Author Topic: One week 'til I'm rid of Lefty, that jerk.  (Read 34850 times)

Pajamas

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One week 'til I'm rid of Lefty, that jerk.
« on: October 31, 2012, 07:00:15 pm »
In exactly one week, Nov 7, I'll be having my AN removed at UCLA. Nervous, frightened, worried about people seeing me afterward since I won't look like myself. I've got an OVERWHELMING amount of support and everyone wants to come visit me. I'm scared.
I know they love me and accept me for who I am but I'm terrified of the partial facial paralysis.
My friends and family are throwing me a big party the night before surgery, last supper sort of deal. I'm so grateful, and grateful for everyone here.

Jamie
Irvine, CA ~ Female ~ 32
10mm x 5mm x 6mm AN Left Side
Diagnosed: 9/19/12
Removed: 11/7/12
* Retrosigmoid Endoscopic w/Dr. John Frazee @ UCLA

It is what it is

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #1 on: October 31, 2012, 07:37:20 pm »
You will be in my thoughts and prayers.  It is wonderful to hear you have such wonderful support!!!  I also had a small tumor removed (at HEI with middle fossa surgery in order to try to preserve my hearing).  As soon as I could comb hair over the staples (which was within the next couple days), no one could tell I just had brain surgery, especially if I held on to someone's arm while I walked.  Feel free to ask any questions you may have.  There are so many great people on this discussion list.

karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Sheila1977

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #2 on: October 31, 2012, 08:32:56 pm »
Keeping you in prayer.  We will be waiting to hear how well you are doing post op.
s

p.s. also in OC
post op translab on 9/12/12
7mm AN June 2011
Almost doubled in July 2012
Translab Sep 2012 at Kaiser San Diego

It is what it is

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #3 on: October 31, 2012, 08:53:35 pm »
We will also be waiting to hear from you as well Sheila.  Supportive thoughts for you both. 

karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

kmr1969

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #4 on: November 01, 2012, 10:57:38 am »
Jamie,

Best thoughts to you for your upcoming big day.   It sounds like you have a big cheering section behind you, and you are right - they will love you no matter what.

Try not to assume the worst or to focus on the negative 'what ifs'.  I know that is easier said than done as I am scheduled for surgery at HEI on 11/13, and I am experiencing a lot of anxiety over the surgery and the recovery.

Your tumor is on the smaller side and I would think that you could expect excellent results from your doctors.

Keep thinking good thoughts and then enjoy your pre-surgery party.

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

Jim Scott

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #5 on: November 01, 2012, 12:57:24 pm »
Hi, Jamie ~

Please try to hold a positive attitude going into surgery.  With all the support you have, this shouldn't be too difficult.  I underwent debulking surgery for a large (4.5 cm) AN then had 26 FSR treatments and came through it all with no facial paralysis or other complications...and I was almost twice your age at the time.  That was six years ago and today I'm doing great!  You'll do fine too.  Besides, you have youth on your side along with the thoughts and prayers of many, including me.  :)

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.

LakeErie

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #6 on: November 01, 2012, 01:42:53 pm »
Jamie, Concern is normal, but an experienced surgeon can often remove smaller tumors with no complications. Nerves can be irritated and/or swell, but most facial weakness, if any, is temporary. I had a large tumor like Jim did and was House-Brackmann scale 2 after surgery. # 1 on that scale is normal function. I was back to # 1 by the time I had the incision stitches removed, about 10 days. While the weakness was resolving, no one who saw me noticed anything. I also had a CSF leak that eventually resolved on its own, no medical intervention was required at all. It's nice so many people want to see you after surgery, but remember that fatigue is often part of initial recovery. Often  the recovery is more demanding than the surgery. Give yourself time to begin a real a recovery. Many AN sites refer to "survivor's euphoria, " which amounts to so much relief the procedure is over, that we initially feel better than we do later. Good luck.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

skipg

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #7 on: November 02, 2012, 08:22:39 am »
Jamie,
You will do fine. When I had my AVM surgery in 1989, I also had a party the night before. Sounds like you are already off to a great recovery even before your surgery. Concern is a natural reaction but try to not let it turn into worry. Many friends are praying for you. Keep us updated on your upcoming remarkable recovery. Keeping you in my prayers.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

Pajamas

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #8 on: November 02, 2012, 12:35:13 pm »
Thanks everyone for your kind words of encouragement. Moving in with my mom tomorrow temporarily so she can watch me after surgery. Oyeeeee. I wonder, how long do you think I'll live there? She's awesome and a huge help but, you know, I much better like my own apartment and my own life!

I am feeling much better these last few days after reading all of your comments. I've got the PMA!
Irvine, CA ~ Female ~ 32
10mm x 5mm x 6mm AN Left Side
Diagnosed: 9/19/12
Removed: 11/7/12
* Retrosigmoid Endoscopic w/Dr. John Frazee @ UCLA

It is what it is

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #9 on: November 02, 2012, 12:51:33 pm »
I was glad to have my husband help take care of things for the first month so I could rest and concentrate on healing.  I understand your desire for independence and I'm glad to hear you have your mom's support for as long as you need her. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Jim Scott

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #10 on: November 02, 2012, 02:49:45 pm »
Thanks everyone for your kind words of encouragement. Moving in with my mom tomorrow temporarily so she can watch me after surgery. Oyeeeee. I wonder, how long do you think I'll live there? She's awesome and a huge help but, you know, I much better like my own apartment and my own life!

I am feeling much better these last few days after reading all of your comments. I've got the PMA!

Jamie ~

Realistically, your period of convalescence could be a few days or a few weeks.  I was driving again within a fortnight of my surgery and taking fairly long walks (accompanied by my wife) within a week after my hospital discharge.  However, some AN surgery patients just need longer to recover.  As you can see, everyone has a slightly different experience.  I suspect that your recovery (and need to live at mom's house) will be relatively brief. 

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.

kmr1969

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #11 on: November 06, 2012, 04:08:32 pm »
Jaime,

Good luck tomorrow.  I will say a prayer for you tonight.  I have no doubt that you are going to do great.

Best wishes,

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

millie

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #12 on: November 06, 2012, 08:03:16 pm »
Praying for you Jaime.  Millie

Pajamas

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #13 on: November 06, 2012, 11:48:20 pm »
Thanks everyone. I'll be under the knife in less than twelve hours. My heart races and my eyes well with tears when I think about it. Your support means everything.

Jamie
Irvine, CA ~ Female ~ 32
10mm x 5mm x 6mm AN Left Side
Diagnosed: 9/19/12
Removed: 11/7/12
* Retrosigmoid Endoscopic w/Dr. John Frazee @ UCLA

Pattiken

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #14 on: November 07, 2012, 12:52:53 am »
Hi Jamie,
Sounds like a lot of fun people are in your corner!  Your 'tumah' is small and as I've been told, they are the easier ones to remove.  I will be praying and thinking positive thoughts for a successful outcome on November 7th.   You're young and strong and will be looking and feeling great in no time!
I'm scheduled at HEI for middle fossa on the 11/14 and I look forward to hearing about how you're doing. 
Keep strong and positive,

Patti