Author Topic: Mid Fossa Surgery other than HEI  (Read 11134 times)

ppearl214

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Re: Mid Fossa Surgery other than HEI
« Reply #15 on: March 10, 2008, 01:32:32 pm »
mary,
sending you oodles of huggles and wellness wishes.... before you know it, you, too, will be a "postie" :)

Glenda, my good witch, thanks for the kind words.  You know, regardless of what you do or choose, I'm going to click my heels 3 times for you.  The Wizard's hot air balloon is ready to ride you on to wellness :)  ..... and no worries, I'm hanging tough.. thank you hun for thinking of me...  :-*

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

Glenda

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Re: Mid Fossa Surgery other than HEI
« Reply #16 on: March 10, 2008, 07:33:42 pm »
Mary,
I'm so glad you have made it through the decision process!  I too send you lots of hugs and wellness wishes :)  I will be looking for you as a "postie" 
I'll be praying for you and the drs.  It's just human nature to be nervous but try to think good and happy thoughts  ;D

Munchkin Phyl,
Thanks for the heel clicks and for making sure the Wizard has the balloon ready ;D
I know you are hanging tough, it would be unlike you to do anything but.   :-*  You are also in my prayers and I'm here if you ever need me!

Good Witch Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

leapyrtwins

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Re: Mid Fossa Surgery other than HEI
« Reply #17 on: March 10, 2008, 09:37:01 pm »
So, how many of us can the balloon hold  ???

I want to go, I want to go!!!

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

Glenda

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Re: Mid Fossa Surgery other than HEI
« Reply #18 on: March 11, 2008, 07:43:50 pm »
Come along Jan!!!  It's the magic of Oz.  I know the balloon can hold us all!! ;D

We can't do without all our friends!!  We definitely ALL want to ride on to wellness!

Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

OTO

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Re: Mid Fossa Surgery other than HEI
« Reply #19 on: March 11, 2008, 07:55:40 pm »
Glenda

I had my middle fossa on 22 May 07.  They were able to save some of my hearing (I don't know the %...  I can't find my last audiogram... somewhere in my pile of stuff for my tax return or it fell behind my filing cabinet).   Anyway, I feel I'm back to where I want to be.   My facial nerve was a little stressed out, but other some slight tension and a crooked smile.  I'm okay.    I did have to travel to LA for the surgery, but it wasn't too bad.   Send me a PM, if you have any detailed questions....  OTO

Glenda

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Re: Mid Fossa Surgery other than HEI
« Reply #20 on: March 11, 2008, 08:28:34 pm »
Thanks OTO!  Another success for House.  They are looking better all the time! 

OK!  I have heard from Dr De la Cruz at HEI!  First of all I am VERY impressed with him.  Such a caring person!  He acutally called me last night and again tonight after I faxed him some additional information this morning.  My daughter said "you can't get a doctor here to call you back and he has called you twice all the way from LA", she was impressed also!  He did tell me that Dr Lambert who I saw in Charleston was an excellent dr. (made me feel better).  Dr Lambert did a year at House.  Dr De la Cruz said that even though my AN is small ,it is deep in the canal and he doesn't think hearing can be preserved (not exactly what I wanted to hear).  He advised to do what I had already decided, which made me feel good.  He advised to wait and do another MRI in 6 months and see if it is growing.  He said they may not grow at all for several years and they may grow alot as they are unpredictable.  He said I should enjoy the hearing I have as long as I could.  I told him I did not want it to grow into the facial nerve and he agreed wholeheartedly.  He said that is why he recommended a second MRI in 6 months, if it is growing we will decide what to do at that time, if not much growth then we can look at waiting another 6 months.  He recommended I get another MRI at the same location as the first one.  My dilemma now is, that MRI was done in Florence, Dr Lambert told me when I got ready to call him and we could do the MRI at MUSC and he would see me the same day with results.  I really don't know what to do ???  In my heart I would love to go to House.  I emailed Dr Lambert's nurse this morning and she sent me four names of former patients.  I have contacted one of them tonight.  She had a small tumor but did not know what size but had good results and loves Dr Lambert.  The thing that made me question her account is - I ask her if it was ok to talk to her and that I understood she had an acoustic neuroma.  She said "I don't know all I know is I had a tumor in my ear" ???  She didn't know the name of what she had nor did she know the size.  She said she didn't think about it she just had surgery.  She had some balance issues and went through therapy for about 3 months and it doing well now though she did lose hearing.  Who knows maybe it is better not to know too much ::)  I plan to call the other 3 patients but I'm sure they are all success cases or I would not have been given their names.  Now I have to decide if I want to save money and go ahead with Dr Lambert  or with Dr De la Cruz and the House team.  I must admit the caring that Dr De la Cruz has already shown me is wonderful!  Decisions decisions decisions........

Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

Kaybo

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Re: Mid Fossa Surgery other than HEI
« Reply #21 on: March 11, 2008, 08:50:50 pm »
Glenda~
I don't know, that other patient you spoke to could just be a dingy, naivve blonde like me!!   ;D

K
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!

Glenda

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Re: Mid Fossa Surgery other than HEI
« Reply #22 on: March 11, 2008, 09:18:16 pm »
K,

Remember I have spoken to you also.  She was nothing like you.  Her AN was small, you my friend had a monumental AN and didn't have a choice! you had to have surgery......
I just suppose some people are not like me, I have to dot all the i's and cross all the t's no matter what I am doing, which sometimes is not always the best thing :) When it comes to something as important as one's health and you have the opportunity to find out what is going on, I just can't understand not wanting to know ???
Anyway, at first I thought maybe she was just uneducated and didn't know how to investigate but then she told me she was a teacher so that was not the answer.  Who knows, maybe she just didn't want to know too much.....

May I also say I think you are one savvy blonde ;D

Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

leapyrtwins

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Re: Mid Fossa Surgery other than HEI
« Reply #23 on: March 11, 2008, 09:33:56 pm »
Glenda -

IMO, you should do what you are most comfortable doing and go with the doctor you have the most confidence in.  In other words, go with your "gut". 

As for the clueless patient, I can't imagine being one myself, but there are lot of them out there.  Some people just feel that ignorance is bliss  ;D

Jan

PS - as far as the balloon goes, is Toto coming too? 
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

Kaybo

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Re: Mid Fossa Surgery other than HEI
« Reply #24 on: March 12, 2008, 07:01:12 am »
Glenda~
You silly girl, I know I talked to you -- I was just being silly too!!  ;D
I would have liked to know more, but they just didn't tell all that back then & it was rush, rush.  I do feel so uniformed since everybody here seems to know EVERYTHING!  I think there are pros & cons to knowing so much.

I want in the balloon too.  I actually got to ride in one about a year ago - we had taken the kids to the park & then we saw that they were launching a balloon so I wanted the kids to see.  When we got there, the girl that was going to ride couldn't get ahold of her parents for a release so I went.  LOVED IT!!!

K
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!

leapyrtwins

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Re: Mid Fossa Surgery other than HEI
« Reply #25 on: March 12, 2008, 07:16:16 am »
Glenda~

I want in the balloon too.  I actually got to ride in one about a year ago - we had taken the kids to the park & then we saw that they were launching a balloon so I wanted the kids to see.  When we got there, the girl that was going to ride couldn't get ahold of her parents for a release so I went.  LOVED IT!!!

K

K -

how cool!!!  You are braver than I am, I've often thought about it, but haven't booked a flight yet.  I'm perfectly fine with planes, but a balloon is a whole different concept  :)

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

kbs

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Re: Mid Fossa Surgery other than HEI
« Reply #26 on: March 12, 2008, 10:13:43 am »
Hi Glenda-
I'm a new forum member, although I've been "lurking" as a guest for the past 4 months! I also live on the east coast (CT) and had mid-fossa surgery at HEI last August. Rick Friedman and Marc Schwartz were my surgeons.  I'm lucky that I have a husband who has tons of frequent flyer miles, so I went to HEI to check it out in advance before I went there for surgery.  I too had mid fossa surgery recommended by a local otolaryngologist, but his colleague/department head contradicted him and recommended Gamma knife.  I didn't feel very secure with that team, which prompted me to contact HEI.

For lots of reasons, I knew Gamma knife would not be for me.  The HEI surgeons spent a lot of time (2 hours) with me and my husband when we went for the preliminary visit,  explaining all the pros, cons, etc.  There's no denying that this a very scary adventure you're facing, but everyone at House was incredibly helpful and supportive.  The surgeons preserved my hearing (I had 85%  and it's unchanged), and although I have some minor balance and facial issues, I think I did OK.  I'd recommend them to anyone.

However, if you decide to stay closer to home, I think one of the most important questions you should ask the surgeons is how many middle fossa surgeries have they performed this month? this week?  It's the trickiest of the surgical approaches and you want to be sure that the surgeon has had lots of experience.  And if you don't feel secure, go see someone else.
Good luck to you,
Kathleen
P.S.  This forum is so great and will give you so much help and info.  I wish it didn't take me 4 months after surgery to find it!

ppearl214

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Re: Mid Fossa Surgery other than HEI
« Reply #27 on: March 12, 2008, 02:18:01 pm »
<---- 1/2 "unnatural" blonde that makes sure the gas tank for the hot air balloon is filled and ready for take off... for even Toto, too! :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Mid Fossa Surgery other than HEI
« Reply #28 on: March 12, 2008, 04:22:11 pm »
<---- 1/2 "unnatural" blonde that makes sure the gas tank for the hot air balloon is filled and ready for take off... for even Toto, too! :)

Wait a minute - it's been a while since I've seen the movie, but I think it's Glenda the Good Witch's line to say "and Toto too".   ;D

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

Glenda

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Re: Mid Fossa Surgery other than HEI
« Reply #29 on: March 12, 2008, 07:57:18 pm »
Well of course "and Toto too"  We can't very well leave out man's best friend can we ;D

Muchkin Phyl....Make sure we have a really BIG balloon!!! ;)

Good Witch Glenda

Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness