Author Topic: Newbie please help Sugery on Jan 18th  (Read 5014 times)

Chadly

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Newbie please help Sugery on Jan 18th
« on: December 27, 2012, 12:24:52 am »
Hello,
This website and message board have been very helpful and a breath of fresh air ffor the last month +. On Nov. 23rd I found out that I had a 4 cm AN behind my left ear. I have suboptical sugery at the Cle. Clinic with Dr. Joung Lee on Fri Jan 18th. If someone has the time could theu please share with me any info that would be helpful about ether Cle. Clinic or Dr Lee? I live 2 and a half hour away. thank you for your time in this matter.

Also based on that what is the chance for regrowth with AN tumors and will I have MRI's every year for the rest of my life? These two questions are two that I failed to ask Dr. Lee, I know that this is a broad question so any help with the above would be great.
I you would like to E-mail for privicy that is fine as well.
Godbless  ;)
" It's in his hands"

millie

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Re: Newbie please help Sugery on Jan 18th
« Reply #1 on: December 27, 2012, 06:45:52 pm »
I had translab October 17th and am still on the mend.  The recovery was a little harder than I expected, but I am trying to be patient and hopeful. I have SSD and a fullheaded feeling.
As for frequency of MRI's-I think my ENT is going to order one for end of January, and then in six months, and then a year, and then in five.   I think only 8 percent of an's  grow back.  I may be wrong.  I know I learned this on my an journey  because I did not journal and write everything down like I did when my mom had health issues, and I regret that.
Write down all questions as you think of them and ask what to expect post surgery-although I have been told, too, everyone is very different.  Some folks are driving two weeks after surgery!  I hope you will be one of these.
Best wishes.
Millie

leapyrtwins

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Re: Newbie please help Sugery on Jan 18th
« Reply #2 on: December 27, 2012, 07:33:48 pm »
Welcome to the Forum, Chadly.

I know nothing about Dr. Lee or the Cleveland Clinic (I'm in Illinois) but I wanted to say good luck with your surgery.

I, too, had suboccipital (aka retrosigmoid) and my AN was a little smaller than yours (approx. 3 cms).  My outcome was very good - only permanent "issue" is SSD (single-side deafness) which I've learned to deal with; my BAHA helps.

If your AN is removed entirely, odds are about 1-2% that you will have regrowth.  I was 5 years post op in May 2012 and remain tumor free.

Docs have different protocols when it comes to post-op MRIs.  My neurotologist had me get one annually for the 1st 5 years and since they were all "clean" I don't have to have another until 2017 (my 10 year mark).  All docs are different, so check w/Dr. Lee when you have a chance.

Best,

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

LakeErie

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Re: Newbie please help Sugery on Jan 18th
« Reply #3 on: December 27, 2012, 09:01:33 pm »
I had surgery from Dr Lee on Oct 6, 2011 and am more than satisfied. I had his simplified retrosigmoid approach and spent no time in an ICU, was up walking in my room in less than 24 hours, was discharged in less than 48. Dr Lee is very experienced as he has performed over 600 AN removals and 1000 meningiomas in his 20 years at the Clinic. My surgery was performed through a quarter sized craniectomy and it was closed with a titanium plate.
The Clinic is ranked the 5th, or 6th, best neurosurgery center in the country and Dr Lee performs the skull base surgeries for the Brain Institute there.
I had a subtotal resection of the tumor meaning  3- 5% was left on the facial nerve and brain stem to prevent damage. I had an MRI at one year and it showed "stable residual tumor size." Dr Lee wants me to return for another MRI in 2 years, 2014. I assume the MRI schedule is dependent on each patient's particular situation. If I do have regrowth of the remaining tumor, Dr Lee advised me that Gamma Knife will be the treatment he favors.
I did experience mostly temporary post-surgical problems, but each person's experience is different so comparisons with my situation are not warranted.
I have no reservations about selecting Dr Lee for my surgery, and would do so again if I had to. Good luck
« Last Edit: December 28, 2012, 09:34:19 am by LakeErie »
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

Chadly

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Re: Newbie please help Sugery on Jan 18th
« Reply #4 on: December 28, 2012, 10:59:06 pm »
To all,
Thank you for your up front input and wisdom on my situation. I now know more information that will help me in the future and it givies me more peace of mind with my choice of Dr. Lee and Cle. clinic. As I said before this website has helped my family and I alot. thank you for your well wishes and prayers. I'll try and post any- updates to keep you posted and to be able to help others.  :) Have a blessed New Year
" It's in his hands"

Slab

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Re: Newbie please help Sugery on Jan 18th
« Reply #5 on: January 11, 2013, 09:39:00 am »
I had surgery from Dr Lee on Oct 6, 2011 and am more than satisfied. I had his simplified retrosigmoid approach and spent no time in an ICU, was up walking in my room in less than 24 hours, was discharged in less than 48. Dr Lee is very experienced as he has performed over 600 AN removals and 1000 meningiomas in his 20 years at the Clinic. My surgery was performed through a quarter sized craniectomy and it was closed with a titanium plate.
The Clinic is ranked the 5th, or 6th, best neurosurgery center in the country and Dr Lee performs the skull base surgeries for the Brain Institute there.
I had a subtotal resection of the tumor meaning  3- 5% was left on the facial nerve and brain stem to prevent damage. I had an MRI at one year and it showed "stable residual tumor size." Dr Lee wants me to return for another MRI in 2 years, 2014. I assume the MRI schedule is dependent on each patient's particular situation. If I do have regrowth of the remaining tumor, Dr Lee advised me that Gamma Knife will be the treatment he favors.
I did experience mostly temporary post-surgical problems, but each person's experience is different so comparisons with my situation are not warranted.
I have no reservations about selecting Dr Lee for my surgery, and would do so again if I had to. Good luck

Just wanted to commend you on this post. I'm sure it was very reassuring- I know I felt better for Chadly after reading it.....
10/30/2012 - MRI reveals 3.5 cm AN on left side 
conversation level hearing down to 20%, facial tingling/numbness around lips/nose, occasional loss of balance, and tinnitus
12/3/2012- 12 hr. Translab at Allegheny General in Pittsburgh, PA- Drs. Chen and Aziz, comp. tumor removal, facial nerve saved

MDemisay

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Re: Newbie please help Sugery on Jan 18th
« Reply #6 on: January 17, 2013, 04:06:32 pm »
Dear Chadly,

Good luck tomorrow! Remember to post (when you can)! Good speedy recovery to you!

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!

millie

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Re: Newbie please help Sugery on Jan 18th
« Reply #7 on: January 18, 2013, 09:01:59 am »
Praying for you today, Chadly. Mil

mindyandy

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Re: Newbie please help Sugery on Jan 18th
« Reply #8 on: January 18, 2013, 02:45:40 pm »
Thinking of you today. Let us know your doing well when you are able.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Glenda

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Re: Newbie please help Sugery on Jan 18th
« Reply #9 on: January 19, 2013, 05:40:28 pm »
Hi Chadly,

Watching for a postie update from you.  Praying you are doing well!

Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

leapyrtwins

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Re: Newbie please help Sugery on Jan 18th
« Reply #10 on: January 19, 2013, 11:40:18 pm »
Hope all went well yesterday, Chadly, and that you're on an uneventful road to recovery even as we speak  ;D

Best,

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

neetze1

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Re: Newbie please help Sugery on Jan 18th
« Reply #11 on: January 24, 2013, 09:29:27 pm »
Hope all went well!
LakeErie--how do you know the ratings of the neurosurgery centers?  Is that published somewhere?
Anita
South Jersey
Translab 3/20/13 at HEI for 3.5 centimeter
Dr. Luxford, Dr. Lekovic, Dr. Stefan