Author Topic: 14th annual MRI --Good News?!  (Read 6048 times)

marie

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14th annual MRI --Good News?!
« on: October 15, 2007, 07:50:39 pm »
I have been in watch and wait mode since 1993.  Had my most recent MRI last Friday.  This morning found a message from my ENT (who ordered it) that it was still there but no bigger.  I hope Dr. Brackmann agrees and doesn't find anything strange going on in there.  I discovered something on Friday that comes under the catagory of "Should have known better!".  My MRI appointment was for 9 AM.  When they tried to inject the contrast, the veins kept collapsing.  The told me to "go home and  drink a LOT of water and come back at 2 o'clock".  I did, and there was no problem.  I wasted the whole day because I forgot to drink enough water! 
My hearing test was also unchanged from last year.  I still retain 80% hearing.  That's really good news because I'm NF2 and have already lost the left side.
Marie
surgeries : back of head 1967,1987
               translab 1991
               bone reduction 2002
               7/12  1968
               temporalis transplant  1969

jerseygirl

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Re: 14th annual MRI --Good News?!
« Reply #1 on: October 15, 2007, 09:19:52 pm »
Marie,

That is great news! Congrats!

             Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Jackie

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Re: 14th annual MRI --Good News?!
« Reply #2 on: October 15, 2007, 11:40:44 pm »
Oh Marie,

That is wonderful news! No change, wow, how beautiful that sounds to "us wait and watchers"!!! May you continue to get great news! Bless you and all of you in the AN world!

Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Brendalu

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Re: 14th annual MRI --Good News?!
« Reply #3 on: October 16, 2007, 04:36:06 am »
Marie!

Awesome news!!!  Fourteen years and counting, you are doing great.  I'd say you made the right choice to be a wait and watcher.

Congrats!!!!

Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Sheryl

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Re: 14th annual MRI --Good News?!
« Reply #4 on: October 16, 2007, 01:10:28 pm »
Hey Marie - how wonderful!!  So sorry about the veins - I have terrible ones too.  I always dread having to have blood taken or the I.V. for the contrast dye.  Yes, drinking water is a great hint except make sure you empty your bladder before getting on the table for the MRI - LOL.  My veins are so bad that when I needed chemotherapy for breast cancer, they put a port in my chest wall.  That wasn't fun but boy oh boy whenever I had my chemo treatment or they needed to draw blood, it was so easy!!  I hate when they tell me "your veins are so small" - my answer, "that's the only part of my body that is small".  Or, they go into detail how the veins are slipping, sliding, and wobbling away from the needle - hey, just do the job with no commentary!! 
Anyway, enough vein stories - keep up the good reports.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

antoinette

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Re: 14th annual MRI --Good News?!
« Reply #5 on: October 21, 2007, 08:08:56 am »
Hello Marie.  (I love your name....)
I also am a W&W starting in 97 but should have started 7 years prior to this (if my doctors had been slightly awake) All my symptoms were so precise pointing to the diagnostic, I could have done it myself. I get an MRI every 2 years and perhaps it will become 3 years now, the AN being now free in the cerebellopontis, plenty of room to grow (either it is not filled with brain or mine is soft and considerate), but it apparently does not grow much. I am now at a 2cm.9 total size but my ENT prefer to consider only the part of it free out of the auditory canal, and this is now 9 millimetre to a round 1cm.
Symptoms have settle nicely when the pressure inside the IAC was relieved naturally. I am still vertigo and can go "timber" when moving or turning too fast. my left hearing is 90% dead but the faint hearing is enough to secure some balance. The stabbing pains still come back rarely though and it proves me only that it is not dying. But the nauseas are gone, my brain has compensated to fake stereo illusion, it frankly does not bother me that much and I tend to forget all about it.
I bet a lot of people do have an unknown AN and live with the symptoms just wondering if it is age, or heredity that creates this slight handicap. My mother for one, certainly had all the symptoms, and my 2 sisters had operations of the ear canal with complete removal of something that had no name at the time, possibly ANs.. (50 years ago and more for the older one).

But I did improve a bit on the W&W condition but correcting 2 very debilitating symptoms, the dry eyes and the slight weakness of the lips that I suffered in the 90s, making it difficult to drink cleanly and to smile.
The first one by using the "biofeedback" system to recall moisture and tears, the second with elocution exercises learned a long time ago in a drama course.It is all perfect now.

I am absolutely convinced that I will not have treatment of any kind now for my AN. I will explain another time though.
Keep well Marie, all my wishes.
antoinette

marie

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Re: 14th annual MRI --Good News?!
« Reply #6 on: October 22, 2007, 01:41:50 pm »
Dr. Brackmann e-mailed me that the tumor "is stable".  He said I had lost "a little hearing but speech discrimination was the same as last year".  He wants me to do it again in a year.

It's hard to believe that this much time has passed, but next month on the 24th it will be 40 years since my first diagnosis.  First surgery was December 14, 1967.  It has come back and been removed twice more (3 ANs).   Now I have this one on the right side and am following  it via watch and wait. 
I've noticed that I haven't felt like working on my rentals, leaving all the work to people I hire to make repairs, paint, etc.  I used to do a lot of that work myself.  After I received the news that the tumor hadn't grown, I realized that I wanted to do some of that work.  This weekend I did some painting and varnishing, some cleaning, some small amount of yark work (pulled some vines off  of the garage and the fence.  However, when I cleaned the ceiling fan blades, I got kind of "tippy" on the ladder and decided I'd better leave it to the cleaning crew.
Was I in a semi-depressed state for the last few years?

Antoinette (I like your name, too--thank you)--

I, too, think my mother had symptoms of AN.  My youngest sister has an adenoma on her pituitary gland and I wonder if that could be related to NF2?  Anybody know?

Marie










surgeries : back of head 1967,1987
               translab 1991
               bone reduction 2002
               7/12  1968
               temporalis transplant  1969

GM

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Re: 14th annual MRI --Good News?!
« Reply #7 on: October 24, 2007, 06:52:44 am »
Wow  that's great news...congrats!
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Jim Scott

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Re: 14th annual MRI --Good News?!
« Reply #8 on: November 12, 2007, 10:18:46 am »
Hi, Marie:

Please accept my congratulations on your 14th year of 'no growth' as you 'watch-and-wait'. 

Your experience really does validate the concept of watching and waiting to see if the AN grows, spontaneously shrinks or, as yours has, remains 'stable'.  Let me offer my sincere wishes for another year (or more) of 'no growth' as you continue to monitor your AN.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

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Re: 14th annual MRI --Good News?!
« Reply #9 on: November 12, 2007, 12:54:42 pm »
Marie,

Great news! Congrats to you!  Continued wishes for wellness and yeppers, drinking a lot of water definately helps the veins.  I'm like you and hate being used as a pin cushion.  :'(

Again, congrats! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

 


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