Author Topic: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's  (Read 15626 times)

NL

  • Sr. Member
  • ****
  • Posts: 251
Hello All,

I have been wanting to get on the forum and post since I got home Sunday from my retro at House/St. Vincent's on Wednesday, August 6th, but I have not yet refined the post-op skill of timing activities between nap attacks. (Though I knew to expect it thanks to the forum!)

I just want to say thank you to everyone for prayers, good thougths, and support! I also want to say thank you everyone who has ever written ANYTHING on this forum...the wealth of knowledge available by people sharing their research and experiences is amazing, and is what has led me to all the right decisions (and doctors) since my diagnosis in October 2007.

I went into surgery feeling so relaxed and confident in my choice, and with great relief at finally "handing over" this burden I'd been carrying to my trusted doctors. Someone asked as me as I was being moved from the pre-op waiting area up to the OR floor if I had been given any drugs to calm me down like valium. I hadn't, I just felt such a calm, serene sense of being at the right place at the right time. (Which I would not have felt had I done the surgery when I discovered the tumor!)

After a 4 1/2 hour retrosigmoid surgery to remove my approximately 2 cm tumor, I opened my eyes and immediately heard Dr. Stefan (the internist) tell me the tumor was out. I asked if I was already in ICU, which I was. Feeling my face move and not in any pain, I was actually elated at how good I felt. I found it hard to believe that the operation had already taken place (after all it seemed I had only closed my eyes for ten minutes), but I could see the clock on the wall and knew that it was over.

The anesthesiologist later told me that I had actually woken up a few minutes before my first recollection, and had been repeating, "Is it over? I can't believe it!" like a broken record.

Even through the first stretch of ICU, I remember thinking that the most bothersome thing was being uncomfortable because you are hooked up to so many gadgets, and INCREDIBLY thirsty! But thanks to those who'd been down this road, I knew soon there'd be ice chips on the way! Even though it seemed like an awfully long time before they arrived, I was aware that having them too soon causes severe nausea. And the only nausea I recall was about the same feeling as having a strong cup of coffee on an empty stomach, it wasn't bad at all. I wasn't dizzy and I could focus my eyes, and I was so thankful lying there that I had this mental "checklist" of items to go through and assess from all I learned on this forum.

I can honestly say that the only true surprises to this whole experience was that I did so well. And again, knowing all the possible reactions to surgery made me really appreciate how well I felt. When the physical therapist came by to walk me on Friday, he said I was fine and that I didn't need to see him again, just to keep walking with family members - I was surpised but very happily. I had learned from someone on the forum that doing balance exercises in the weeks prior to surgery had helped her - I did them right up until pre-op in my hospital gown. (And it was very liberating to feel that maybe for the first time in my life, I honestly did not care what anyone might think looking at me!)

Hearing wise, there is not much going on in the AN ear - I know that my hearing nerve was stretched fairly thin by the tumor, even though the nerve is intact. But maybe things will improve with time - and if not, I am so happy with my results that at the moment I really don't care. I know (thanks again forum members) of great experiences with BAHA and Transear if I need them.

So for the time being I'm eating, sleeping, and watching the Olympics...life could be a whole lot worse.

Thanks so much to David and Kathleen (six days after her translab!) for spending time with me the day before my surgery and your wonderful reassurances - I took them with me on Wednesday. Thanks also to Lainie and Jean for your great support. And of course, thanks to my wonderful and talented surgical team of Dr. Rick Friedman and Dr. Marc Schwartz.

Congratulations also to Sue L on her successful retro on the morning of 8/6!

This is a wonderful group, and I'll stay in touch.

All the best,

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

MAlegant

  • Hero Member
  • *****
  • Posts: 1295
  • 50th birthday party pic
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #1 on: August 11, 2008, 06:13:29 pm »
Congratulations Nancy L.-- you sound great!  Heal well.
All best,
Marci
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.

bunny

  • New Member
  • *
  • Posts: 4
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #2 on: August 11, 2008, 06:30:25 pm »
Congartz Nancy, 

My tumor is also 2cm, Is good to hear that your fighting journey is finaly over ( at least almost over).....For myself.I am still in a super worring stage, I don't know where to go for surgery, haven't decided who will be my doctor, and i am even worrying about the cost of the treatment........I wish things will get better and better....

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #3 on: August 11, 2008, 10:54:11 pm »
Hi Nancy,
It sounds like you also had a wonderful surgical  outcome  -- I am so happy for you!  My surgery was a few days before yours but at Mt. Sinai in NYC.  I am very grateful to my doctors who obviously did a wonderful job.  My hearing in my AN ear couldn't be saved and was basically gone before my surgery but I have had a great outcome in every other way too.  I plan to have the surgery for BAHA as soon as possible and look forward to being able to hear well again.  I wish you an  uneventful and quick recovery.  Remember to listen to your body, it will tell you what you need to do.  For now, rest and let yourself be pampered/

Wishing you all good things,
Wendy

Hi Bunny.
Welcome to this forum.  I'm sorry to know that the fact that you have an AN is what brought you here, but you came to the right place.  We are all here to help and support one another and I'm sure you will find this forum a wonderful source of information and comfort.   If I can help in any way, plese PM me.

Wendy

P.S.  Mamcy - Sorry for the hijack
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!

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #4 on: August 11, 2008, 11:39:56 pm »
Welcome back, postie Nancy. Sounds like you did great. Now take some more naps.

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.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #5 on: August 12, 2008, 04:36:58 am »
Nancy,

Great to see you back! Wellness wishes and a speedy recovery to you! Onward and upward!

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

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #6 on: August 12, 2008, 08:21:43 am »
Hi, Nancy:

Your post makes my day!  I'm so pleased that you're willing and able to get on the computer and post here.  :)

Frankly, with only a few minor differences, your surgery experience mirrors mine.  Successful - with no real complications, a relatively brief hospital stay and so on.  I'm also glad to learn that this site/forums were such a great help to you.   

Enjoy the rest - and the Olympics.  Isn't Michael Phelps awesome?  The Men's Gymnastic team also were amazing, all things considered.

Have a smooth and rapid recovery, Nancy. :)

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.

cindyj

  • Hero Member
  • *****
  • Posts: 1434
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #7 on: August 12, 2008, 10:33:15 am »
So glad to hear from you and that everything went so well! 

Get your rest  - it's great that you have the Olympics to watch in your recovery time. 

Stay in touch to let us know that you are continuing to do well,

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

hruss

  • Full Member
  • ***
  • Posts: 203
  • young and cheerful!
    • I made this group to help others!! (the group is in Bulgarian and in English)
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #8 on: August 12, 2008, 11:56:02 am »
bravo Nancy L,

you did it!! your post sounds like the whole process was a fairy tale with a happy ending!  :D

now is time for full recovery - slow and smooth!

Best,
Hrissy

P.S. what is your favorite team on the Olympics?
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

Syl

  • Hero Member
  • *****
  • Posts: 765
  • Forgive me. I'm having an AN moment.
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #9 on: August 12, 2008, 12:32:25 pm »
Nancy L

Glad you're home and resting. This forum is amazing! It also helped prepare me for the many risks and possible outcomes post-surgery. It helps give the healing process a good jump-start.

I look forward to updates on your progress.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

LADavid

  • Hero Member
  • *****
  • Posts: 940
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #10 on: August 12, 2008, 03:12:29 pm »
Awesome, Nancy.  Just awesome.  I am so glad we could all be there for you (that's what this is all about) and I am so glad things turned out the way they did.  And it was a thrill for me to meet you and Kathleen.  I've never met any ANers before.  BTW, I don't know if you heard, Kathleen was sent home the next day -- didn't even have to do an R&R in Dana Point.  Ill write to you soon.  Enjoy the Olympics -- I sure am.

David
PS Please do thank Greg for the call.
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #11 on: August 12, 2008, 05:34:46 pm »
Nancy-

I've been away for a couple of days, so was thrilled to see your post when I got home this evening!  It is SO good to hear of all the successful surgeries lately - makes me feel good just reading about it!  I hope that your recovery continues to go smoothly and that you feel better with each day that passes. 

hugs and warmest wishes,
Debbi

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

NL

  • Sr. Member
  • ****
  • Posts: 251
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #12 on: August 13, 2008, 10:05:37 am »
Hi Everyone,

Thanks for all your replies and warm wishes.

It feels great to be able to participate in this forum as a "postie." I spent so much of the last 8 months or so obsessed with reading, researching, and basically wearing out the search function -  and I can now appreciate the forum in a whole, new (and relaxed) way. Having people to share the experience of recovery with is such a blessing. So here's a quick update.

I always appreciated the concept of mind over body, but I'm realizing my body seems to have the final say right now. The first few days at home were fairly uneventful. I even managed to take a slow walk to the end of the block with Greg ready to go for the car if I needed a ride back.

Then yesterday I became completely humbled by the power of fatigue. I had a very short "to-do" list of making 2 calls and sending 2 emails - I never made it that far. My cousin came by to visit for a couple of hours, and though all we did was talk, when he left I had to go to bed for the rest of the day.

So I'll continue to comply with my body's demands, but just wanted to check in and say hello and thanks.

Nancy L

Bunny - You've found a good place to begin your AN journey with people who will be here to help you through. If you haven't already contacted the Acoustic Neuroma Association for their patient info packets, that's also a great place to start.
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

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #13 on: August 13, 2008, 02:55:14 pm »
Hi Nancy-

Oh how well I remember those first few encounters with fatigue!  I remember thinking before surgery - how bad can it be?  And then I got to experience it!  I am happy to tell you, though, that it does get better.  In the meantime, take lots of naps and don't try to be a hero - when you're tired, just say so and go to right to bed!   ;D

Hugs,
Debbi
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

MAlegant

  • Hero Member
  • *****
  • Posts: 1295
  • 50th birthday party pic
Re: Nancy L - home after 8/6 retro at House Clinic / St. Vincent's
« Reply #14 on: August 13, 2008, 05:43:13 pm »
Visiting with people can be exhausting.  I don't know why just sitting around talking takes so much energy but it does.  I have my husband on the 20 minute plan.  After 20 minutes he tells people that they have to leave so I can nap!  Nancy, it's great that you were already out for a walk.  Keep it up and be good to yourself.
Marci
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.