Author Topic: Not Diagnosed yet but searching for answers...  (Read 26561 times)

Lizard

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Re: Not Diagnosed yet but searching for answers...
« Reply #60 on: July 12, 2010, 02:44:34 pm »
Michelle,
You will be in my thoughts and prayers until you FINALLY come to a conclusion...hopefully no AN, but if you do have one after all, where here  :)

Hang in there!
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

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #61 on: July 16, 2010, 10:14:03 am »
My MRI is scheduled for Monday morning at 9am. I'm nervous. :(

nanramone

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Re: Not Diagnosed yet but searching for answers...
« Reply #62 on: July 16, 2010, 10:58:33 am »
michelle - I'm glad to know you're following through with all of this in spite of the stress - keep us updated.

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #63 on: July 16, 2010, 02:17:40 pm »
Thanks for the encouragement. Of course I just hope, hope, hope that they find NOTHING. I can live with these symptoms forever if I know that I don't have some kind of brain tumor causing them...My worst fear is that it's something worse than an AN. I know that's not likely. I will be thankful to finally stop wondering.

nanramone

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Re: Not Diagnosed yet but searching for answers...
« Reply #64 on: July 16, 2010, 09:24:34 pm »
I know this is a very difficult time. Having made the MRI appointment, see if you can find a way to relax throughout this weekend. It's summertime! Have some fun, and you will find out about your circumstances later, ok?

Just find at least a few moments of peace, so you can relax. It's important.

jazzfunkanne

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Re: Not Diagnosed yet but searching for answers...
« Reply #65 on: July 17, 2010, 03:30:52 pm »
hi michelle, ive just started reading your posts , good luck for monday and let us know how it goes, about the sudfed i used it for years before they found out i had a AN, so doctors dont know it all. x
over 4.5cm AN removed dec 06

suboo73

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Re: Not Diagnosed yet but searching for answers...
« Reply #66 on: July 18, 2010, 06:11:30 am »
Michelle, 

Hi and a belated welcome to the Forum!
I originally came to this site, as my sister (aka BigSister) had been diagnosed (quickly) with an AN.
Me - i went to 2 different ENTS over the course of 12+ years with inconclusive audiogram results, so finally gave up on going - UNTIL my sister's diagnosis.
I said 'What? I have been describing the same symptoms all this time!'
So i went to a major medical center, had another audiogram and then had same 'inconclusive' results.  At this point, i said, "Look, my sister has an AN and i similar symptoms...  I would like an MRI for my peace of mind."  Doc said, no problem, and the rest is history.

In fact, i had the MRI at my local hospital and after waiting for a week, called and got a copy of the report myself.
I was alone, my husband on a business trip.  Believe it or not, i was relieved to read the report - it gave me some answers instead of more questions.

But my point here is this:  I believe knowledge is power and wanted to know what was going on.

Now you have the opportunity to finally get some answers.

I wish you ALL THE BEST tomorrow. 
My thoughts and prayers are with you.

Sincerely,

Sue

PS.  Possible tips for MRI - if you have not had an MRI before, they can be loud/annoying.  The first one i had done, they didn't have headsets for music (i don't like them anyway, i found out.)  The technician put towels around my ears and i couldn't move my head.  My sister suggested closing my eyes (i am somewhat claustraphobic)  I was so determined to have the test done, i closed my eyes and tried to focus elsewhere.  It worked and i got thru the test.  Have had 2 more since, no problems.

Will be thinking of you tomorrow.  Please let us know how things turn out.  Take care.
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

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #67 on: July 18, 2010, 12:38:44 pm »
Thanks all!

I am not worried about the actual test. I do not have a problem with claustrophobia. I had an MRI as a young teen for scoliosis, and remember just being more bored than anything as it took over an hour, and was difficult at that age to keep still. Now, with 4 kids at home, I'm actually sort of looking forward to being forced to just lay there and do nothing for a little while with no one hanging on me saying, "Mommy, mommy, mommy!" Hehe.

I do feel relieved that I will have an answer soon about whether or not "something" is in there. Hopefully it's NOT, but if there is I'm thankful that I've found this kind, supportive group. You have all been so great, and I'm not even an official member of your "club!" (And, NO offense, but I hope I don't have to join!) ;-)

Thanks again,
Michelle

moe

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Re: Not Diagnosed yet but searching for answers...
« Reply #68 on: July 18, 2010, 07:13:16 pm »

, I'm actually sort of looking forward to being forced to just lay there and do nothing for a little while with no one hanging on me saying, "Mommy, mommy, mommy!" Hehe.


So true! I was soo tired prior to my diagnoses, and just plain didn't feel "good" or "right" so I dozed right through mine! Enjoy your time alone :)
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 #69 on: July 19, 2010, 08:24:26 am »
I leave in 1 hour for my MRI. I'm nervous about the results.

I've seen people mentioning receiving a cd of their MRI. How does one obtain that? Do you just ask? Do you have to bring your own cd?

sgerrard

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Re: Not Diagnosed yet but searching for answers...
« Reply #70 on: July 19, 2010, 09:03:48 am »
Michelle,

I just asked, and did not need to bring my own CD. I hope that works for you too. Best wishes on the MRI, and relax.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #71 on: July 19, 2010, 11:23:41 am »
Well, I'm already back from the MRI. I decided not to even ask for a cd. I will update when I hear the results from my ENT.

Thanks again for all the help.

Lizard

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Re: Not Diagnosed yet but searching for answers...
« Reply #72 on: July 19, 2010, 02:17:19 pm »
Michelle,
Well hopefully the Dr won't take too long to get back in touch with you. 
Hang in there,
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

michelle

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Re: Not Diagnosed yet but searching for answers...
« Reply #73 on: July 20, 2010, 06:09:09 pm »
I just picked up my report and CD from the imaging center. From what I can tell on the report, it was NORMAL!!!!

Thank you so much, everyone, for being so kind and caring. Seriously! And for putting up with my neuroses.

I wish you all the best in your journeys. Please feel free to reference my situation to those undiagnosed people who are led here by their symptoms. You can have unilateral hearing loss, fullness, tinnitus, headaches, etc...and still end up NOT having an A.N.

My prayers will be with all of you going through this battle. My eyes have been opened up to this condition that I never even knew existed!

All the best, God Bless, and THANK YOU for keeping me sane during the waiting period.

-Michelle

nanramone

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Re: Not Diagnosed yet but searching for answers...
« Reply #74 on: July 20, 2010, 08:03:18 pm »
Michelle,

I hope you read things correctly! Yippee for you, and I hope you find the reason and a solution for your problems.

Nancy