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Author Topic: Just joined  (Read 5613 times)

MichaelUK

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Just joined
« on: January 09, 2009, 06:49:22 am »
Hi all ive just joined the site im Michael im from the uk,I had a op to remove a 4.5cm AN in aug07 and had a very stormy post op was in hospital for 9 weeks.
Im a member of BANA and found this site through them this is a great site.

Michael
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Kaybo

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Re: Just joined
« Reply #1 on: January 09, 2009, 08:18:06 am »
Micheal~
Hello and welcome!!  Glad you have found us here!  I had quite a few post op issues (didn't have a long hospital stay though) but am doing really well now - would like to hear more about what all you dealt with.  How are you doing now?  Let us hear more from you...

K   ;D
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

mimoore

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Re: Just joined
« Reply #2 on: January 09, 2009, 10:08:56 am »
Welcome Michael,
Wow 9 weeks is a long time to stay in the hospital. How are you today? You will love this forum... great people with real experiences with ANs. I feel this forum has been more valuable than many of the doctors I have seen.
M  ;D
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Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

wendysig

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Re: Just joined
« Reply #3 on: January 09, 2009, 10:22:51 am »
Hi Michael and welcome,

Wow 9 weeks in the hospital!  I hope you don't mind my asking why you were there so long?  I think you will find this forum a wonderful source of information and  comfort.  I'm glad you found us -- feel free to vent, ask questions and join in the occasional hilarity here.

Best wishes,
Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

MichaelUK

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Re: Just joined
« Reply #4 on: January 09, 2009, 11:01:39 am »
Hi all,Well after my op i had a CSF leak because my op was so long and it wouldnt stop so they did a fat graft from my tummy and went back in and stopped it but i noticed i didnt know who my familiy or friends were, and when the curtains on the ward were opened in the morning i couldnt stand the light then i had a fit and was told i had court Menengitis which nearly wiped me out,Then when after i was treated for that(20days)i noticed my 3 scares were opening up and all infected i had caught MRSA and when i was treated for this and was all clear i was let home.
My recovery is very good i go to the Lindens clinic and use a Nero 4 stimulator every day and my last ECG was 57% for my nerve count.and my voice has come back after losing that ,Ihave no feeling and tinitis, and double vision since Dec07 since i had a botox injection to close my eye lid when i had surgery on it upper lid weight and lower lid lift.But they said if the double vision dosnt go away  by itself they can do squint sergery.
Ive been through alot but so lucky and look at life in a different way.

Michael
« Last Edit: January 09, 2009, 04:15:17 pm by msb1971 »
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lori67

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Re: Just joined
« Reply #5 on: January 09, 2009, 11:18:49 am »
Hi Michael and welcome!

Wow - you have been through a lot!  Sounds like you have a good attitude and are doing well now.

I hope that all of the things that can and did go wrong for you are done with and everything goes well from here on in!

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Debbi

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Re: Just joined
« Reply #6 on: January 09, 2009, 03:39:34 pm »
Hi Michael-

Welcome - and what a story!  Wow.  You sound like you have a great attitude, though - and that can certainly help make it through some of the rougher days.  Hope you'll hang out for awhile.

Debbi, in New Jersey
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Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Pooter

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Re: Just joined
« Reply #7 on: January 09, 2009, 05:31:57 pm »
Wow.. welcome to the forum.  You'll find everyone here is very supportive and encouraging to you during your AN journey (as we like to call it).  I'm glad you found this site, but I'm very saddened by all that you have gone through.  It seems that your recovery is back on track and I wish you the best during this time.

Regards,
Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

jazzfunkanne

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Re: Just joined
« Reply #8 on: January 10, 2009, 05:22:49 am »
Hi Michael, its anne from the uk BANA site , this is a great site isnt it, glad your doing well take care
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over 4.5cm AN removed dec 06

MichaelUK

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Re: Just joined
« Reply #9 on: January 10, 2009, 05:48:40 am »
Hi anne doing great thanks!
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leapyrtwins

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Re: Just joined
« Reply #10 on: January 10, 2009, 02:37:25 pm »
Hi, Michael and welcome.

I had a fat graft, but it was part of my AN surgery - a very common thing here in the states.

Nine weeks in the hospital post op?  That must be some kind of a record!  :o

Glad things are going well now.

Jan
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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

MichaelUK

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Re: Just joined
« Reply #11 on: January 11, 2009, 07:53:37 am »
HI,It felt like a record and don't ever want to try and break it :)Was only going to be in for 10 days but the Menengitis and MRSA took some getting rid of i was swabed every 2 weeks and if one swab was positive i was treated again for another 2 weeks never thought i was going home.
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MAlegant

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Re: Just joined
« Reply #12 on: January 30, 2009, 06:52:22 am »
Michael, you certainly have been through it.  I'm glad to hear you are coping well, and I wish you continued recovery. 
Best,
Marci
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Sue

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Re: Just joined
« Reply #13 on: February 11, 2009, 01:28:27 am »
Michael, I'm so sorry you had such a rough recovery period.  You had a giant AN, so a lot can happen because of that, and it would seem that it all happened to you!  Bummer.  I hope that your recovery gets better and better and that the future only holds good things for you.

Best wishes,

Sue in Vancouver, WA USA
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Richard in Palacios

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Re: Just joined
« Reply #14 on: February 26, 2009, 01:21:21 pm »
Howdy Michael,
You certainly have had some experiences that will allow you to share insights from a place very few of us have been.  I am delighted you are doing so well given the circumstances of your treatment and the complications that followed.  You are an inspiring fellow.  Pleae keep us advised as to your progress and know that you have found one of the finest groups of folks that exist.  Those who "post" here do so in as honest and forthright manner as anyone I ever dealt with.  You will be a valuable addition to our number.  When you have time, please give us the specifics of the surgical procedure you underwent.  I went the radiation route myself and so am not very knowledgable about surgical options.  How were you able to function with the AN being so large.  As I said earlier, you are an inspiring fellow.  Welcome to the group and "speak" to us often.  We learn best from those like you who have actually experienced the things some of us will never fully know.

Richard
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Was AKA "RED in Palacios". That account now inactive. Originally diagnosed in 10/06 9mm X 3.6mm Waiting and watching.
As of 4/08 15mm X 6mm.  No longer waiting and watching.  Had SRS 6/10/08 at Methodist Hospital in Houston
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