Author Topic: Newbie from MI  (Read 4352 times)

Denise S

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Newbie from MI
« on: October 02, 2009, 09:18:29 pm »
 ;)  Wasn't sure where post this, but wanted to say Hi! 

I've been lurking around the forum and website for months now.  Lots of great reading and info.

Anyways, my name is Denise and I'm a 38 yr. old spouse and mother of 2.

I had an incident 2 1/2 yrs. ago that led me to a catscan.  At that time a tumor was diagnosed and needed additional MRI's.  This was NOT the AN the doctors were worried about.  WELL, after MRI's every 6 months, that tumor was staying the same and not a concern, BUT the AN was growing at a quicker rate than normal.   I went for throrough testing at MEI and more detailed MRI's down in Detroit.  After another detailed MRI 8 months later, the tumor is still considered small, but is still growing faster than average.  I've done lots of research, etc.  I've seen other dr.s, etc. too.  My husband & I (along with neurosurgeron & otologist) decided Middle Fossa would be best and hope to preserve my hearing (that has been declining). 

Surgery is scheduled for 11/9/09.

Wouldn't mind any messages or info. from others that have had this type of surgery. 

THANKS,
Denise

W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

leapyrtwins

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Re: Newbie from MI
« Reply #1 on: October 02, 2009, 09:28:30 pm »
Hi, Denise. Welcome to the Forum  ;D

I'm a 48 year old, divorced mother of 2, from Illinois, and I had retrosigmoid surgery in May 2007.  I had a BAHA implant in March 2008.

Mid fossa is the best way to save your hearing, if there's anything worth saving.  Are you having your surgery @ MEI?  I've heard great things about the doctors there.  Who's doing your surgery?

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

MissMolly

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Re: Newbie from MI
« Reply #2 on: October 02, 2009, 09:53:18 pm »
Hi Denise,

I had my surgery 3 months ago.  I went the Mid Fossa route and my hearing was preserved, despite it being pushed up against my cochlea.  I had absolutely resolved that I would wake up from surgery with single sided deafness.  Boy was I surprised when I could hear!  If I hadn't had the surgery, my hearing would have continued to fail in that ear, so I am definitely grateful for it being preserved. 

The surgery itself is, well, brain surgery. I was in hospital for 5 days, including my surgery date.  You will hear from other post surgery folks (posties as we're called) that the first three days after surgery are the most challenging and you just have to get through them.  After that, recovery happened relatively quickly.  I remember feeling that every day I felt 50% better.  Of course there is a plateau here and there, but I'm almost back to normal.  I do still get tired and have to nap.  :-)  And I continue to go to Physical Therapy to get my balance 100% better (I'm at about 85% right now). 

I will say that, the surgery was worth it for me.  In many ways I feel more clear headed and better focused.   I was having terrible bouts of vertigo while the tumor was there and I feel much better.  Occasionally I get a headache, but Tylenol takes care of it in a jiff. 

Keep posting and you will hear lots of stories of people's experiences with this.  Keep in touch.


Miss Molly
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

ppearl214

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Re: Newbie from MI
« Reply #3 on: October 03, 2009, 06:24:23 am »
Hi Denise and welcome. I did not have surgery but opted for radio instead (CK).... but, did want to say "hello", welcome you to the forums and good to have you here.  There is a wealth of info here, so please take your time in your research as you prep for your treatment... and I know the gang here (as you can already see) are more than happy to say "hi" and share experiences.

Again, welcome.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

doctorb

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Re: Newbie from MI
« Reply #4 on: October 03, 2009, 07:05:57 am »
Hi Denise,

Glad to see you gathering information and the support of fellow AN Patients before your surgery....I wish I had done the same before I had my Giant Tumor removed just over eight weeks ago. 

I wish you all the best.  Hope you enjoy a trouble free speedy recovery!

Doc

;D I'll Be Back  ;D

another NY postie

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Re: Newbie from MI
« Reply #5 on: October 03, 2009, 07:15:21 am »
Hello!  I am ten days post op Middle fosa and am having an amazing recovery - tumor gone, no ringing, facial nerve perfect, never used walker, cane, balance seems good...it has been amazing.  I did lose my hearing though.  You can pm me any questions.  TOday I go off the steroids so I am expecting a crash.  I went out to House for it and am headed back to NY this morning.  Am very, very happy that I chose this, even with the hearing part ;D
Good luck!
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

cindyj

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Re: Newbie from MI
« Reply #6 on: October 03, 2009, 07:17:47 am »
Welcome, Denise!  Sounds like you've done your homework and are doing all the right things...I didn't have mid fossa, but a number of folks around here have.  Most recently, Cheryl (Another NY newbie), who just had surgery about a week ago.  She's posting here again and doing very well.  You can catch her story on a thread in AN community...here's the link, but I'm not the best at this techinical stuff, so it may not work:

http://anausa.org/forum/index.php?topic=10566.0

Best to you in Nov (my surgery was Nov 7, almost one year ago), you should be feeling pretty good by Christmas!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Denise S

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Re: Newbie from MI
« Reply #7 on: October 03, 2009, 02:43:24 pm »
Jan,  to answer you couple questions:
My surgery will be at the new St. Johns Providence Park Hospital in Novi, MI.  They don't actually do surgeries at MEI, but my surgeon from there is Zappia, and then my neurosurgeon is Daniel Pieper.  Pieper has a special interest in AN's and had done 6 the week we spoke last.   As of right now, my hearing is good, so trying to get the AN out now will help on the side of preserving it....we'll see :-)

To the rest of you, THANKS for the well wishes & welcomes........and Cindy, I just realized that you posted a link for Cheryl's topics, so I posted there too....THEN I realized she posted to my topic only about 2 minutes before you  :)  Maybe you guys have ESP  ;D

thanks again
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Jim Scott

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Re: Newbie from MI
« Reply #8 on: October 03, 2009, 02:47:17 pm »
Hello and welcome, Denise ~

I didn't have Middle Fossa surgery (I'm a Retrosigmoid veteran) but I wanted echo the many previous good wishes and reminders that we're here to help with information and advice, when we can.  I trust your surgery will be successful and complication-free, much like Cheryl ('another NY postie').  We stand ready to respond to your queries and comments and hope we can help you get through this with a minimum of drama.

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.

CHD63

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Re: Newbie from MI
« Reply #9 on: October 03, 2009, 03:36:57 pm »
Welcome, Denise .....

Sorry you have to deal with an AN, but glad you found this Forum of caring, supportive people.

I did not have Middle Fossa, but had Retrosigmoid 19 months ago.  I had 80% hearing going in to surgery, now have 20% which is boosted with a regular hearing aid.

Best wishes as you walk through this pre-treatment phase of the journey.

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: Newbie from MI
« Reply #10 on: October 04, 2009, 11:08:10 am »
My surgery will be at the new St. Johns Providence Park Hospital in Novi, MI.  They don't actually do surgeries at MEI, but my surgeon from there is Zappia,

Denise -

thanks for the clarification.  I guess I phrased my question wrong.  I know that MEI doesn't do surgeries at their facilities, they do them at a hospital - similar to my doc who is with Ear Institute of Chicago (Chicago Ear).  You are in great hands with the docs from MEI - as I said before, I have heard nothing but good things about them. 

Good luck on your surgery,

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