Author Topic: Got a date!  (Read 5896 times)

Puppylove

  • New Member
  • *
  • Posts: 26
Got a date!
« on: December 17, 2010, 12:36:11 am »
I have a surgery date schedule for Jan. 12th with Dr. Friedman and Dr. Schwartz at House.  It is really weird, but I'm actually kind of excited to finally have an end in sight.  Who gets excited about brain surgery? :-\  Dr. Friedman started me on prednisone a week ago, which has substantially improved my hearing in my left (AN) ear.  I am having the retrosig surgery in hopes of preserving my hearing at its new improved level.  Dr. Friedman is giving it a 40% chance of working, but I am extremely hopeful. 

A month ago when I came here and read how much relief I would feel once I had a decision made, I could not have known "how much" of a relief I would "really" have.  It's amazing!  I know as the time grows closer, I will start to get more nervous, but for now I couldn't be happier.  I have my bounce back in my step and I'm ready to get this all behind me.

Question for those who had surgery at St. Vincents...do you know if my kids (3 yrs old and 16 month old) will be able to visit me in the hospital once I'm out of ICU?  Laurie, at House, wasn't sure, but I don't want to go 4 days without seeing my babies :(

I'm sure I'll have more questions as the time gets closer, but for now I just had to share my good news! ;D

Thanks to you all for all of your support.  I really would not have made it through the first few weeks without this discussion group and reading that there really is life after this tumor.  You all are wonderful, even for those of us that lurk more than post!  ;)
Diagnosed with AN on left side 11/5/10. The              
approximate dimensions are 14 mm AP x 18 mm TR x 15 mm CC.
Retrosig surgery w/ Dr. Friedman/Dr. Schwartz at HEI on 1/12/11. Entire tumor removed with no facial weakness.
BAHA surgery 3/29/11

Mark241

  • Full Member
  • ***
  • Posts: 131
Re: Got a date!
« Reply #1 on: December 17, 2010, 01:17:21 am »
Glad your looking forward to it, attitude helps' more than people realize. I remember being glad in a wierd way also, I didn't want that dang thing in my head, the worry was way worse than any of my surgeries. Can't really help ya with the other questions, good luck, and keep up the "Get it outta me" attitude!


4cm C1  16hrs                 Barrows, Jan 06      NF2
3.5 cm  Right AN retro       Barrows, Oct 06   
Cranial Plate removal           UNM Nov 07
LP                                   Barrows  Jan,2011
Wound revision                 Barrows Feb, 2011
5mm left middle Fossa,  (2) 2mm spine w&w

luvzmutt

  • New Member
  • *
  • Posts: 44
Re: Got a date!
« Reply #2 on: December 17, 2010, 09:14:23 am »
Congratulations on your surgery date.  I'm still waiting for my second MRI on January 10th before I decide to continue to W/W or schedule surgery. 
Right side AN diagnosed 7/10 - 6.1 mm x 7.8 mm
1st follow-up MRI 1/10/11 - 0.9 x 0.3 x 0.4 cm
2nd follow-up MRI 7/11/11 - 1.0 x 0.7 x 0.6 cm
Follow-Up 12/20/11 - no noticeable change
MRI 11/26/12 - .5x1.0x.6 cm
MRI 10//21/13 - 0.8 x 1.0 x 0.7
Some hearing loss AN side and tinnitus
NF1 & optic glioma

CHD63

  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: Got a date!
« Reply #3 on: December 17, 2010, 09:20:03 am »
Hi Debbie .....

So glad you have made your decision for treatment ..... what a relief to know both the what and the when!  Dr. Friedman and Dr. Schwartz have excellent reputations so you are in good hands!

I did not go to House so I cannot answer your question about your kids visiting during your hospital stay.  I went to Duke Raleigh Hospital in North Carolina where I had a private room.  Amazingly they allowed my niece to bring her two elementary school aged children into see me in the ICU ..... not my choice and I would not recommend that!  If they do allow your kids in your room, I would make sure they were not sick with any little viruses, colds, etc.  You do not need that during recovery.  The first 24 hours are a big blur and then you should experience rapid recovery so the time will pass quickly, especially if you have their pictures with you and maybe even talk with the 3 year-old on the phone.

It doesn't seem to be working right at the moment, but if you put your surgery on the AN calendar (see link in my signature below), it helps the rest of us remember your surgery date.

Many thoughts and prayers as you enjoy the holidays while you are getting ready for surgery on the 12th.

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

cindyj

  • Hero Member
  • *****
  • Posts: 1434
Re: Got a date!
« Reply #4 on: December 17, 2010, 01:18:13 pm »
Congrats on setting your date!  It is such a relief...you are going to be in wonderful hands...while I don't know for sure whether or not your children will be allowed in, my guess is that they will.  St. Vincent's is a small hospital with a VERY intimate atmosphere and the floor you will be on will be predominantly AN patients.  The staff is awesome, so if there's any way they can let them in, they will!  Feel free to PM me if you'd like to talk to me about my LA experience - I'd be glad to give you my number.  Are you all going to be staying at Seton? 

Best to you!

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

Puppylove

  • New Member
  • *
  • Posts: 26
Re: Got a date!
« Reply #5 on: December 17, 2010, 02:19:36 pm »
Thank you. I've added the date to the calendar, thank you Clarice.  Cindy, probably won't be staying at Seton since we live so close. It's good to know the option is there, especially if my husband decides to stay instead of dealing with the wonderful LA traffic.  :P

One thing I have been trying to search for and am having no luck is: I saw something about exercising before surgery regarding balance.  I don't really have bad balance problems now, but I do get the wonkey head and I do drift or lose a little balance occasionally.  Does anyone know the exercises that I can start now? or what should I search for? 
Diagnosed with AN on left side 11/5/10. The              
approximate dimensions are 14 mm AP x 18 mm TR x 15 mm CC.
Retrosig surgery w/ Dr. Friedman/Dr. Schwartz at HEI on 1/12/11. Entire tumor removed with no facial weakness.
BAHA surgery 3/29/11

TJ

  • Sr. Member
  • ****
  • Posts: 282
  • 1.2 cm AN right side, CK November 2010
Re: Got a date!
« Reply #6 on: December 17, 2010, 04:47:26 pm »
There are three that come to my head that my doctor gave to me.

1) Stand on one leg with other leg lifted with knee in front of you.  Do this for between 10-20 seconds.  Make sure that you are near something to hold onto if you need.

2)  Stand on one leg with other knee bent so leg is behind you.  Do same amount of time.

4)  Stand on one leg putting the other foot on you calf.  Have your arms extended to help balance do for same amount of time.  This one was the hardest for me.

Hope these help

TJ

Puppylove

  • New Member
  • *
  • Posts: 26
Re: Got a date!
« Reply #7 on: December 17, 2010, 07:47:47 pm »
Thank you TJ.  I will definitely incorporate these into my routines :)
Diagnosed with AN on left side 11/5/10. The              
approximate dimensions are 14 mm AP x 18 mm TR x 15 mm CC.
Retrosig surgery w/ Dr. Friedman/Dr. Schwartz at HEI on 1/12/11. Entire tumor removed with no facial weakness.
BAHA surgery 3/29/11

califgirl

  • New Member
  • *
  • Posts: 6
Re: Got a date!
« Reply #8 on: December 18, 2010, 12:03:36 am »
Hi!

This is my first post - but  I am pretty much at the same Exact place as you.  Today I made an appointment with the House Institute for Feb 23, 2010.  I have chose Dr. Brackmann and team....mainly because I have a close friend who was treated by him 13 years ago.  I am exhausted trying to make this decision and finally move forwad.  I needed to push it into February till my care giver is around to help.  Hopefully all will work out and be successful. 

Congratulations on making the big decision!  I will be following your posts faithfully!!
Robin

Surgery at HEI Feb. 2011.  Only partial removal was accomplished.  Mar 2012 annual MRI shows tumor growing back - almost same original size!

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Got a date!
« Reply #9 on: December 18, 2010, 09:26:14 am »
Good Luck on your near future surgery. Most of the time the hardest part of doing this is to make the decision on what is good for yourself. Your have picked probably one of the top places on earth to have this done. I noticed that balance test posted. Seemed kind of tough. My own balance test consists of playing golf and raquetball. If I can do these well I`m assuming I`m O.K. haha. Once again, Best wishes, Mickey

CHD63

  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: Got a date!
« Reply #10 on: December 18, 2010, 04:21:49 pm »
Debbie .....

Any exercise you can do to strengthen your core muscles will make the balance exercises so much easier and safer after surgery.  Not really sure if vestibular rehab exercises per se are of any value prior to surgery ..... can't hurt, however.

Walking, walking, walking are the very best overall.

Best thoughts.  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

The Beast

  • Newbie
  • *
  • Posts: 2
Re: Got a date!
« Reply #11 on: December 19, 2010, 05:10:35 am »
I'm so glad you decided to !! But you didn't say what your brain surgery is called what type? Would be very interested in hearing more about it? What type of tumor?
Dealing with the brain is so hard I really am glad you decided to take this step!! Best of luck!  All my prayers for you to have a happy and healthy 2011!!!!!!!! ;D 

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Got a date!
« Reply #12 on: December 19, 2010, 12:59:28 pm »
Congratulations, Puppy!

Best wishes for a swift, uneventful surgery and recovery.

I have some vestibular exercises that my neurotologist gave me.  I did them both pre and post op and they helped my balance a lot.

If you are interested in a copy, please PM me your email address.  I have them in a word document and I'll send them to you.

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

ksiwek

  • Full Member
  • ***
  • Posts: 125
Re: Got a date!
« Reply #13 on: December 19, 2010, 10:40:29 pm »
Best of luck...I will be thinking of you...

In answer to your question about your children visiting you...I had my surgery when my baby was 2.5 weeks old.  I didn't see him for the first 3 days (including surgery day).  This was due to me being really out of it!  After that my husband brought my baby to visit me and there weren't any issues.  There is a lounge on the 6th floor where AN families hang out.  There is more room to visit in there...the rooms are small at St V's.  PM me if you want to talk about anything...I just had my surgery this past June.

Enjoy the Holidays!
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)