Author Topic: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti  (Read 21948 times)

millie

  • Sr. Member
  • ****
  • Posts: 423
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #30 on: January 24, 2013, 06:21:27 pm »
Passing time was tough in the beginning.  I prayed a lot and squinted at the t.v. with one eye. Slowly imperceptively the healing occurs.  Then you might be able to read  the papers a little.  Rest  and let yourself nap whenever you are tired. I hope you have someone to help you.

rachelnyc

  • New Member
  • *
  • Posts: 20
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #31 on: January 27, 2013, 04:33:44 pm »
Thanks all

Yes I have great help for my daughter and lots of support from family and friends.

I'm tired a lot and my facial weakness was totally unexpected ( my surgeons said that That nerve wouldn't be affected since the tumor was in another direction). When they went in, it was another story. So I'm coping with e loss of my left side hearing, the facial weakness, and I'm pretty unsteady. My family pushes me to walk every day but I get pretty winded. I have to use drops in my left eye all they time to prevent dryness and I tape it shut before bed.

I want to return to myself so bad and though I realize time is the only thing that will help I can't help but wonder if there are certain things I can do( exercise or diet wise) I can do to repair my nerves.
Also the tightness on my skull- does that go away?

Last night I had my young neice and nephews over. It was so loud and difficult for me. My fullness and tinnitus semed to get worse. I wonder if i will always feel like this in the presence of many people And loudd noise or was it just because I'm in my early recovery?

R
Left AN 2.5 cm
4 sudden hearing loss episodes with fullness and dizziness since 2008
Retrosigmoid 1/9/13 NYU Golfinos & Roland
Complete tumor removal but have SSD, facial palsy, external eye-lid weight (Blink-eze)

millie

  • Sr. Member
  • ****
  • Posts: 423
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #32 on: January 27, 2013, 08:00:10 pm »
I think it is VERY early in your recovery.  I can remember I was so happy my grandkids came to visit the week I came home (they are 3,5,5, and 6) but I found I really  relished quiet.  I t really was such an effort to converse and  interact and walk  about to the den and the kitchen table -especially with the eye and the full head that is still pretty numb. And then our faces are crooked (mine is 80 per cent back now)  Of course everyone encourages you to walk and eat and nap, but listen to your body and when tired or maxed out mentally go to bed.  (The week after I came home Hurricane Sandy struck and we were without power!  But we survived!!)
 I am three months out (I am also 65 but in good shape) and just getting around to driving ...when in a store, I start to feel tired-I think it is the fullheadedness, or "weight" or "wonkiness" or pressure but I hope that gets better.  I have been told I will get better and better.   Like you, the doctors thought one thing going in, and then when they get in there, they can really see what is going on.  But they said I would get better and I am.  It is definitely better than one or two months ago.
Please give yourself time and nurture yourself.
Best wishes.
Mil

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #33 on: January 28, 2013, 11:48:01 am »
Dear Rachel,

You chose your  Docs well I see! Good for you. It helps to have patience though your facial function as long as they didn't cut it should return shortly. Although, it happened in 2004 for me (debulking surgery) my facial function returned in approximately 3 weeks, as I remember.

Do as much as you feel comfortable doing, take it easy on yourself. Remember, you just had brain surgery. Short periods of activity with plenty of naps work best.

If you build up little by little your activity level you will find that you don't get tired as easily, consequently, you'll nap less.

Take care!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Chances3

  • Sr. Member
  • ****
  • Posts: 266
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #34 on: January 28, 2013, 12:18:07 pm »
Rachel,

It's gets better sweetie - hang in there.  Take walks, and take rest, they go hand in hand.  All the fuzzy stuff will dissipate, but it does take time.

Regards,

Bob

dtorres135

  • New Member
  • *
  • Posts: 42
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #35 on: January 28, 2013, 12:59:51 pm »
Rachel

Hang in there.  Of all I have read, recovery takes time.  That's what i would need to understand as well.

rachelnyc

  • New Member
  • *
  • Posts: 20
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #36 on: January 31, 2013, 08:26:25 am »
Thanks everyone

I'm walking and reminding myself of all your advice: patience and time. :)
Left AN 2.5 cm
4 sudden hearing loss episodes with fullness and dizziness since 2008
Retrosigmoid 1/9/13 NYU Golfinos & Roland
Complete tumor removal but have SSD, facial palsy, external eye-lid weight (Blink-eze)

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #37 on: February 04, 2013, 12:44:25 pm »
Dear Rachel,

As Jan says you should let your heart,your head and your gut make your decisions for you. That is what should guide everyone when making an initial choice of doctor ( be it surgeon or GP). That is what drives quality, essentially! Good choice by the way! Dr. Golfinos was in my top 3 contenders!

Mike

PS a little help from God as well!

 
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

v357139

  • Sr. Member
  • ****
  • Posts: 482
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #38 on: February 07, 2013, 11:52:05 am »
For those who used Roland/Golfinos, how did it go?  Any problems?  Did they have to peel any off the facial nerve?  Was it sticky?  Did any of you have hearing saved with retrosigmoid?  Did they get it all out?
« Last Edit: February 07, 2013, 12:48:52 pm by Jim Scott »
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Shirley48

  • New Member
  • *
  • Posts: 14
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #39 on: February 08, 2013, 07:27:47 pm »
Hi, yes, I had retrosigmoid Surgery with Drs.Roland and Golfinos in July. They were able to save almost all my hearing. However, they did need to cut the vestibular nerve since it was already badly damaged. Just had my six month check-up and everything looks good.  My AN was not the sticky type so that helped, and it was quite small.  I have been very pleased with the doctors and highly recommend them.
1 cm AN removed July 2012
Retrosigmoid surgery
Vestibular nerve cut
65 years old
Summit, NJ

millie

  • Sr. Member
  • ****
  • Posts: 423
Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #40 on: February 18, 2013, 09:16:35 pm »
Mine was sticky and adhering to some nerve(I guess facial but I am forgetting now-I need to read the surgical report ) but as the doctor picked at it it came up pretty nicely my husband says. I was told I should get my face back and most of it is back, just a little crooked smile and the eye which doesn't blink quite in sync with the other-still using drops...  Trans lab left me deaf in the an ear-I went in with 40 per cent hearing, and after the surgery I noticed the difference.  I am acclimating. I do feel better than four months ago(surgery was 10/17.) The first days and weeks after surgery were more challenging than I expected. Doctors said they got it all and I have an MRI in October. I think I had excellent doctors.
I am hopeful and feel fortunate.
Hope that helps.  Mil

 


anything