Author Topic: Our Moderator's Clarice's AN journey  (Read 3119 times)

MLB57

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Our Moderator's Clarice's AN journey
« on: June 25, 2016, 06:48:06 am »
;D  Good morning Clarice and everyone!

My ANA "Notes" News letter just arrived..and lo and behold I saw a familiar face!  Enjoyed reading the story of Moderator Clarice's AN journey!  Thanks for sharing!   :D

From my perspective, on this AN journey my challenges have changed over time.. AT 51 after surgery I felt I had more "explaining" to do regarding my crooked smile and hearing loss. I always had an nice smile (as I always was told).   But now because I am 67 I usually tell new people in my life I just have trouble hearing..and don't mention my crooked smile..  and much later I explain it all.. but as we know this is so rare some people just look with kinda a blank stare after you explain.. But I am used to that. TMI maybe?  LOL! ::)

I do most dislike the loss of directional hearing.. but people who know me understand that deficit I have.  ;)

Strangely what is most annoying sometime is that due to the retrosigmoid surgery, I have a"tight" neck muscle and sometimes it is so tight that it seems to interfere with my balance.  When it is tightest I tend to stumble more..  Fortunately I have few headaches.  8)

It all is what it is and I am thankful my brain tumor was not cancerous or I would have been gone 15 years ago..So life is good.  Everyone has issues to deal with.  I am fortunate I have no major health stuff to deal with. I will be glad, however when Dr Loeffler at Mass General finally tells me this will stay dormant.. No more MRIs.  ;D

Happy Summer everyone!  8)


Mary/AKA Grammy Mary
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

CHD63

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Re: Our Moderator's Clarice's AN journey
« Reply #1 on: June 25, 2016, 01:32:58 pm »
Hi Mary .....

Glad you enjoyed the article.   :-[  Each of us has a unique story to tell.  That is why it is so difficult to explain to the newly diagnosed that the decisions must be made by the patient, in consultation with the best medical AN experts they can find, and not by others.

I agree that the loss of directional hearing is annoying.  I do feel that my Ponto bone-anchored hearing device helps in that regard.  At least I can hear all of the sounds around me, I just do not very often know where they are coming from.  Ex.  Me: "Dear, where are you?" (when husband is in another room)  Husband: "Right here!"  Me: "Ahem!"  We usually laugh as it dawns on him that I have no idea where "right here" is.  If someone calls my name, I do the typical 360 to find out who is calling me.  ;D

For me the most troublesome is walking like a drunk all of the time.  Among friends it is no problem, but among strangers I feel myself needing to say something along the lines of "I really have had nothing to drink."

I still need to have at least one more MRI ..... not fun but reassuring to know that it is being monitored.

Happy Summer to you!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011