Vagal Schwannoma
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3 months post radiation

2/28/2011

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Three months ago.  Can't believe it has already been 3 months.  I have another 3 months to go until my first MRI.  That is all I can think about until I actually get the MRI.  I want to know what's going on in my head.  I have had on and off symptoms some of which are very painful and some just a constant irritation.  It would certainly be nice to know someone else right now who has had Cyber Knife Ratiation recently so that we could compare notes. 
Definately I have gotten some of the previous symptoms back that were present before the C.K.  Who knows why but as I have mentioned before, I know there will be certain obsticals and stages of recovery that I will experience throughout the next year for sure.
I have been keeping myself busy with life.  Work, family, friends... no down time.  :)  Keeps my mind occupied!  :)
Beginn
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Feeling better by last night

2/19/2011

3 Comments

 
The pain has passed.  Just some pressure and muffling is left.  Slight pinging in my ear still. 
I will admit, tomorrow I will feel much worse.  Tonight is "Whitehouse" night and a van load of us are going.  I already know I will not be feeling well tomorrow. lol
Picked up our car yesterday.  Mazda 3.  Woo hoooo!  Looks and drives sweet. 
I am very bothered by one thing.  There are very sweet people who I have met through these pages.  Some are in the process of getting surgery on their V.S.  I am not sure it is the right thing.  All I can do is support and share my own experience.  I am not sure why doctors are so fast at removing these tumours if the patient is still ok.  Blows me away.  For a doctor to sit and say "when you awake after surgery, you will not be able to talk, you will be on a feeding tube to eat, you will not be able to swallow, ect ect... ".. seriously????  Sign me up?????  But some people do.  I would not budge until I knew for sure I was on my last leg to have anything ripped out of me.  I know some people just like the idea of a tumour being taken out of their bodies.  Trust me, when I first found out about it.  I wanted it out.  I imagined it as a big, ugly tumour actually on the outside of my head.  I understand the need to want it out.  I also understand quality of life is very important.  If it is necessary to have it out,, go for it.  If it is not, then i'd say, keep it and treat it differently.  I'm not a doctor tho.  (No duh!!!) 
I do support what anyone wants to do tho, cause there is no saying that the decision I chose is the right one either.  It's a matter of belief. 
I'll have a dance for ya all tonight!!!!!! 

3 Comments

Yesterday was a not so great day

2/16/2011

1 Comment

 
Can't all be good I know.  But the side my tumour is on is very sore and tender yesterday and progressed through the day, all night and into this morning.  I was hoping it was a temporary thing.  Feels swollen in there as I feel it when I swallow and my ear is pinging with pain inside and behind it.  My neck and head are tender all on that side.
I know there will up and down days, and this is a down.  Not bad really since the first initial pain was at the beginning and then nothing till now. 
I'll see if I can come up with info on the internet regarding post-CK symptoms and when they occur.  I do know things can occur at various stages, just don't remember when or anything.  I am not even sure now that what I read was regarding CK radiation or not either.
I am sort of aware that CK has been used many many times on different tumours and cancers but a vagal schwannoma is more rare.  I would venture to say it has been used on prolly 25-30 patients only through out the world.  Give or take 10 patients.  That is not alot of people to gain statistics and symptoms from.  However, at least it's something and I happen to know two of them through facebook so will ask them questions.
Come to think of it, this site is really the only site geared towards vagal schwannomas.  This held true at least 1 1/2 yrs ago when I first made it.  Who knows now, but there was a huge lack of info for vagal schwannomas, their symptoms and support.  The facebook page I have made has brought a bunch of us together and it is a god send for lots of the newbies as it was for me when I first encountered others with a V.S.
Back to this pain... Sometimes tho, once you're out of the woods, it's hard to remember back to when you didn't feel good. All that is on your mind is your present state and how good you feel now.  So asking others about thier recovery may not trigger these memories unless they wrote them down.  Even when I read back on my diary's I think, WoW, I forgot about this and that.  I did have an entire years diary on here before the CK, but I copied it onto a Word document and erased it from here.  Decided to start right from the beginning of my treatment.
Well, my present state is... I feel awful.  :P
It is hump week tho so let's get at it and finish off this week quickly!!!
Have a great one :)
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I miss American Channels

2/9/2011

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I really miss having American Channels during Super Bowl.  Seriously, the commercials we encountered on our station were lame to say the least.
I still have to get online here and check out the commercials I missed.  I LOVE the Clydsdale Horse ones. 
To keep my progress update going here, I'm still feeling great.  My voice still gets hoarse now but only when I over use it... like at the superbowl party.  Once I rest it, it gets back to normal. 
Another "What does Rhonda Watch???" moment is the "Luke Gambles Vet Adventures" show on tv.  Love it!!!  It's an Aussie guy who travels the world to remote areas and performs medical interventions on the animals with only what is available to him.  He is cute, personable and knowledgable.  Worth the watch.
Naz's car died so we need to purchase another car.  Anyone out there have a car they're not using ???  lol  :p Just want to give it away???  har har
Out car shopping this week.... 
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Feeling Great!

2/4/2011

2 Comments

 
I must say, "I am feeling great!" lately.  I still feel that CyberKnife Surgery (actually radiation) has been my best form of treatment.  The only treatment available for my situation so Thank God it became available in Ontario here.
On my way to Niagara tomorrow so I'm pretty sure I'm going to be beat by the time tomorrow night comes and I'm back up in Caygeon.   I have not been sleeping well lately, not sure exactly why but I'm PRETTY sure it's because Naz has restless leg syndrome (he has NO clue) and kicks me awake for hours on end.  Maybe he DOES know he's kicking me.  haha
Anyway, it occurs about every 15 seconds and annoys the heck outta me cause every 15 seconds, Boom, another spasm of his leg/arm.  Just as I think I'm getting to sleep, BAM, again, and again and again.  Is it REALLY illegal to drug someone up before they fall asleep?  JOKING!!!!!!! 
Anyway, I'm going to try to get back to sleep and see if Naz's legs and arms are sleeping too by now.  Night night.
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Been a while...

2/1/2011

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I know it's been a while since my last post (10 days to be exact), but not much new has happened.  American Idol has started and I love that show!  Ok Ok, I love the new judges is what it really is.  Started playing Euchre Tuesday nights at a club and I love that too.  I'm not the best at playing only because I must ask what "trump card" is at least 3 times each hand. lol  I play any game for the moment, there is no strategy with me.  I could not tell you what the card was the play before.  My memory is really bad and trust me it is getting worse. 
I can't even really remember if I already wrote about me leaving my grocery cart in the parking lot at the grocery store.  FULL!  I got home and realized I had no groceries and had to drive back for them.  The attendants put it back in the store for me.  I had left it at the back of my vehicle.  Had I backed out, I would have run it over but I pulled forward out of the parking spot.
If I look down at my gas gauge and I need gas, I MUST log that into my calendar reminder setting on my blackberry or I will forget.  Like the time I needed gas, drove all the way to the bank to get money for gas, then drove all the way back home, Without getting the gas that I drove to the bank to get the money for!!!  Duh!
Anyway, that's another crazy part of my life I deal with all the time.  I'll share story after story and at one point one of you will say,, "Have you thought about alzheimers?".. lol
Anyway, I'm feeling punkish lately, but so is everyone else.  Just totally exhausted.  I need to get my hair re-coloured but am afraid to as thinking it may irritate the roots of my hair.  Don't need anymore hair falling out. 
2 more people have joined my facebook vagal schwannoma group with V.S.'s and questions and their own stories to share.  We can all learn from eachother.  That is a great thing! 
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    Author

    Hi, My name is Rhonda Edwards.  I was diagnosed with an in-operable brain tumour in 2009.  I will blog my journey so follow along and enjoy, share and learn. 
    Below is a pic of my guy (Naz) and me.  Giving credit where credit is due as he carries all my burdens and is my rock!

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    Needed some humour here! 

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