Author Topic: October 31st will be 3 years  (Read 4541 times)

eronrabun

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October 31st will be 3 years
« on: October 13, 2008, 10:08:01 am »
Hey guys!  Most of you probably don't know me bc it's been a while since I have posted on this forum.  My name is Eron & my husband's name is Drew.  Back in 2006 my husband, then 25 years old, was diagnosed with a 3cm acoustic neuroma.  He had lost most of the hearing in his affected ear.  After MUCH deliberation and research, we decided to go to Dr. Shahinian at the Skull Base Institute.  You can read my other posts for the daily accounts of what we went through, but compared to most of the other posts, I would consider our choice to be the absolute best!  Dr Shahinian and his team are absolutely amazing.  Today, Drew's recovery is almost perfect.  He still has VERY little residual hearing in his affected ear (if he is laying on his "bad ear" he cant hear me calling his name) but we were told to expect that before the surgery.  He has recovered his balance and has zero facial paralysis.  I just want to get on this board and tell you all of our personal experience.  Drew says he is willing to talk to anyone over the phone or answer any questions.  This was an extremely scary time for us all & we know how critical this knowledge can be.  Best wishes to all who are going through this and no matter what, keep your head up - attitude is everything!
 
...message me for contact phone numbers.

-Eron & Drew
-3cm acoustic neuroma "size of an egg"
-pressing on the brain stem
-50/50 chance of severe side effect with "traditional surgery"
-chose "endoscopic procedure" by Dr Shahinian in Los Angeles, CA instead of traditional one
-wouldn't change ANYTHING!
-results are amazing!!!

Omaschwannoma

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Re: October 31st will be 3 years
« Reply #1 on: October 13, 2008, 10:21:21 am »
Thanks for the positive update and I'm very pleased you/he had a positive post treatment recovery.  This will be very encouraging news to all newbies out there trying to make a difficult decision. 

May you have a continued wonderful life. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

leapyrtwins

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Re: October 31st will be 3 years
« Reply #2 on: October 13, 2008, 10:20:57 pm »
Congratulations to Drew on (almost) 3 years!  ;D

It's wonderful to hear he's doing so well.

From time to time we have newbies ask about Dr. Shahinian and endoscopic surgery, but it seems like we don't have a lot of posties who can give them feedback.

It's great Drew is willing to be a contact for those who want more information.

Thanks for the update, Eron!

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

dufreyne

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Re: October 31st will be 3 years
« Reply #3 on: October 14, 2008, 06:21:41 pm »
That is fantastic.  Great to see such a positive outcome on a difficult situation.

Here's to many years of good health...

Dufreyne

4cm in Pacific Northwest

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Re: October 31st will be 3 years
« Reply #4 on: October 14, 2008, 08:18:41 pm »
Did he have any facial issues after he woke up form surgery- or was he ok with the face right off the bat?

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

eronrabun

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Re: October 31st will be 3 years
« Reply #5 on: October 15, 2008, 06:14:47 pm »
Honestly, he had a FEW MINOR issues.  I think only myself and his mother noticed them.  By that I mean, by the time all of the drugs & pain medicine wore off, there was no facial issues.  His mother and I noticed a very slight delay in one eye.  But, like I said, it could have just been the drugs.  Dr Shahinian did several simple nerve test immediately post surgery.  He took a soft tissue and slightly brushed Drew's cheek to see if he could feel it and he could.  He also tested his vision by having Drew follow his finger up, down, left, & right.  Drew was able to "pass" all test.  Don't get me wrong, he was VERY UNSTABLE and couldnt walk without nausea/loss of balance, but compared to other posts from other procedures, Drew's recovery was amazing.
-3cm acoustic neuroma "size of an egg"
-pressing on the brain stem
-50/50 chance of severe side effect with "traditional surgery"
-chose "endoscopic procedure" by Dr Shahinian in Los Angeles, CA instead of traditional one
-wouldn't change ANYTHING!
-results are amazing!!!

chopper

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Re: October 31st will be 3 years
« Reply #6 on: October 17, 2008, 01:12:25 pm »
I certianly remember you guys. 

Just wanted to say thank you again for responding to my questions while I was still doctor shopping.  Based on your relaying of the experience, especially the recovery and minimal issues related to it, was really what helped me make a firm and final decision on choosing that method of surgery.  Thanks again ya'll.
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute

Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

ppearl214

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Re: October 31st will be 3 years
« Reply #7 on: October 17, 2008, 02:01:07 pm »
I certianly remember you guys. 

...and I certainly remember you... great to see you, chopper! :) Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ppearl214

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Re: October 31st will be 3 years
« Reply #8 on: October 17, 2008, 02:02:30 pm »
hey Eron & Drew! great to see you both again! Thanks sooo much for the updates. Always great to get these updates so others can learn from other's experiences! thanks for sharing this... and again, great to see you!

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

mimoore

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Re: October 31st will be 3 years
« Reply #9 on: October 27, 2008, 02:48:54 pm »
That is very kind of you and your husband. I wish I knew what type of tumour I had before surgery it would have helped in the research department. Anyway I am dealing with a few issues that of course I want resolved right now, all in time, but it is great to hear of others who do just fine.
Thanks for reaching out.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Jim Scott

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Re: October 31st will be 3 years
« Reply #10 on: November 10, 2008, 04:31:32 pm »
Eron:

Thanks for making the effort to post a 3-year follow-up regarding your husbands AN experience.  His recovery sounds very similar to mine...excellent.  :D  I thank God (and a great neurosurgeon) for that.

I'm pleased to learn of another AN 'success story' and appreciate the fact that Drew is willing to talk to newly diagnosed AN patients.  Consider asking Drew to 'stop by' here some time.  We'd love to see him post.

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.