Author Topic: New  (Read 3909 times)

Polly

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New
« on: September 10, 2010, 08:59:48 am »
Very new to this group. 

Diagnosed with AN by ENT surgeon BUT will have MRI with contrast done Monday  (9/13/2010- hey, at least it's not Friday the 13th)  to confirm diagnosis so am in waiting pattern.  Seem to have most of the 'classic' symptoms but also nausea which I assume is caused at least in part by the balance issues.  Guess once I get the results on Wednesday the 15th I'll be back with lots of questions.

One question about the MRI - I've had them done before prior to spine surgery ... I have instrumentation in my neck and wonder if this will cause any problems with getting a clear result ( I shall certainly ask at the MRI facility) just curious if any others have the same issue.

Great to know there is a 'community' out there - the thought of a brain tumor is not pleasant even with the cheerful comments from the scheduler in the MD's office -  to the effect that 'that if one has to have a tumor this is the one to have...'


CHD63

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Re: New
« Reply #1 on: September 10, 2010, 09:34:05 am »
Hi Polly and welcome to our exclusive group ..... :D  Actually, we are not exclusive because we have a wide variety of medical issues that bind us together in this forum.  Therefore, even if it turns out you do not have an AN, you will be welcome here at any time.  You will find this a very caring, supportive group of new friends, who are very willing to share their personal experiences.

You are correct that nausea can definitely accompany the balance issues.

If your instrumentation is made of titanium, there should be no problem with the MRI.  An AN shows up much higher in the head than your neck so it should be able to be seen easily.  My AN came after I had had previous brain surgery, in which teflon pads were left at the brain stem (on purpose).  The first MRI I had following that surgery was a zoo.  At first they were refusing to do it at all.  Then, they agreed to do it if they had an operative report assuring them of the make-up of the pads.  Had to have the hospital fax a report, etc.  Finally all settled and on with the MRI.  All this is to say, if you have documentation of the make-up of your instrumentation, you might avoid any hassle.  Better yet, if you have any imaging films/CDs or reports of your neck, take it all with you to avoid any issues.

Best thoughts and ask away ...... that's what we're here for.  Be sure to let us know what you find out next week.

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

pjb

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Re: New
« Reply #2 on: September 10, 2010, 11:37:23 am »
Hi, welcome hoping maybe it is a mistake and you do not have an AN love your sense of humor with Friday the 13th... I love to approach everything with humor it keeps me sane and hoping I never lose it... I love that statement if this is the type to have we are lucky  !!!  Yes I know that and I am thankful but none the less it is a tumor in a complex area and hello my head is being opened so still not happy.... But they mean well and they do not realize sometimes it does not help...

Will be awaiting for a diagnosis and praying all will turn out well and we are here if you need us one way or another.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

leapyrtwins

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Re: New
« Reply #3 on: September 10, 2010, 11:46:12 am »
Hi Polly.  Welcome to the Forum  ;D

I agree with the staff at your doc's office - not to sound callous, but if you have to have a brain tumor this IS definitely the one to have.  99.9% of acoustic neuromas are benign and even though treatment (especially surgery) can be tough, chances are excellent that your life won't change that much.

I'm not sure what you mean by "instrumentation" but, like Clarice said, if your instrument is made of titanium you can have an MRI.

I have titanium in my head - result of both my AN surgery and my BAHA implant surgery - and it's not an issue.  Just be sure you tell the MRI tech that you have this instrumentation.  They like to know these things.

Good luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: New
« Reply #4 on: September 10, 2010, 03:46:06 pm »
Hello Polly - and welcome to the ANA discussion forums.

I believe your question regarding (what I assume is) the titanium in your neck area has been answered correctly, as I understand it.  The MRI scan will deliver a firm diagnosis of an acoustic neuroma, should one be present - but it may not be.  This happens, occasionally.  As Clarice ('CHD63') stated, even if you don't have an acoustic neuroma, you're welcome to ask questions, etc here...except that you'll have to pay a toll, first.   Kidding!   ;D  Good luck on Monday!

Jim
« Last Edit: September 14, 2010, 01:18:26 pm by Jim Scott »
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.

msuscottie

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Re: New
« Reply #5 on: September 14, 2010, 01:16:13 pm »
Hi Polly,

An unfortunate welcome to the group, but there are SOOOO many GREAT people here to ask questions of, vent with or just get a much needed laugh from. You've come to the right place. I had two surgeries and gamma knife radiation and some of the folks here got me through everything helping me know what to expect and so on. PLEASE feel free to send me or anyone else here a message or ask any questions if you have them.

Wishing the best for ya!