Author Topic: Middle Fossa on July 1st.  (Read 4832 times)

Darlene

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Middle Fossa on July 1st.
« on: June 03, 2009, 09:02:19 pm »
Hi Everyone,

Well I set a date for surgery!   Dr. Roland & Golfinos will be doing the surgery at NYU on July 1st.  Who knows if I'm still in the hospital maybe I will get to see the  Macy Day fireworks from my room!.  Anyway,I had another hearing test and my Speech Discrimination is at 92% @60db so Dr. Roland said I was a candidate for hearing preservation surgery.

This has been a grueliing decision but when push comes to shove, and as the shock is beginining to wear off, I need to takie in to account what I know about myself, and know that with radiation or watch and wait, I would make myself insane worrying about the what if's or deny the existence and eventually not be very diligent about proper follow up. 

For me, I just want to be done thinking about this decisoin everyday.  I recently read a book called The Paradox of Choice and it had an interesting statistic in it about choice.  It stated that 67% of people say they would like to have some say in their treatment if diagnosed with cancer, but a survey of people who were actually dealing with cancer showed that 86% would rather not have to make decisoions regarding their treatment.   I guess the thought that you have to live with the choice you make is really difficult and in my case with this An,the absolute truth.  It has been a really tough decision  i looked at the facts, my feelings and fears and am really hoping that the gamble I am taking will pay off. 

Thanks to everyone on this site you are amazing people and I really appreciate you sharing your thoughts and feelings, it has been a great help. 

Taking it one step at a time,
Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

sgerrard

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Re: Middle Fossa on July 1st.
« Reply #1 on: June 03, 2009, 09:21:27 pm »
It has been a really tough decision  i looked at the facts, my feelings and fears and am really hoping that the gamble I am taking will pay off. 

I think that is a good description of the boat we are all in as we face having an AN. Congratulations on making the decision, it is often the hardest part. Now just put it out of your mind until it happens.

Best wishes,

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.

leapyrtwins

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Re: Middle Fossa on July 1st.
« Reply #2 on: June 03, 2009, 10:55:55 pm »
Darlene -

congratulations on the date  ;D

IMO, you made a great choice in Drs. Roland & Golfinos - they have an excellent reputation - and the mid fossa approach sounds like it's definitely your best bet. 

Don't second guess yourself.  Like you said, you've looked at the facts, your feelings, and fears and you made your decision.  Be confident in your choice.

You'll be fine!

Best,

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

moe

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Re: Middle Fossa on July 1st.
« Reply #3 on: June 03, 2009, 11:20:49 pm »
Darlene,
Glad to hear about your decision. I think the gamble WILL pay off if the docs are optimistic about hearing preservation.
So good positive thoughts your way through the next month.
Hopefully your symptoms aren't too bothersome and you can get stuff done before surgery?
In my case, the MRI showed the size and location of the tumor and the immediate conclusion was :Brain surgery :o
So I missed out on all the anguish about decision making but am sure that it is a relief to "get the show on the road."
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

Kate B

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Re: Middle Fossa on July 1st.
« Reply #4 on: June 04, 2009, 12:48:06 am »
Darlene,

It is interesting how much an email can really express.  Your sense of confidence and comfort in the decision you made is evident in your words.  The book, The Paradox of Choice, sounds like a timely read.

There used to be a commercial for an antacid that asked, "How Do You Spell Relief? Of course the answer for that was the name of the product.  With  those with AN's, the answer has got to be D-E-C-I-S-I-O-N made :)

Hmmm... And to boot you will have one of the best seats in the house for the Fourth of July parade and fireworks.

All the best,
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

alwaysthere

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Re: Middle Fossa on July 1st.
« Reply #5 on: June 04, 2009, 05:41:50 am »
Darlene,

I couldn't have said it better. The feelings you talked about are exactly how I have felt.After going over everything I was told, surgery was and still is the only route for be. Like you, I would drive myself nuts if I had taken any other route. My surgery is June 25th and I hope to be home to watch the fireworks. Where I live I have a great view of our cities fireworks from our back deck.

I hope everything goes good for you and all the rest who have upcoming adventures in the world of AN's.

Patty
Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

Darlene

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Re: Middle Fossa on July 1st.
« Reply #6 on: June 04, 2009, 08:37:59 am »
 Steve,
I am going to take your advice and after the next few days of having to tell work, family & friend I am hoping to put this out of my mind.  Having a lot of end of school activities for my kids should really help.

Jan
Yes, I am pleased with my Dr. choice I really weighed going with the gold standard of House but after visiting another neurosurgeon at a different hospital and being told that "Roland is the guy!"  I figured the comfort of being close to family and friends will be very beneficial.

Moe,
Luckily, I don't really have too many symptoms which made the decision making (for me) even harder but I can't thank you enough for your good positive thoughts.  I am firm believer in positive thoughts, well wishes and prayer so I will take as much as I can get. 

Kate,
Decision made is truly great!   By the way I found your An world site another very helpful resource in clarifying my thought process. Thanks!

Patty,
Good luck on the 26th!  Please keep us posted on your progress as I am sure we will be going through much of the same in the next few weeks.  I will keep you in my thoughts and prayers for a 4th of July filled with good health and healing. 

Thanks everyone,
Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

Darlene

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Re: Middle Fossa on July 1st.
« Reply #7 on: June 04, 2009, 08:42:32 am »
Sorry Patty, I meant the 25th!   I am writing it on my home calendar so I can send positive thoughts and prayers your way on surgery day. 


Take care,
Dalrene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

Mickey

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Re: Middle Fossa on July 1st.
« Reply #8 on: June 04, 2009, 09:39:18 am »
Hi Darlene! Although still waiting and watching with stable results over the past few years, Dr.s Roland and Gofinos are my Dr.s also. I think they are a great pair with very much experience and your in great hands. If the time comes I`ll be using them for treatment also. Prayers and all the best!, Mickey

Jim Scott

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Re: Middle Fossa on July 1st.
« Reply #9 on: June 04, 2009, 02:28:07 pm »
Hi, Darlene ~

A just-slightly belated congratulations on making this weighty but very necessary decision.  As we often say, the hardest part is now over.  :)

You have fine, AN-experienced doctors operating out of a prestigious institution and you'll be going in with a positive attitude - all factors in your favor.  I've always believed in the fact-based cliché that 'life is a risk' and acted appropriately.  I've taken a few (career, marriage, financial, etc) and usually come out O.K.  Not always exactly where I expected, but O.K.  Like every other AN patient, I wanted the best outcome with the least amount of risk.  I soon learned that couldn't be guaranteed but that with a very experienced, compassionate neurosurgeon specializing in AN removals (with decades of experience) using a very conservative approach to my case, I was able to minimize the risks and with much prayer, I again came out O.K.  Not perfect, mind you, but O.K.  I pray that you'll have a similar experience. 

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: Middle Fossa on July 1st.
« Reply #10 on: June 04, 2009, 02:45:00 pm »
Darlene .....

So glad the date is set.  Now you can spend the next couple of weeks focusing on time with friends and family, doing lots of fun things to keep your mind off the heavy load of the decision-making.  I don't know about you but I can deal with the known much better than I can the wondering what, when, how, etc.

My thoughts and prayers are with you.

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

Darlene

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Re: Middle Fossa on July 1st.
« Reply #11 on: June 04, 2009, 08:15:47 pm »
Mickey,
Your watch and wait status is very impressive and something I considered in my fact finding.  I hope that you never have to get treatment, because you are certainly an expert in the watch and wait field.    Dr. G & R are very nice guys but more importantly talented surgeons so I know I will be in very good hands.  Thanks for the well wishes and the vote of confidence in the DR. choice it is very reassuring. 

Jim,
Your words are very true and astute no matter what action or inaction I do it involves risk- at least making a fact based risk (for my particular circumstance) narrows the chances of a negative outcome.  I think I have come to accept that although I can hope for a perfect outcome an OK one is more realistic and have finally reached the conclusion I have done my homework and that my AN journey will be what it will be. I  especially appreciate your prays for a similiar experience  to yours and I really hope it comes true.     

Clarice,
You are 100% right, I was making lists of thing I need to get done... but you know what, I am gone plan some fun!  Housework, errands and obligations are no longer priorities.  I am going to the movies, camping and minature golfing, things to keep my mind off my upcoming surgery.   I hope my family doesn't mind the dust and dog hair piling up but I do know my mom will take great pleasure in cleaning my house during my recovery period.  She has great difficulty with my leniency in letting my kids leave their rooms somewhat messy and it may give them a day or so of reprieve before she has them scour the insidie of their closets.   Well maybe I will have to do a little cleaning prior, I don't want her too overwhelmed!  :D   Thanks for your thoughts and prayers I really appreciate it. 

Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

RES

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Re: Middle Fossa on July 1st.
« Reply #12 on: June 09, 2009, 11:41:32 am »
Darlene,

I had Middle Fossa surgery on May 14th at the University of Iowa. I made the choice to save what hearing I had in my left ear and I'm glad I made the choice. I can actually hear a little better (although my wife disagrees) and the tinnitus is less than it was going in. I hope you have similar results. Good luck with your surgery and I'll keep you in my thoughts and prayers.

Take Care,

Ron
Ron
AN 1.9CM Left Side
Middle Fossa Surgery @ University of Iowa 5/14/09
Drs. Gantz & Woodson (Great job!)
No major Post-op issues.

m4guzman

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Re: Middle Fossa on July 1st.
« Reply #13 on: June 09, 2009, 11:50:46 am »
Hi Darlene,

I had mid fosa on April 27th with Dr Goldifinos and Roland.  They are both great doctors.  Please pm me if you
have any questions.  Good luck. 

Marybeth
1.5cm on left side MRI 2/2/09
Some hearing loss
Thinking about surgery

catlover

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Re: Middle Fossa on July 1st.
« Reply #14 on: June 10, 2009, 02:46:55 pm »
Hi,
Congrats on the date! It's scaring to make a decision, but it is also a relief when you finally have. I'm sure everything will go smoothly and that you get a great outcome. I'll be thinking of you.

All the best from Helene   :)
AN found in February, 2006, size 0,8 cm
Surgery 20th May, 2009, retrosigmoid approach
SSD and balance issues
Forever grateful to Dr Siesjo and Dr Kahlon, University Hospital of Lund, Sweden
Two AN:s found 1st March, 2016
Waiting for GK