Vagal Schwannoma
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2 days in a row I write on here, I'm feeling generous! :)

10/6/2011

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  So today, my nerves are totally acting up. Geezzz. Driving down to Niagara Falls and it is a 3 1/2 hour trip. I was alone in the car. Actually, go back to 3 am when I could not sleep and my throat felt it was closing up a bit when I was laying back down. It reacts in such a way that when I attempt to swallow saliva, it just doesnt work. No muscles work at all for a couple of tries. A bit... panicky feeling because there is nothing going in or out either. Anyway, back to this a.m. when I woke up and was getting ready to go to Niagara. Still had a weird feeling going on in my throat. Tightness and my head and skull doing that weird numb/tingley thing. My ear full and ringing, then muffled, on and off. Start my drive, and my throat starts closing up. Just enough to cause a bit of a laboured feeling when trying to breath. You could hear the air trying to get in. Enough to make my face, neck and chest red. This kept up for a good 3 hours. Made both my ears throb and muffle. Even thought of walking into a medical walk in clinic but really???? What would I say and how could they help me anyway. Just something I have to get used to.
I know many things, I have a wonderful family. My family is healthy. I am healthy otherwise :) God gave us the ingenious mind to develop wine out of grapes!!! For all these things, I am happy and grateful!!!! xo
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WoW, 4 months since last post

10/6/2011

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Wowsers, can't believe how time flies!  It has been so long since my last post.  My hair is a little longer.  I have been growing my hair since I had those bald spots from the radiation.  Started with trying to cover over the bald areas with longer hair and clipping it back over them to cover them.  lol  Now, it's gotten long enough that I don't want to cut it.  It has grown to be quite wavey and curley.  Longest I have had since I was 12 yrs old.  Ok, enough about the hair. 
What else is new.... Autumn is here, and it is the most beaurtiful time of the year.  Especially in cottage country where the trees line the lakes with so many different colours.  The pickeral are biting and so are the muskie.  Beautiful!  :)
I can't tell you enough how much CK has been one of the best decisions I have ever made.  The more I read and learn about the different methods to treat the vagal schwammy, the more I feel I did the right thing.  No one ever really knows of course until it's done.  Even then, there are the future results and complications to deal with.  But, so far so good.  I have an appt in Dec but I think I have to cancel that because I will be away on a trip.  Reschedule until January.  It is such a long drive for an MRI and the results.  But I also know it is with the best and most knowledgable so worth the drive.  3 1/2 hours... yeah.  :)
Everything has been going very well.  I do get my up and down days.  My voice is still a little raspy and some days when I over use it (which is all the time), it is down right hoarse.  I have lately encountered pins/needles and numbness on the side of the tumour from my skull down to my shoulder.  Also a high pitch ringing in my ear as well.  Have been reading about it and it is a trimignal nerve thing.  Better than the head shocks that come with it sometimes!  :)
Other than that, I am pretty symptom free.  :)  So far.... :p
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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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