Author Topic: A follow up and advice for newbies.  (Read 2306 times)

arianhrod333

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A follow up and advice for newbies.
« on: July 19, 2010, 06:55:04 am »
I originally joined becaue my ENT thought I might have an AN. Its always disturbing when someone tells you there might be a tumor in your ear, go home and wait. At the time I didn'thave insurance and wasn't sure what to do. Thie resources on here helped me find a way. After it was discovered that I didn't have an AN my ENT told me to go home, the hearing and balance issues would probably go away and, if not, I could always come back. Jerk. Lol. Several bouts of vertigo, a few falls, shin pain and several tests later, I'd had enough. I sucked it up, signed up for insurance I really can't afford, and now have a doctor with 30 yrs of experience behind him. They tested my balance with the ENG (failed miserably) and was able to diagnose me with BPPV. So how does this help those of you with possible AN's? I've learned that with patience, a loud demanding voice, and following your gut instinct you can get answers. I've also learned that digging in and facing the possibilites is far less scarier than not knowing. If you have an AN and have found this group know that you have a family in these ppl. No worries, just lots of faith.  :)

Jim Scott

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Re: A follow up and advice for newbies.
« Reply #1 on: July 19, 2010, 12:11:34 pm »
arianhrod333 ~

Although I'm sorry to learn about your BPPV (Benign Paroxysmal Positional Vertigo...try saying that 3 times, quickly) I'm relieved that you don't have an acoustic neuroma.  The ENT was clueless and, apparently, a bit insensitive to your problem.  However, I'm delighted that you were able to access medical insurance and, eventually, find a good doctor that was able to offer you a diagnosis.  Your advice for 'newbies' is apt and appreciated.  We thank you for your contributions to these forums.  Stay well.

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.

suboo73

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Re: A follow up and advice for newbies.
« Reply #2 on: July 20, 2010, 05:01:48 am »
Hi arianhrod333!

Well, it sounds like your ENT must be related to the first two i saw!  ;D

Anyway, it was really great that you posted your experiences so other newbies can learn faster and skip the endless waiting game.
[Been there, done that!]

I believe that knowledge is power, so i am glad you are getting to the root of your own problems with BPPV.
Best wishes that you can get some help and learn what you can do for this condition.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Captain Deb

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Re: A follow up and advice for newbies.
« Reply #3 on: July 24, 2010, 07:59:09 pm »
Just wondering if you've had a contrast MRI, which is the only definitive way to rule out an AN.

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

SML

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Re: A follow up and advice for newbies.
« Reply #4 on: July 31, 2010, 10:10:43 am »
Thank you arianhrod333 for posting this thread. Because of you I was able to diagnose what was going on with me (BPPV) very quickly.

My husband Rich had just read this thread while researching for his “this week” update and after finding out a little more about BPPV, realized the symptoms for Benign Paroxysmal Positional Vertigo were exactly the same symptoms I was complaining about.

Because of you I was able to keep a cool head and not panic.

My doctor just confirmed I have BPPV and I am using the Elpey maneuver to try to move those crystals.

Information is a powerful thing! Thanks again!
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.