Author Topic: 2MM AN is this for real?  (Read 7604 times)

grams 11

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Re: 2MM AN is this for real?
« Reply #15 on: May 31, 2007, 02:03:45 pm »
HI TO YOU ALL.AND SHE HAD NEVER HAD PATIENT WITH ONE BEFORE SO WASNT FAMILIAR WITH IT,      I JUST HAD MRI DONE ABOUT 3 WKS. AGO, HAVE TOTAL LOSS OF HEARING IN RIGHT EAR, DR, SAYS THE NEUROMA PRESSES ON THE NERVE ENDINGS AND DAMANGED THEM,  THE DR, TOLD ME I HAVE A NEUROMA , AND I HAVE TO GO TO SUNNY BROOK HOSP. NOT SURE WHAT TESTS I HAVE TO HAVE THERE, SOUNDS LIKES ITS SMALL AS MY FAMILY DR, TOLD ME TODAY, ITS ABOUT 4 MM.    ANY HELP IS APPRECIATED , IM NEW HERE ON THIS FORUMN  ,THANKS        JOAN

Hi Joan and welcome! I'm glad you found us and we are all here to help.  Did the dr state (from the MRI results) that it's an "acoustic" neuroma or a "facial" neuroma or what kind of neuroma?  If you have a copy of the written MRI report (suggestion would be to make sure you always have a copy of the written report and films as you may have to share them with other docs during your neuroma journey)., the report should note what kind.  Also, as Joe noted, where are you located?

We are here to help and yes, based on what you have shared thus far, your's is VERY small in comparison to many that participate on this website.  It sounds like you have time to really research things out.  The doctor may be sending you for tests, such as hearing test, another scan, etc. I'm really not sure, but please make sure you ask every single question you can.  During a neuroma journey, no question is stupid or out of line or ..... it is your (our) health and we ask all we can to make sure we are the best informed patients we can be.

      thanks for advice , yes its a acustic neuroma , pressing on nerves in 8th ventricle   .  ill keep in touch .  i dont understand much about this as of yet , untill i see dr, in sept, for another hearing test ,and other test ,not sure what .            joan

cindysip

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Re: 2MM AN is this for real?
« Reply #16 on: June 07, 2007, 08:04:37 pm »
When my AN was discovered in Jan it was 2mm...so yes this is for real. My diagnosis came after symptoms of vertigo which was then followed by imbalance issues. That was the one time I wished I had failed a test (BPPV)...I also have tinnitus and mild hearing loss of high pitch sounds. From what I have read the little ones can cause symptoms...something to be thankful for.

Next week it's MRI take two. My first MRI was done is a small center. The doctor wants this one done in his hospital (NYU). In the past year I have had MRI'S for other reasons and I have definitely learned an important lesson. The larger hospitals have much better equipment and provide much more of an accurate diagnosis. Right now I am awaiting the diagnoses of three other tumors...sure wish I knew why I am growing these things  ??? The first MRI spotted only one of the three and ironically it was the smallest in size. My doctor supports the "wait & watch" mode. He told me that he had over 40 patients waiting...and he'd operated on 4 that very week.


Cindy
Diagnosed 1/07 2mm AN - symptoms included spinning sensations when awakening, balance problems & mild hearing loss
6/07 - followup MRI no growth
6/08 - no growth, hearing unchanged

Dana

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Re: 2MM AN is this for real?
« Reply #17 on: July 04, 2007, 04:06:25 pm »
Ditto on what Phyl said to AT LEAST get a photocopy of the radiologist's MRI report every time, and it's really best to get copies of the most important films.  What I learned was that one can get a CD that has all the films and the software program that lets you explore them.

The CD makes it easier to transport.  I think any neurosurgical facility can copy them into their own computer system, and give the CD back to you.  The MRI folks charged me $12 to make the CD.

I've just started to explore the films, and of course not too much is clear to me.... neither in the films I've been able to access nor how to navigate the software itself to SEE the films!  But I'm getting there.

Does anyone know; do the films come out "flipped" sideways -- that is, an AN on the right would appear to be on the left?

Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

 


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