Author Topic: Sugery it is...gulp  (Read 3980 times)

cindyj

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Sugery it is...gulp
« on: August 30, 2008, 06:40:28 pm »
Well, I put off posting this all week, think I'm easing into my decision bit by bit.  Yet, oddly, I think I've known for weeks what I was going to choose.  Anyway, I scheduled surgery (Translab) for Nov 7th with Dr. Friedman (House).  I don't think I have fully accepted the reality of it yet, but I am confident it was the right decision for me.  THANKS so MUCH to everyone on the site for your stories, your knowledge and your compassion.  I have lived here for six months and can't imagine how I would have come to any decsion without everyone here.  Also, I know it will be great to have you guys with me for the surgery and recovery!

So, off to LA I will go - my husband turns 50 in November, so I've told him this is a birthday trip for him :D.  Hope to at least go get a glimpse of the Pacific while out there.  David, Nancy L, I may be in touch with you guys for info!

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

leapyrtwins

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Re: Sugery it is...gulp
« Reply #1 on: August 30, 2008, 07:28:10 pm »
Cindy -

congratulations on making your treatment decision, which can be one of the hardest parts of an AN journey.

Remain confident in your decision and you will do fine.  House has a very good reputation.

Don't forget to put your big day on the AN calendar.

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

JerseyGirl2

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Re: Sugery it is...gulp
« Reply #2 on: August 30, 2008, 08:22:49 pm »
Cindy,

I think you've made a great decision ... but I'm a bit prejudiced since I also opted for surgery at House. I live in New Jersey and had Translab (Drs. House, Schwartz, Wilkenson, Stefan) in early January of this year; would go there again in a heartbeat. I had my BAHA implant done at the same time and have been enjoying my Intenso for several months now. I was fortunate in that my only symptom pre-surgery was hearing loss (my AN was small, but had relentlessly and very gradually zapped my hearing over the years -- also my balance, so that I had no dizziness, nausea, or balance issues either pre- or post-surgery). My husband and I flew out the weekend before surgery so that we could do as much sightseeing as possible (an excellent distraction for upcoming surgery) and I felt well enough after my release to Seton Hall (the dorm/hotel adajcent to the hospital and right across the street from House Clinic -- heartily recommended) that we were able to fit in additional sightseeing (though less strenuous than pre-surgery!) before flying back East. Best wishes as your surgery date approaches, and please feel free to PM me if I can help with any information.

JerseyGirl2
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

NL

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Re: Sugery it is...gulp
« Reply #3 on: August 30, 2008, 09:41:29 pm »
Hi Cindy,

I hope you're starting to feel some of the relief that comes with making a decision! With the Nov. 7th date, you've got plenty of time to ease into your decision. For me that waiting period was a good thing - it gave me the opportunity to talk to many others who had been treated by the same team and filled me with even more confidence that I had made the right choice. (And at 3 1/2 weeks post-op, I know I did.)

I had a wonderful experience with Dr. Friedman, Dr. Schwartz (neurosurgeon), Dr. Stefan (internist) and the entire hospital staff at St. Vincent's, where the sixth floor is pretty much devoted to House acoustic neuroma patients. In the month or so before my surgery, Dr. Friedman always responded to my many questions by phone or email within 24 hours, as did Dr. Schwartz, as well.

Kathleen5306 also had a translab with Dr. Friedman a week before me, so you might also want to talk to her if you haven't already. And feel free to PM me any time.
 
And I agree with JerseyGirl2 that you should come out a little early to enjoy the sights and celebrate your hubby's b-day. :)

Congrats on having the stressful decision-making phase behind you,

Nancy L
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

wendysig

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Re: Sugery it is...gulp
« Reply #4 on: August 30, 2008, 11:08:17 pm »
Hi Cindy

Congratulations of reaaching a decision on treatment.  I think everyone will agree it is the second hardest part of having an AN, the hardest part being the initial  diagosis.  I'm sure you are still nervous and will have many more questions, but that is just part of the process.  November 7 may seem far away but it will be here before  you know it and you'll; be a postie and on the road to  recovery.

Best wishes,
Wendy
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!

Kathleen5306

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Re: Sugery it is...gulp
« Reply #5 on: August 31, 2008, 04:58:04 am »
Cindy

Making the decision is the hardest part.  You have done your research, evaluated your options and now you can focus on healing you!  I, too, had Dr. Friedman and Dr. Schwartz and Dr. Stefan at House for a translab 4 weeks ago on July 30.  My expereince personally and surgically was extraordinary!  I was very comfortable and confident with the entire team that treated my Acoustic Neuroma.  I live in Denver ,and it sounds like you are out of town as well.  We had a room at Seton Hall which we stayed in the night before my surgery and then my husband stayed in while I was in the hospital.  The proximity, ease of parking and accomodations make it very helpful.  I would recommend booking a room there soon.  After I was released from the hospital, I went there to recover for a few days.  It was nice to be right next to the hospital and doctors for peace of mind.  We had booked a hotel in the LA area for the next phase of recovery (which LADavid had recommended), but I ended up not needing it and got sent back to Denver.  My husband and I will go back and enjoy at some future time, but I wanted to get home to my three children as soon as possible.  Feel free to PM me if you have any questions or want more details.  I will gladly share anything with you that will make your experience easier.

Kathleen
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

hruss

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Re: Sugery it is...gulp
« Reply #6 on: August 31, 2008, 10:00:27 am »
Cindy,

I am in the process of making a decision (I am just waiting for a reply from another doctor) and I am almost ready to schedule a surgery at HEI around mid- November.

My final decision will be made at the end of September, though!

It might turn out that we would meet at Seaton Hall!

I am so glad that this first phase is behind of you - it is relaxing, isn't it?  ;)

Best wishes,
Hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

sgerrard

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Re: Sugery it is...gulp
« Reply #7 on: August 31, 2008, 06:10:57 pm »
Yet, oddly, I think I've known for weeks what I was going to choose.

That's a good sign. It sounds to me like you have found the right decision for you. Congratulations!

It is also pretty clear from the other posts that you are in good company, and that lots of support is headed your way. I'm not sure it is exactly what your husband wanted for his 50th birthday, but at least it is an unusual gift. :)

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.

cindyj

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Re: Sugery it is...gulp
« Reply #8 on: August 31, 2008, 07:23:01 pm »
Thanks everyone!  So nice to have your support...it really does help.  Good to have the input from you House veterans and I'm sure I'll be in touch with you.  Yes, I plan to stay at the Seton House while there.  Hopefully, I can leave a bit early like you did, Kathleen!  I'm waiting til November so that I can still do the Breast Cancer 3-Day Walk again this year.  I committed to it before I knew about the AN and I think the training will keep me busy and focused on something other than the surgery.

I now believe what so many of you say here, that the decision is the toughest part.  It is SO nice to not be thinking about which treatment to choose.  Even though I didn't really talk about it much, I don't think I realized how much I was thinking about it.  Now, I can just focus on getting prepared for surgery and recovery.  Again, I am so grateful to all who have shared their stories so that I know what I can reasonably expect. 

Hrissy, would be great to run into you out there!  Good luck with your decision.

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

Dog Lover

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Re: Sugery it is...gulp
« Reply #9 on: August 31, 2008, 08:06:43 pm »
I had about 2 months between the time that I decided to do surgery and the surgery date. I was SO freaked out between the time that I was first diagnosed and when made my decision. I decided to not think about is as much as possible and go on my vacation etc for about a month and a half. About 3 weeks before my surgery date, I think tried to think of it as little as possible. Even though I say this, I think that in the back of my mind I was really thinking about it. To the morning that I drove to the hospital I tried to think positive things. I was able to overcome things that at first bothered my, like my hair being cut, the nauscous that I was sure I'd deal with (based on another surgery a few years ago) etc.

I think everyone is right. Making the decision is the hardest part. Good luck with your surgery in Nov.

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

ppearl214

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Re: Sugery it is...gulp
« Reply #10 on: September 01, 2008, 06:50:24 am »
*runs in to give Cindy a major huggle* :-*

Congrats hun! Done deal! I'm so glad that process is off of you now and I know you are in fab hands with "cutie patootie Friedman" (as Captn Deb calls him)!  You know you have my 200% support and will be cheering you on!  Bloke sends his wishes as well. Have you let Bruce know? I'm sure he'll be interested as well!

Onward and upward now.... let's get that brain booger out!

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

Debbi

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Re: Sugery it is...gulp
« Reply #11 on: September 01, 2008, 04:40:45 pm »
Cindy-

So glad you have the decision part of this behind you.  Hopefullyl you can relax a bit over the next couple of months - that being said, you will probalby have some ups and downs along the way which is perfectly normal.   ;)  You've picked an excellent medical team, and that is so important to peace of mind.  Take some time to do some fun things for yourself between now and November
Debbi, sending you warm wishes
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

cindyj

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Re: Sugery it is...gulp
« Reply #12 on: September 01, 2008, 05:54:01 pm »
You are ALL so great!  I'm feeling more confident each day, thanks to ya'll!

Hope everyone enjoyed the Labor Day weekend - I spent MUCH of mine watching the US Open - great tennis!

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

ppearl214

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Re: Sugery it is...gulp
« Reply #13 on: September 01, 2008, 06:40:07 pm »

Hope everyone enjoyed the Labor Day weekend - I spent MUCH of mine watching the US Open - great tennis!

Cindy

cindy, my boss attends every year... he's enroute back to Boston now from the open.... will get the updates from him... and again, congrats! :)

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

cindyj

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Re: Sugery it is...gulp
« Reply #14 on: September 02, 2008, 06:13:17 pm »
Phyl, I would so like to go to the Open one year...actually, I'd really, really like to go to Wimbeldon.  Think I could bunk with some of your friends or relatives?
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