Author Topic: Newbie questions about symptoms  (Read 8141 times)

MichaelNorCal

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Re: Newbie questions about symptoms
« Reply #15 on: November 07, 2016, 09:49:34 am »


Again, not accurate info there.  Thousands upon thousands of people get radiation treatment, GK or CK with AN's that size and pressing on the brain stem.   My own was 2.2cm x 1.6cm and pressing very much on the brain stem.  Happily 6 years after GK treatment it has now pretty much receded off the brain stem.  I suggest getting opinions from the very best docs regarding all of the treatment options.   Good luck to you.
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Thanks for the info Rupert. Yeah, it's challenging sorting through the opinions, experiences and facts shared here by our fellow club members. I know that everyone is well intentioned and the support has been super-helpful.

I'm curious, why did you go with GK? My inclination is to get the freakin' thing out of my head! Was age a factor?

I am waiting to hear back from the specialists in NorCal Kaiser. Fortunately I'll be well prepared and educated because of this community before I go in.
vestibular schwannoma, right side
10/31/16 18mm x 19mm x 17mm (diagnosis day)
Awaiting treatment options

arizonajack

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Re: Newbie questions about symptoms
« Reply #16 on: November 07, 2016, 10:43:58 am »

I definitely agree about the IQ thing too. Sometimes I just stare at a screen, or page, or whatever and have no clue what I'm looking at, or what I'm supposed to do. It's exhausting, for sure.


I think a lot of that is due to stress.

Let's face it, being told you have a brain tumor is a monumental revelation that fills your conscious and subconscious mind. Even if you are consciously trying to think about something else, your subconscious mind is hogging your memory resources like a computer program running in the background that slows your computer to a crawl.

It gets better over time.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

ANSydney

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Re: Newbie questions about symptoms
« Reply #17 on: November 07, 2016, 04:15:31 pm »
Totally agree. Always get a craniectomy opinion from at least two ENT/neurosurgeons and a radiosurgery opinion from at least two radiosurgeons.

(I've found that surgeons favor surgery and radiosurgions favor radio surgery. Funny about that.)

MichaelNorCal

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Re: Newbie questions about symptoms
« Reply #18 on: November 08, 2016, 12:02:08 am »
And then there's the time when you know more about ANs than your primary care Dr....

 ;) ??? ::)

One week into this adventure and I feel like I'm quickly getting my AN degree.

Can anyone else relate???
« Last Edit: November 08, 2016, 12:03:46 am by MichaelNorCal »
vestibular schwannoma, right side
10/31/16 18mm x 19mm x 17mm (diagnosis day)
Awaiting treatment options

ANSydney

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Re: Newbie questions about symptoms
« Reply #19 on: November 08, 2016, 12:24:33 am »
Went to my first ANA Australia meeting in Saturday and was told that surgeons are too busy operating to read the latest papers. If you're reading madly like I am, your more up to date than your surgeon. (But he will know more about the overall aspects.)

Greece Lover

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Re: Newbie questions about symptoms
« Reply #20 on: November 08, 2016, 09:00:12 am »
My primary care physician did a bunch of research on my behalf to get up to speed to help me make a decision.  Many of them will never see this in their careers, so we can't expect them to know all the details off the top of their heads.  It's a specialized field.

I'm not sure I agree with ANSyndney about the surgeons not being up on the latest research.  I suppose that could happen, but certainly was not my experience.  Although, that is partly why I chose (and was lucky to live close to) a place that is a high volume surgery center along with a research location. 

a high volume place, if you have surgery, is also important for recovery, so that the nurses and other doctors know what to expect and what are experiencing in the first few days after surgery.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

MichaelNorCal

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Re: Newbie questions about symptoms
« Reply #21 on: November 08, 2016, 11:36:54 am »
Thanks for the great input everyone.

When i started this adventure (all of 8 days ago!), I was adamant about surgery and having this little guy evicted from my head.

Now, I'm hearing more and more folks who opted for CK or other types of radiation.

For those of you who are on the other side of treatment, why did you chose one over the other?

The idea of brain surgery is scary, but the thought of it being gone is pretty darn attractive. The symptoms are really impacting my life in a major way...
vestibular schwannoma, right side
10/31/16 18mm x 19mm x 17mm (diagnosis day)
Awaiting treatment options

researcher

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Re: Newbie questions about symptoms
« Reply #22 on: November 08, 2016, 01:13:48 pm »
Hi! I am late to this discussion. Sorry that you have to join this club.

You can get free opinions from House, USC-Keck, Stanford and probably other places. You send in your MRI and report. Then doctors will call you and talk to you about the options. It's more information for you.

This is for fun. My Schwannoma - David Minnick Version https://www.youtube.com/watch?v=52yucjy_Q8s

I received my "AN degree" and surgery almost a year ago. Take care and good luck to you!


MichaelNorCal

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Re: Newbie questions about symptoms
« Reply #23 on: November 11, 2016, 10:21:14 am »
So, I had my first phone consult with a possible neurosurgeon on Wednesday...

Why do these guys have such a hard time acknowledging that we all have different symptoms and some of those may not conform to their ideal of what an AN should be?  >:(

Again, I was told that my symptoms were completely unrelated to the AN and were simultaneously coincidental!!! Seriously??? In my short time here on ANA I would say that over 50% of people report fatigue and mental effects of some sort. Twice now surgeons have told me that those are not related to my AN.

On initial look, I probably am not a candidate for CK as there seems to be some cystic cells in the tumor; meaning there's fluid, which rules out any kind of radiation.

I'm meeting with all 3 docs on the team in person on Dec. 21st.

Still trying to get Kaiser to give me the green light to go out of my area and meet with the team in San Diego, Dr. Cueva et al.

Fingers crossed...
vestibular schwannoma, right side
10/31/16 18mm x 19mm x 17mm (diagnosis day)
Awaiting treatment options

jsteph

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Re: Newbie questions about symptoms
« Reply #24 on: December 13, 2016, 02:13:32 am »
MichaelNorCal,

Kinda late to post here but maybe my experience with symptoms might be relatable and also I'm new to posting here too so I'm using this to get my feet wet!

Along with quite a lot of hearing loss and constant but varying degrees of "wonkiness", I have stiff and achy neck and shoulder muscles most all the time and when I sleep, I feel like my muscles in these areas continue to work overtime so I'm not able to rest the way I used to. I also have considerably less stamina than I had previous to having my AN. I often get tired by mid day. I nap if I can and sleep more at night, as well. I also feel less mentally sharp, likely from being a little tired much of the time.

My consulting Neurotologist (at House) confirmed that the muscle firing and general fatigue are from the vestibular nerve impairment that causes the brain to respond to the faulty signals it receives, misdirecting muscle function. It made sense to me. In the recent ANA survey, I recall that on average, folks reported around a 20% reduction in general quality of life with an AN. That seems about right to me, though I hasten to add that Life is still good-a little more challenging-but still good!

My tumor seems to be about the size of yours and I'm leaning very strongly toward GK, maybe CK. Seems outcomes are similar to the surgery options but without the hospital stay and down time which would be risky and costly for me.

I know you'll have your consultations soon. I hope this goes well and that you continue to find your best path forward!

James, Southern Oregon


« Last Edit: December 13, 2016, 02:27:34 am by jsteph »
Rt. side AN diagnosis 2-2015: 15 x 10 x 10 mm
MRI 9-2015:  16 x 11 x 11 mm
MRI 11-2016: 19 x 13 x 13 mm
MRI 4-2018: 19 x 12 x 14
Watching & Waiting

 


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