ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Sheryl on August 05, 2010, 06:13:58 pm
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I've been waiting and watching for almost nine years. I go to a neurologist every year and have an MRI yearly. From 11/2001 to 12/2009, I've had 5 mm of growth but in the past few months I felt symptoms have increased. My tumor is on the 9th cranial nerve as opposed to the acoustic (8th cranial nerve). If I didn't know it was there, I would think nothing of these symptoms - some of which include the "wonky" feeling, pressure in my head (sometimes upon changing position), tinnitus on that side, clicking noise in my ear, and occasional jaw and ear pain. The symptoms of a 9th nerve tumor aren't showing up - swallowing and gag reflex problems.
Recently while up north for the summer, I decided to consult with a specialist in Boston for brain stem tumors. He was great - took the time and was very knowledgeable. He felt by looking at my last MRI and examining me that the symptoms could be due to the tumor or jaw or TMJ, but if they were not disabling to me, he would still recommend wait and watch. It is just about touching the brain stem but no swelling or pressure around it.
So I will continue until next MRI (12/2010) and hope the measurements are still the same. Meanwhile I've seen a dentist who couldn't definitely diagnosis bite or TMJ problems but did recommend a $400. night/bite guard!! Think I'll check out the over-the-counter ones you can mold yourself.
Sheryl
P.S. to Derek - I'm still in the running!!
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Hiya Sheryl...
Good to hear from you and best of luck with your MRI scan in December when hopefully you will be 'full steam ahead' into your 10th year in W & W...I'm still right behind you and hoping to also celebrate getting into double figures.
Hope you get sorted re the jaw / ear pain etc. I wouldn't be overly concerned if the tumour were to touch the brain stem as that has been my situation since diagnosis!
Derek
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Hi, Sheryl ~
Thanks for the 9-year update. I trust that your upcoming MRI will remain relatively 'stable' and that you can achieve the coveted 10 year 'Watch-and-Wait' status.
Jim
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Hi Sheryl! Being somewhat in the same boat I can feel what your going thru. I`m sure I`ve had an AN long before I was diognosed over 3 years ago. My symptoms have actually improved except for the tinnitus which lets me know that something is not right on my AN side. In any case I`m hoping that your journey W+W stays stable and whatever the case good things come your way. I`m looking fowards to next week when I take my yearly. With a little luck maybe we can achieve what Derek has with a reduction someday? Lets keep that healthy lifestyle and hope for the best! Best wishes, Mickey
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Mickey - thanks for your good wishes and mine go out to you - keep us posted about your MRI next week.
Jim - thanks, too, for your note - always good to read your posts. Hope to make it some day to the N.E. Brunch - maybe this year ::)
Derek - Hope you keep watching my "backside" as we continue with W&W.
Sheryl
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Hello Sheryl,
Regarding the night guard, I have one due to sharp pains in my back tooth area same side as my AN. It has helped tremendously, no more pain, and I have been wearing it for a couple of years now. Through my dental plan it was like $125. far cry from $400! Anyway, it did stop the pain, though I was NOT diagnosed with TMJ or the like. Good luck on resolving that issue and may we all continue to not have growth and just Watch and Wait successfully.
Blessings to you and all our AN friends,
Jackie