Author Topic: Nan's recent events-outcome of Chicago  (Read 5174 times)

nannettesea

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Nan's recent events-outcome of Chicago
« on: April 24, 2006, 03:34:08 pm »
Hello to all my AN buddies,
I'm back in WA after my trip to Chicago last week.  It was enlightening.  Dr. Tim Hain has hypotheses.  Every patient raved about him, so I feel good that I saw him.  He is very astute, and "thinks outside the box."

Regarding my dizziness, he thinks one of 3 things are possible:
1) I had many VEMP tests.  One showed residual vestibular function in the right/AN ear, which is really disturbing because I had the trans-lab, sacrificed great hearing in order to cut ALL vestibular fibers.  Did the doc get them all?  I hate to think not.  So he prescribed a trial of Trileptal to see if it helps.  If it doesn't work in a few days, I stop and move to #2.
2) Gave me Klonapin, don't remember reason.  It's used for motion sickness.  2-3 day trial.
3) Gave me migraine med to try for a month.
 
I'm wiped out from the trip, good to be home mostly, but my Christmas cactus that is from a cutting over 80 years old nearly died (hubby didn't water) and cat hair everywhere.  Small matters, I know, but I am so sensitive to everything these days.  I just want the dizziness to go away...I'm sick of complaining to everyone, sick of talking about it, just mad and want my life back.

Thanks for listening
Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

Raydean

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Re: Nan's recent events-outcome of Chicago
« Reply #1 on: April 24, 2006, 03:45:18 pm »
Welcome Back Home Nan!!!   Couldn't of asked for better weather to come to.   Thanks for posting the results from your evaluation.  I know there are many of us who were thinking of you and wondering.  Please keep us posted  and call me when you're up to it.

Hugs
Raydean
Do not go where the path may lead, go instead where there is no path and leave a trail.

matti

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Re: Nan's recent events-outcome of Chicago
« Reply #2 on: April 24, 2006, 03:55:42 pm »
Welcome home Nan. Missed you! I know you did not get the results you were looking for, but at least Dr. Hain listened, unlike some others, and gave you some new ideas and things to try.

This has been a long and trying journey for you and always know that we are with you every step of the way. It's OK to be mad!!

I am always here if you need anything.

Hugs
Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

nannettesea

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Re: Nan's recent events-outcome of Chicago
« Reply #3 on: April 24, 2006, 04:18:06 pm »
Thanks, Raydean and Cheryl,

We all have our trials, but your support means so much to me.
I've got you both on my call list and will be in touch!

Cheryl, hope you're feeling better--know you've had a tough go lately.

Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

Gennysmom

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Re: Nan's recent events-outcome of Chicago
« Reply #4 on: April 24, 2006, 05:11:01 pm »
Hello Nan...yes great weather we are having!  I sent you a personal email, but got my answer here!  I'm glad you're back!  Look forward to seeing you.

Don't worry...the cactus will bounce back.  I have 3 that I keep trying to kill, but they keep coming back.  A little TLC and it will be fine!

I hope at least one of these steps will make your quality of life better.  I think once you have a little of that, things will look rosier.  Keep us updated on how they are all working for you!



3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Battyp

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Re: Nan's recent events-outcome of Chicago
« Reply #5 on: April 24, 2006, 05:57:12 pm »
Nan welcome back :-* :-* 
Sounds like FINALLY you're getting somewhere! 

Keep us posted on how all your meds work out and know you can call anytime!
It's funny the little things frustrate me lately too..guess for me a lot of it is because I can't do like I used to!


Captain Deb

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Re: Nan's recent events-outcome of Chicago
« Reply #6 on: April 24, 2006, 06:16:37 pm »
Welcome home Nan!

Hope to talk to you on the Friday Night call!  No one gets to have a headache this week--BY DECREE!

Captain Deb 8)
"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
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ppearl214

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Re: Nan's recent events-outcome of Chicago
« Reply #7 on: April 24, 2006, 06:32:12 pm »
N-A-N!!!!!!!!!!!!!!!!!!!!!!!!!!


WELCOME HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Thrilled that the doc is working closely with you and things WILL get better!

Oh, soooooo thrilled you are home!!!!!!!!!!!!!!!!!!


{{{{{{{{{{{{{{{{{{{{{HUGGLES}}}}}}}}}}}}}}}}}
[/color][/b][/size]
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

nannettesea

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Re: Nan's recent events-outcome of Chicago
« Reply #8 on: April 24, 2006, 08:10:49 pm »
I love all you guys.  Phyl, sweetheart, your cheeky bloke arrives soon!  Yeah!

Thanks so much for rooting for me.  I WAAAY overdid my first day home.  I have wheels again!  Will pay tomorrow, I'm sure.

I sure hope one of these things work that the doc suggests.  If not I'm going to demand the gentamycin injection to kill the hairs in my bad ear.  My surgeon doesn't want to do it, but he make see differently if he didn't get all those damn nerves...I'm thinking the m....... word, not the litigous kind, and I love my surgeon.  But I swear, I know something else is wrong, just like I knew 3 years ago something was wrong with my ear despite normal hearing tests.  Now I'm SSD and still dizzy.  Blah blah blah.

So keep hoping and praying for me, for those who do, and I will do the same for every one of us in the AN boat, er cruise.

Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

Static

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Re: Nan's recent events-outcome of Chicago
« Reply #9 on: April 25, 2006, 06:40:28 am »
Nan,
I hope the Doc's ideas work for you.  Keep us posted.  I'm sure you are tired from such a long trip.  I don't do well on long car rides myself!  'Tis ok though, been home keepin busy with the new pup.  It's a workout but she's a cutie!  Only you know how you feel and sometimes it's hard to express to the docs who have ideas of their own.  Sometimes they just don't get it.  I haven't met one that does  :-\  Best wishes to ya!  {{{{{{{{{{hugs&puppysnuggles}}}}}}}}}}
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

DeniseSmith

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Re: Nan's recent events-outcome of Chicago
« Reply #10 on: April 25, 2006, 06:53:01 am »
Nan,

Glad to hear the Chicago Doc gave you some options to try.  I hope and pray one will work for you.

Don't over do it!! You deserve some rest, travel is always stressful!!

Denise

nannettesea

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Re: Nan's recent events-outcome of Chicago
« Reply #11 on: April 25, 2006, 10:22:33 am »
Thanks, all.  Exhausted today, of course.  Trying to just "be" with it...

Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05