Author Topic: Not Diagnosed yet but searching for answers...  (Read 26549 times)

leapyrtwins

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Re: Not Diagnosed yet but searching for answers...
« Reply #15 on: May 16, 2010, 08:36:30 am »
Real quick, a couple people have replied implying that there could be many reasons for the symptoms I'm having.

Would you mind elaborating?

I'm not a doctor, so I won't even attempt to say what else your symptoms could be.  I just know from being on the Forum for a few years now that we typically have people who think they have an AN because of similar symptoms and then their MRI shows that they don't.  While having an AN isn't the end of the world, I honestly hope you are one of the people who don't have one.

Good luck on Tuesday.  Please let us know what happens at your appointment.

Best,

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

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #16 on: May 17, 2010, 11:58:36 am »
I'm sorry. I'm sure it's extremely annoying that I'm here.

Obviously, I also hope that I don't have an AN or anything else wrong with me.


CHD63

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Re: Not Diagnosed yet but searching for answers...
« Reply #17 on: May 17, 2010, 12:22:31 pm »
Michelle .....

Please do not feel you are annoying.  This is a scary time for you and you have every right to be concerned until you are diagnosed.  As I said in a previous post, sometimes our minds play tricks on us when we panic.  For this reason, it is important that you try to remain as calm as possible until you have walked through the remaining pieces of the process of diagnosis.  Many of us have said, this was the absolute worst part of the journey ..... not knowing and thinking the worst.

We all hope you do not have an AN, but if you do, it is a very treatable condition and remember it is benign.  It is impossible for us to speculate on what you may have if it is not an AN, since most of us are not medical professionals and furthermore, we do not have access to your testing and/or results, nor your full history.  This is no way means that we do not care about how you are feeling or what you may have.

Many thoughts and prayers coming your way.  ..... and please let us know how you are doing!

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

leapyrtwins

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Re: Not Diagnosed yet but searching for answers...
« Reply #18 on: May 17, 2010, 02:40:12 pm »
I'm sorry. I'm sure it's extremely annoying that I'm here.

 :o

Michelle -

I hope you didn't get that impression from my post - because it's NOT AT ALL what I said or meant.

Everyone is welcome here and you are not annoying in the least.

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: Not Diagnosed yet but searching for answers...
« Reply #19 on: May 17, 2010, 03:23:08 pm »
I'm sorry. I'm sure it's extremely annoying that I'm here.

Michelle ~

You have symptoms that are very similar to what AN patients experience.  Those symptoms are debilitating and somewhat frightening.  You're frustrated.  You're seeking some answers and a bit of support.  Those are all perfectly valid reasons to post on these forums...and you're not the first person to post here that has AN-like symptoms but hasn't been diagnosed with an acoustic neuroma - yet.  As we've stated, we would rather you not receive a diagnosis of an acoustic neuroma, but we'll be here if you do - or, to be realistic, even if you don't.

Please don't feel that you're intruding or in any way 'annoying' anyone....because you're not.  If you were, as a moderator, I would have deleted your posts and sent you a PM warning you not to be 'annoying'.  That hasn't happened because you haven't done anything to apologize for. 

Quote
Obviously, I also hope that I don't have an AN or anything else wrong with me.

So do we, Michelle.  Try to stay strong and positive.

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.

Tisha

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Re: Not Diagnosed yet but searching for answers...
« Reply #20 on: May 17, 2010, 04:35:24 pm »
Hi Michelle,

My symptom was the ear fullness.  My regular ENT told me I had Mienere's Disease after a month of trying different presciptions, etc.  Never even bothered suggesting an MRI.  I was devastated at that diagnosis and when googling all about, I read about Neurotologist (an ENT who specialized in the inner ear).  I decided to make an appt. with one.  Well, he set me up for an MRi with contrast and balancing tests.  I had also been slightly dizzy for a year or so.  Well, turn's out it was an acoustic neuroma.

I found this board, like everyone else, and it was a godsend.  I have to say all the major decisions, advice, where to go, etc. came from the caring members of this website.  You could not have found a better one. 

Please...insist you have an MRI with contrast.  If I had just accepted my ENT's advice (who I had been going to for years), how disastrous that could have been.  The ironic thing is she has a neurotologist in her GROUP, and didn't sent me to him...can you believe it?  I found that out later.  You have to be your own advocate.  If this ENT doesn't want to do it, find a neurotologist...they will!  Good luck and god bless.   Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

sues1953

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Re: Not Diagnosed yet but searching for answers...
« Reply #21 on: May 18, 2010, 07:01:21 am »
HI Michelle,

I am sending prayers your way as you see your ENT.  I hope you get that MRI and find that you do NOT have a brain tumor.  I am having Translab surgery for a 3.2 cm AN on May 20th but I will be checking on your statis.  Stay strong and God bless you.

Sue
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #22 on: May 18, 2010, 08:11:42 am »
Thank you again, all of you, for your kind words and support. This morning I have the audiogram, and I'm assuming that from there I will be referred to an ENT. I just hope it doesn't take weeks to get an appointment!

I will let you all know how it goes. Thanks so much.

Sue, good luck! My prayers are with you for a successful surgery and quick recovery!

-Michelle

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #23 on: May 18, 2010, 10:04:52 pm »
Audiologist appt. was pretty quick and uneventful. She told me moderate hearing loss in my right ear with no evidence of middle ear fluid. Referral to ENT. Now the waiting for approval for the referral and then an appt. Should be in the next few weeks. Thanks again for all the help.

-Michelle

sues1953

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Re: Not Diagnosed yet but searching for answers...
« Reply #24 on: May 19, 2010, 06:10:56 am »
Thank you Michelle for the well wishes.  The waiting game is tough but try not to worry.  I know you are busy with your kids so do try to stay positive  :).  You will get the answers you need and move forward from there.

Good luck to you  :-*

Sue
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

Lizard

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Re: Not Diagnosed yet but searching for answers...
« Reply #25 on: May 19, 2010, 11:37:30 am »
Michelle, Hopefully when  you speak to the ENT office you can request an MRI right off the bat.  I would try to get one even before the initial appointment.
Push for it, what do you have to lose?

Hang in there I know you'll get to the bottom of this soon,
Liz

 :)
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

moe

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Re: Not Diagnosed yet but searching for answers...
« Reply #26 on: May 21, 2010, 03:04:03 pm »
Hi Michelle,
Read this post and your other one too.

I ditto what others have said. You are not being annoying! If you were being annoying and we wanted to avoid you, we wouldn't open the post and read and respond ;)

But that's what the forum is for- to vent and ask questions, even if it means asking questions again and again about the same issue.
No worries.

Hopefully you are feeling better by enjoying your kids, the outdoors. Keep pestering to get that ENT appt and don't leave until you have the order for the MRI with contrast!

I blissfully ignored my subtle symptoms for many many years. I was a busy mother of 3, part time nurse/military wife/ etc....... You are on top of the game by getting to the bottom of this now, so keep that it mind.

Try some relaxation things along the way if you can- you sound like a VERY busy lady!

 Big calming breaths help. In through the nose as deep as you can and then exhale slowly as if you are blowing bubbles.

 I loved actually blowing bubbles with my kids when they were smaller. Something about all those floating bubbles. Think of your worries in the bubble as they float away and POP they're gone (Okay I'm such a polly anna).

Laughter therapy works wonders. Watch some funny movies with your kids. We LOVED watching those goofy Pet Ventura movies with Jim Carey. I actually love all of his movies. Some people can't stand him, but I end up gafawwing on certain parts of each movie.
Liar, Liar
Evan Almighty
2 that come to mind.

And if you must, eat chocolate! It has that ingredient (?) that helps the moods.
Hopefully you don't have an AN, so let's presume you don't until the verdict is in.
Peace,
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #27 on: May 24, 2010, 09:43:40 am »
Thanks again to everyone for your help and concern. I'm trying to be patient and keep my mind off of these troubling symptoms while I'm waiting for answers. I just want it to all go away.

Thanks again,
Michelle

nanramone

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Re: Not Diagnosed yet but searching for answers...
« Reply #28 on: May 24, 2010, 03:17:43 pm »
Michelle - I'll throw in my 2 cents worth.

I noticed then ignored all of my symptoms for years. I had intense vertigo with vomiting several times, hearing loss, tinnitus that eventually became constant, mild confusion that may or may not have been caused by this thing, and still, I didn't go to the doctor.

I had GK on 5-18. The doctor's guess is that this AN has been with me for 6-7 years, based on the history of my symptoms.

I think you are correct to seek medical attention. Things are working out well for me now, but I'm sure I should have at least had my hearing tested before it got this bad.

By the way - I used to run a lot, and several years ago I also used to experience that "thud,thud,thud" you mentioned...never knew what it was, but it was annoying!

I hope things turn out well for you...keep us informed, and please try to relax about this. I know that's easy to say, but I hope you find some peace and some answers...

Nancy

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #29 on: June 08, 2010, 01:53:51 pm »
I'm just checking in and saying Hi. I'm STILL waiting on the ENT referral, but I'm much more patient now. Thanks again for all of the help and advice