within 1 mm and the staff monitors any movement from the constant x-rays through the table to stop the machine at any moment and correct.  Seems pretty accurate to me.  Again, take a look at my posts and that of others to get a feel for the entire CK process from soup to nuts.

Hope that helps a little, at least.

Best of luck with your research and decision.  Keep us posted.



 

« Last Edit: January 24, 2012, 02:15:18 pm by Richard_T »
1.9 cm x 1.6 cm x 1.8 cm AN diag. 12/09/11
CK at Stanford 1/20/12

Jim Scott

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Re: questions...
« Reply #3 on: January 24, 2012, 01:59:37 pm »
Hi - and welcome.

Here are my answers - with the caveat that I'm not a doctor, just a recovered AN patient that underwent both surgery and radiation for a large (4.5 cm) acoustic neuroma. 

Quote
1. Does it take that long to get balance back after radiation?
and if I have surgery is it that fast?

Every AN patient is unique and so there is no hard-and-fast time frame for regaining equilibrium following surgery or radiation. 

With surgery, the balance nerve is cut and it may take your brain awhile to compensate.  However, if the tumor has already impacted your balance nerve, your brain has likely already compensated and regaining balance, with some work on your part (vestibular rehabilitation) regaining your equilibrium should be fairly rapid.  That was my experience.

Radiation poses a similar problem (imbalance) but I don't have the experience to offer a credible response, so I trust that other posters will be able to help.


Quote
2. How high is the rate of having the radiation treatment go into cancer?


It's very low.  Somewhere around 1 in a 1000. 

Quote
3. How accurate are these machines? (are there burns?) (Husband is concerned)

Technology has advanced quite far since radiation was introduced.  CyberKnife has been around since 1987 and was developed by a professor of neurosurgery and radiation oncology at Stanford University in Polo Alto, California.  The CK units are extremely accurate.  The radiation beam is carefully 'plotted' by doctors for the maximum effect on the tumor and minimum effect on you.  To my knowledge, and I'm not a CK expert by any means, you should not suffer any kind of burns from this radiation.

I expect that better-informed posters will add to this thread so watch this space for more information.


Jim
« Last Edit: January 24, 2012, 04:12:06 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Mickey

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Re: questions...
« Reply #4 on: January 24, 2012, 03:53:24 pm »
Hi arcticorse! Around 5 years ago at around 58 years old with approx. a 12x06 mm AN I was diognosed. I`m sure I was pretty close to being in the same shape your in now. I was dizzy just from all the information I had to absorb and confused on what to do. Anyhow, I decided to take my time... started from MRI to MRI with a plan on what I could do to find a natural healthy way of getting better. Progressively little by little I noticed mostly everything improved to a pretty good existance for a man going to be 64 this year. Yearly MRI stable and hope to go every other year after 5 full ones under my belt. Look under W+W brigade and don`t forget this is one of your legitimate options. (especially with your age and small size of AN). I wish you the best and whatever your decisions everything will be OK. Mickey

chloes mema

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Re: questions...
« Reply #5 on: January 24, 2012, 04:24:52 pm »
Thanks for the plug, Karen. 
Any time, Richard.   ;)

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

arcticrose

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Re: questions...
« Reply #6 on: January 25, 2012, 04:38:30 pm »
 Thank you for your answers, I appreciate it.  I have decided on the CK route.  I will post later when I know more.  Again, thank you..  Nancy
4mm x 8mm right side AN found 10/30/11
imbalance, ringing and fullness in ear
CK 3/16/12 San Diego Dr. D. Smith