Newbie questions about symptoms

[MichaelNorCal]

I received my diagnosis on Halloween (Trick or Treat!!!! ;-)

I have a 19mm x 18mm AN on the right side.

I'm dealing with Kaiser, which so far seems to be ok.

Yesterday, I met with an ear and neck surgeon. I'm not really sure why I met with her, as she isn't the Dr. who will eventually provide any treatment. It seems like the only point in the meeting was to get the "official" diagnosis.

It was my first opportunity to see the MRI image of the tumor. It was pretty weird to finally see the walnut size mass that has given me so much discomfort over the last couple of months. But, as my Grandma Helen always used to say: "Get it out of there, it ain't paying rent!" Which when you think about it can really apply to so much...

This Dr. seemed to be pretty unaware of the possible effects of an AN and in fact was quite dismissive when I explained what I was experiencing.

Which brings me to my question:

Are my symptoms real or am I imagining some of them? As I type these words, I know the answer, but I just need a little validation and support here.

I now realize that the ear aches and balance issues that I've experienced for the last year or so were not just about getting older. In the last 6-8 weeks, I've been exhausted. One day I slept for 16 hours. I'm dizzy. My face is cold most of the time.

And the BIG one- I have a really hard time thinking, which is really tough because I'm a writer. Ideas and solutions just don't come to me like they used to. I feel exhausted after just 30 minutes of concentrated work.

I explained this to the Dr. yesterday and she flat out told me that was not a symptom of AN. She was so dismissive, as if I were making it up. Her response has led me to question my experience.

So, anyone else out there feel that way too? Is cognitive impairment one of the symptoms?

I gotta figure that with this big ol' chunk of stuff pressing on my brain that some pretty weird stuff is gonna happen.

I am super-grateful for this community, and appreciate any support you guys can offer.

Many thanks,
Michael

PS- His name is Tommy, as in Tommy the Tumor. And it's time for him to leave. I invite Tommy to move on to another home with peace and love.

[arizonajack]

Your symptoms are real and your doctor is an idiot.

As you read the chronicles of ANA members you'll find that each of us experiences our ANs in different ways but after you've read 100 you'll find that one or more of your symptoms are regularly experienced by others.

I googled Kaiser acoustic neuroma and found nothing to indicate that Kaiser has any real experts in ANs so you would be wise to seek a consultation with AN experts outside Kaiser if you have to. This is not something to leave to amateurs.

The ANA website lists AN specialists that have long been vetted by our members who used them:

https://www.anausa.org/resources/medical-resources

My tumor's name is ALF - Alien Life Form. 

You can read my story at the link below.

[ANGuy]

I explained this to the Dr. yesterday and she flat out told me that was not a symptom of AN.

l agree with her.  BTW, since you don't find her qualified, l agree that you should find another doctor, but just so you know, if she is an ear and neck surgeon, that is the type of surgeon that performs AN surgeries. 

You will find all kinds of opinions on here from members who attribute everything to their AN.  There are certain classic AN symptoms and then there are everything under the sun that people kfetch about and blame on their AN. 

You mentioned that the tumor is pressing on your brain.  Did the she tell you that?  If the tumor is impinging on your brain stem, it puts you in a different situation.  Usually, tumors your size do not press on the brain stem.

[MichaelNorCal]

Your symptoms are real and your doctor is an idiot.

Thanks arizonajack! That's what I needed to hear. I appreciate your support and positivity.

[MichaelNorCal]

I googled Kaiser acoustic neuroma and found nothing to indicate that Kaiser has any real experts in ANs so you would be wise to seek a consultation with AN experts outside Kaiser if you have to. This is not something to leave to amateurs.

I've read a lot about Dr. Cueva and Dr. Mastrodimas who are a team that works in San Diego Kaiser. I see nothing but glowing reports about them. There's a lot about them in the forums. I searched "Kaiser California"

First, I have to consult with Kaiser's neurosurgeons in Redwood City, then I can schedule an appointment with the Dr.s in San Diego.

Fingers crossed!

[MichaelNorCal]

You will find all kinds of opinions on here from members who attribute everything to their AN.  There are certain classic AN symptoms and then there are everything under the sun that people kfetch about and blame on their AN. 

You mentioned that the tumor is pressing on your brain.  Did the she tell you that?  If the tumor is impinging on your brain stem, it puts you in a different situation.  Usually, tumors your size do not press on the brain stem.

Not sure where to begin ANGuy. Maybe what you refer to as "kfetching" are legitimate concerns about serious issues.

I don't have to be a Dr. to see the effect of the walnut sized tumor on the right hemisphere of my brain in the MRI. It is definitely pressing on my brain and making a serious indentation.

The sudden onset of vertigo, pressure in my head, tinnitus, ear aches, cold/numb face, and brain-fog are all effects of the AN. But, the cognitive difficulties aren't? Sorry, I disagree.

And I would definitely prefer to have a neurosurgeon operate on me than an ear and neck specialist.

Thanks for your input. I appreciate you taking the time to reply.

[ANGuy]

You will find all kinds of opinions on here from members who attribute everything to their AN.  There are certain classic AN symptoms and then there are everything under the sun that people kfetch about and blame on their AN. 

You mentioned that the tumor is pressing on your brain.  Did the she tell you that?  If the tumor is impinging on your brain stem, it puts you in a different situation.  Usually, tumors your size do not press on the brain stem.

And I would definitely prefer to have a neurosurgeon operate on me than an ear and neck specialist.

Thanks for your input. I appreciate you taking the time to reply.

Dr. Cueva is an "ear and neck" (head and neck) surgeon, so you might want to explain to him that he is not the type of Dr. that treats AN's when you get in contact with him.

Sarcasm aside, you would benefit from listening to the people who are working on your behalf, like the head and neck surgeon you saw, who does specialize in surgery of the type you are considering.  They have hundreds of thousands of Dollars worth of training and they can tell you things like whether your tumor is impinging on your brain stem and yes, it does matter when it comes to treatment choices.

The way this works is this, a neurotologist (head and neck surgeon) is the person who will open you up and close you up during surgery.  The neurosurgeon is the one who removes the tumor once the head and neck person gets in there.  There may be exceptions to this, but this is the way it is almost always done because the head and neck people are the ones who know best how to do that part.

As for the one you already saw, she could be great, or mediocre, and if you simply don't have confidence in her, then yes get another one.  The first ENT I went to, I liked, but he referred me to someone more specialized.  That guy knew what he was doing, but the profanity filter will block my posting of my opinion of him, so I went to another guy who I like and is highly regarded.

If your tumor is pressing on your brain stem, then you probably are not a candidate for radiation or for prolonged watching and waiting.  If it is not pressing on your brain stem, then you probably ARE a good candidate for radiation or WW.

[MichaelNorCal]

Wow! Did not expect a sarcastic bully in this forum.

If this is how you treat folks who are newly diagnosed and trying to figure things out...

Please stay off my threads unless you can leave the sarcasm at home.

[Greece Lover]

For what it's worth, my doctor told me that "ghost" symptoms can be very common for people once they know there is a tumor in their head. I dealt with some of this, especially before surgery. On the other hand the doctors don't know what it's like, and when you're dealing with nerves and neurons it seems to me it would be hard for them to be definitive about what is and what is not a symptom.

Good luck. The best thing you can do right now is find a great doctor who deals with a lot of AN.  How is your hearing?

[MichaelNorCal]

Hi GL,

I went in for an audio test and actually don't have any hearing loss (aside from the 4k loss from being a rock'n'roll stagehand in my twenties ;-)

I don't think it's a ghost symptom. The cognitive challenges were actually present before I ever knew anything about the lovely world of AN. In fact, that was what led me to talk to my GP in the first place and try to figure out why I had the symptoms.

I am on the hunt for the best Dr. that Kaiser can offer. Thanks for your kind support.

[Janey]

From the year before and the two years since I was diagnosed, I have, on occasion, experienced every one of those symptoms except the cold face.  I've joked with my friends and told them my IQ has dropped 20 points - only it's probably not a joke!!!!  In addition, I've experienced profound
hearing loss and stressful tinnitus.  Our brains are in overdrive working to overcome balance
and hearing issues, aggravating tinnitus, and a multitude of other problems that result from the AN
and/or it's treatment.  They can make us exhausted - and sometimes depressed.   Because you
probably don't LOOK like you have a medical problem, your friends and family may not "get it."
But we on the forum "get it", and this is where I've gleaned nearly all of my knowledge about our
condition.  One perk (among many) of sharing our experiences is that it helps relieve anxiety
when you begin to understand why you are having a particular symptom, what you may expect on
this journey, and when you just need a bit of compassion - it's here.   God Speed to you!

[MichaelNorCal]

Thank you Janey. I really appreciate your kind and compassionate reply. 

It's helpful to hear that someone else has had the same symptoms as me. The cold face thing is weird. It feels like I've been facing into a cold wind all day, even if I haven't left the house.

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.

For the most part, everyone here has been incredibly compassionate and kind. Hopefully the one exception was just a difference in communication style. I'm trying to not take it personally. My diagnosis was just a few days ago, so admittedly I might be a bit tender.

Take care, and thanks again for your reply.

[Jet747]

MichaelNorCal,

Sorry your joining "the club."

I can relate to most of the symptoms you describe.

I don't recall having a cold face but when I was diagnosed in May 2015 the Dr. did a pen test and I realized the left side of my face was relatively numb when compared to the right side.

The other thing I can definitely relate to is the feeling of exhaustion.  I could sleep 12 hours then need a 4 hour nap in the middle of the day just to get through the day.

My main issue though was balance.  I couldn't walk a straight line to save my life!  And worse yet, I would fall to the ground without warning and had no ability to prepare and brace for the fall (which is why we requested the MRI).

After treatment I now sleep around 6 hours, never need a nap and I really don't notice any facial discrepancies specific to sensitivity of touch nor temperature.

Unfortunately, I don't have anything to offer on your cognitive concerns but there is an entire section of this forum dedicated to members who might be able to offer advice/insight.

I do wish you the best as you choose the treatment course that facilitates the best outcome!

Regards,
Jet

http://www.anausa.org/smf/index.php?board=3.0

[rupert]

You mentioned that the tumor is pressing on your brain.  Did the she tell you that?  If the tumor is impinging on your brain stem, it puts you in a different situation.  Usually, tumors your size do not press on the brain stem.

Most tumors of this size are pressing on the brain stem so this statement s not accurate. 

[rupert]

[/quote]


If your tumor is pressing on your brain stem, then you probably are not a candidate for radiation or for prolonged watching and waiting.  If it is not pressing on your brain stem, then you probably ARE a good candidate for radiation or WW.
[/quote]

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.