More and more people are joining the facebook site for schwannomas of the head and neck.  It used to be for schwannomas of the vagus nerve.  I changed that since doctors usually do not have a 100% diagnosis, I want everyone to feel welcome where ever your tumour is.
Seems that surgery is the go to treatment.  Reconsider and join the facebook site before you decide on any one treatment.  :)  There are 192 of us on there that have been through what you are going through who have had surgery, radiation, herbal or watch and wait.  Talk to our support group before you decide on any one treatment. :)

Oh,,, and by the way.  2 1/2 weeks until the big day.  People keep telling me I am so lucky to be marrying Naz.  Makes me smile every day when I hear that.  I know I am lucky.  But if he is around, I roll my eyes as if to say,, whatever! lol 
To be honest.... He has been my rock.  Even after everything we have been through with my tumour and I will say, he has experienced everything as well.  He has not left me alone once.  Naz has attended every doctor appt.  Stayed with me during my radiation.  Goes to bed massaging my neck and head to alleviate the pressure.  Emails me every single morning when he gets to work... in appreciation of our previous day and what it meant to him.   I have 8 yrs of morning emails.... of encouragement and compliments.
So here's the thing.  When people tell me how lucky I am,, I know this.  Marrying him is not about keeping him around.  He's here to stay anyway.  It's about solidifying our family.  My 3 boys and his two girls.  Us as step parents.  Creating a husband and a wife with step kids team.  So when people keep asking me why I am getting married now, after 8 yrs.  It is because I have always wanted to be married to him.  When people ask why we are not engaged first.  Why waste the money of an engagement when in reality, we have been engaged for 8 yrs.  I knew 8 yrs ago we would one day be married...... the day is 2 1/2 weeks away. xo

Been a very fun night with friends singing karaoke and playing darts.  We share our songs we enjoy and why we enjoy them.  Our stories start from the 50's all the way up to the mid 70's depending on who is telling the story.  
It is a great time we have with our friends and it also allows me time to reflect on the past 5 yrs.  The songs each year that meant something to me for what ever reason all come back to make me laugh, remember or cry.  
Everyone has their turn to request a song and my man can bring any song up for karaoke with lyrics using youtube which then goes thru our stereo system with mics ect..... lots of fun!
I am so tired right now my eyes are closed as I type this... time for bed.  
Thank u for returning and reading my life and experiences.  If you are a first timer,,, beware lol
It's all about living life to the fullest, loving life to the fullest and being thankful you take a breath of fresh air every day. xo

It was a just over a month ago that I was having dizziness and pain.  Kinda funny how when it stops, you don't notice it is gone.  Not until you ponder some days and think,,, wow, I'm feeling pretty good!
So glad that is where I'm at today :)

Oh, and by the way.... guess who's getting married!!

Yup, me!  I love the fact he is going to marry me after being together for 8 yrs. 

When I was first diagnosed 5 yrs ago, I sat him down and said "when we met, you didn't foresee this as much as I didn't.  I don't want you to think you have to stay with me.  I am giving you every opportunity to move forward and find someone else."... he let me know we were in this together and he has proven himself right!  He has attended every doctor appt and radiation therapy I have been to. 

He massages my neck up into my jaw area when I have throbbing pain.  I firmly believe that without my guy, I would not be where I am right now.  He has been my rock.  I am very fortunate to have him in my life and now we are sealing the deal. 

Since I had my first symptoms on APRIL 12th 2009 which sent me to the hospital for my very uphill battle for a diagnosis, I am calling April 12th of every year, NATIONAL SCHWANNOMA DAY!
Hug someone who needs it, ask them about their tumour even tho they look ok, it's what is going on inside that needs the hugs.  Embrace all those around you who are supporters for you.  
Remember, April 12th,, National Schwannoma Day! xo

This week, I have been so busy with work. Over loaded. My body feels it. Beginning of the week I had pain in the area of the tumour. A full feeling along with clenching pain. That disappeared and I was happy but that was very short lived.
It has now been replaced with the infamous dizzy vertigo when I get up from a laying position or from a bent down position. The feeling of actually being thrust to one side because my entire vision and brain are being spun that way. Giving me a feeling of nausea.
It is so true when I say we are all in this world of schwammy-ville on a lifetime membership.

I would like to mention something that most of us take for granted or that we don't even know goes on. The volunteers who drive people to and from their cancer treatments here in Ontario. Sure they get a bit of pay back for their mileage, but that is it. The back and forth time they spend driving people in our communities is priceless and out of their own time away from their own families. 
Thank you to the volunteers in our community, some whom I know because I groom their dogs. For driving in the snow. For driving to Toronto, Belleville, Ottawa... to support those who have no ride for their treatments. Waiting hours until their rider is ready to go home.
Nothing is more of a reality check, then sitting in a cancer clinic with others having handkerchiefs on their heads, oxygen tanks, ect.. young and old. 
These volunteers are there for all of them who need it.
Some of these special people offered to drive me to my Toronto/Ottawa appts on their own time and expense, anytime I needed.  My heart is full because of their caring.
THANK YOU!!! xoxoxoxxoooxoxoxoxo

After seeing many outcomes of surgery.  I would like to personally state that there is one doctor I would start with or end with in the USA.  
Dr. James Netterville from Nashville, Tennessee. Vanderbilt University Medical Center.  
http://www.vicc.org/dd/display.php?person=james.netterville
Dr. James Netterville has demonstrated time and again, positive outcomes from surgery as he uses the I.E. method as explained: (here http://www.vagalschwannoma.com/newer-info.html)
I know I have a "Looking for a Doctor" list, and that is for everyone to share their doctors and for newbies to find a doctor.  I keep most information on this website non-judgmental, however, in my own diary here, I can say as I please :)
An added benefit of going to see Dr. Netterville is he lives in Nashville Tenn, and what better excuse to go see guys in cowboy hats... singing country even!  If you're a guy going to see Dr. Netterville, bring your wife/girlfriend along so they can enjoy the "scenery". :)
I am sharing this today as another success story has been shared with me regarding Dr. James Netterville. If you are a newbie, check out the "looking for a doctor" list and find one near you.  

Pretty sick of the snow.  Seems there is no end to our white misery.  On the other hand...
Yesterday was a pretty beautiful day considering it was only 3 'C  (37.4 F for my American friends). 
Naz and I sat on the deck for 3 hours with snow all around us, drinking and enjoying the sunshine! 
It's about appreciating what we have when we get it.
I have heard from 3 more people who have found schwammie-ville.  It is great to be able to be here for those who are new in town :P  
Knowing they are not alone is their first relief.  
Today I heard the best story I have heard in a long time.  A woman who was told to watch and wait.  I love to see doctors not jump into the surgical resection mode the minute they find a schwannoma.  
If you are newly diagnosed, take your time and read as much as you can.  Put a hold on any treatments until you have all the facts.  It is not life threatening and you are not going to die.  There are doctors out there who specialize in schwannomas.  

Great news!!!  The tumour has shrunk even more :)  Seems it is half its size from 3 yrs ago when I first had radiation.  It was 7.1 cm X 4.1 cm then... now it is 3.6 cm X 1.5 cm.  :)
How can anyone say that radiation is not the best option to take?  My motto has always been "quality of life over quantity of life!"
People get a brain tumour and immediately think.. GOTTA HAVE THIS THING OUT.  Trust me, I felt that too.  I wanted to cut it out myself.  I would look in the mirror and only see ugly.  I would see the reflection being one of a distorted face with a monster on one side.  Once I realized the morbidity of nerve function from surgery, I knew I would not choose that.  Yes there is a chance the tumour could turn malignant over time, but as I say, "Quality of life over Quantity" :)  Plus, you have a better chance dying in a car crash then it turning malignant,,, do you never drive because you may crash???  Think about it.
If your doctor says your tumour is too big to do radiation with cyberknife then show him the two MRI reports below and tell him/her to think again. 
MRI result from 2014 below:

Compare those results to my MRI (shown below) from 3 yrs ago in 2010 before radiation :)

The good news is: there are new members joining every week to the facebook site for head and neck schwannomas.  
Bad news is: there are new members joining every week to the facebook site for head and neck schwannomas.

Get what I mean?  It's good they found us but it is bad they have one in the first place.  But what better place to be but in Schwammie-Ville on facebook!  Great bunch of members who have been thru it, going thru it, starting it or are there as supporters.

I am thankful for this community and know that since this is a life long journey we will always have one another.  No one can know what we are speaking of without experiencing it.  Even our own doctors tell us these symptoms are not related but,,, when we put all our symptoms together, we are all one of the same.  

Right now the surgery vs. cyberknife debate is going.  My personal opinion is that most doctors are so un-informed regarding either treatment.  If you are a doctor reading this post (prolly not lol) then please have the guts to admit you may not know everything and seek all the options there are available for your patient.  Seek doctors who have much experience with this and ask questions, offer referrals if you are new to it.  Email me privately and I can give you doctors names who are well experienced with vagal schwannomas.  Just sayin... :)