Author Topic: Rare Surgery Restores NF2 Man’s Hearing After 10 Years  (Read 9772 times)

ppearl214

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Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« on: November 08, 2009, 06:42:07 am »
http://www.thebostonchannel.com/health/21544853/detail.html

Article plus video/interview with the patient (saw the interview on this am's morning news).  Local NF2 patient has successful sugery that restores his hearing after almost 10 yrs of being gone due to NF2/multiple surgeries.  Another fantastic job out of Mass Eye and Ear in Boston, MA.

Phyl

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Rare Surgery Restores Man’s Hearing After 10 Years
Mass Eye & Ear, MGH Doctors Implant

POSTED: 5:38 pm EST November 6, 2009
UPDATED: 6:09 pm EST November 6, 2009
 
BOSTON -- Danny Sanborn, 35, is a die-hard Red Sox fan, whose Scituate home is decked out in the team’s colors, banners and paraphernalia.

He loves his young niece, his dog, Precious, and his daily visits to the employees of Hennessey News and Hingham Federal Credit Union.

“He'll go in there and talk and spend a lot of time,” said his mom, Dianne Kelley. “He just feels comfortable. He knows everybody”

But for nearly a decade, Sanborn’s world has been silent.

“He hadn’t heard since he was 26 years old and he just turned 35,” said Kelley.

Benign tumors that grew out of nowhere destroyed the hearing pathways from Sanborn’s ears to his brain. It’s a condition called neurofibromatosis, or NF2, a genetic condition that affects as many as 1 in 25,000 people, according to the National Institutes of Health

As his ability to hear faded Sanborn said, “I was kind of nervous. My understanding wasn't there. My balance wasn't there.”

“It’s been sad,” said Kelley. “Because he wants to be like he used to be. He says, ‘Mum I really want to hear again.’”

This summer Sanborn agreed to a rare, somewhat risky surgery. Doctors from Mass. Eye & Ear and Massachusetts General Hospital cut into Sanborn’s skull, exposing his brain. They implanted an auditory brain stem with 21 electrodes that have replaced his damaged and destroyed hearing nerves.

Just weeks after surgery, Dr. Daniel Lee, of Mass. Eye & Ear, turned on the implant, allowing Sanborn to hear sounds – no matter how hazy – for the first time in a decade .

“It sounds, like, a little bit different but it's exciting to hear voices for the first time,” he said.

“It’s a real learning time for Danny,” said Lee. “The brain, if it's not receiving information or input, will begin to degenerate, but 10 years is not that much time. He’s had hearing in the past…so this device hopefully taps into the network that's already pre-existing. And it almost, essentially re-awakens the system that has been quiet for at least a decade in his case.”

Sanborn’s hearing still isn’t perfect, but it’s improving all the time. He is increasingly able to hear sounds, including Red Sox games, and interact more fluidly and naturally with people once again.

“To us that might seem limited,” said Lee. “But to these patients it's actually a tremendous improvement.”

“It was just a miracle,” said Sanborn’s mother when they turned on her son’s implant. “A miracle. He's wanted it for a long, long time. And he had faith, and now he has it.”
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

nancyann

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #1 on: November 08, 2009, 06:55:59 am »
Thanks for sharing this Phyl,   truly amazing !
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
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2.4 Gm. Platinum chain 2017
right facial paralysis

tenai98

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #2 on: November 08, 2009, 06:59:30 am »
wow. that is so cool....
jo
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

NancyMc

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #3 on: November 08, 2009, 08:19:26 am »
How great would that be?!  My new dream . . .
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

gingerbread6

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #4 on: November 08, 2009, 08:44:16 am »
I saw this on the news this morning. It's unbelievabe. I am so happy for this man.

Thanks for sharing that with us, Phy. How are you? I hope all is well.

Gingerbread6

Cheryl R

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #5 on: November 08, 2009, 08:58:42 am »
The man would have received the ABI which House also does and Jeff on here has also received.     It was talked about at the symposium as to how many House has done.      It does not always work  but is wonderful for some hearing back for those who do get it.      Not as much back as a cochlear implant but more than being totally deaf.       I also seen another man who had one at the Philly symposium with very good results.         The medical field has come so far!                           Cheryl R   
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

leapyrtwins

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #6 on: November 08, 2009, 01:59:22 pm »
Incredible story, Phyl.  Thanks for sharing it  ;D

Cheryl -  I'm glad that you pointed out that Jeff has a ABI; I thought of him when I read this story, but wasn't sure if this is what he has.  Thanks for the confirmation.

Jan
« Last Edit: November 08, 2009, 02:00:58 pm by leapyrtwins »
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

Jim Scott

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #7 on: November 08, 2009, 03:29:40 pm »
Phyl ~

Thanks so much for posting this story.  It's immensely encouraging as it demonstrates how much modern technology can do.  I think this device will one day be considered 'primitive' technology.  Unfortunately, I probably won't be around to take advantage of what comes down the pike (regarding the restoration of hearing) but I cope quite well with my one 'good' ear so I'm not complaining.  Thanks again for the heads up on this new hearing device. 

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.

Jeff

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #8 on: November 08, 2009, 05:44:54 pm »
Yep, that's what I have. And while it's not perfect, it's far better than being totally deaf.

I actually have 2 abi's, one on each side. The first one does not give me sound sensations, so I don't use it. The second one is great. In a one-on-one conversation in a quiet setting, I can do pretty well with the abi in conjunction with lipreading. Take either away, and I'm lost.

I was deaf for just over a year. I can't imagine 10.

Thanks for sharing this article. I relived the thrill of hearing again....

Jeff
NF2
multiple AN surgeries
last surgery June 08

HeadCase2

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #9 on: December 03, 2009, 09:13:09 am »
Very cool technology!  :)
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

4cm in Pacific Northwest

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #10 on: December 03, 2009, 09:39:27 am »
Technological advancements are truly amazing. I really want to get a baha ... just trying to fit in a consult amidst crazy family schedules.

It is amazing the technology that is out there to help AN'ers... and more importantly those who loose hearing on both sides.

It is interesting the news media indicates that all that is heard is "silence"... I guess they have no idea about the ringing, tinnitus, clicks ... and the conductive sound we get when we scratch our head. Yes it is silence on the outside ... but inside there is a whole confusing mess of sounds going on- isn't there?

DHM

P.S. Jeff great to read your post. I often think about you and your amazing perseverance. HUGS.
« Last Edit: December 03, 2009, 10:07:25 am by 4cm in Pacific Northwest »
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!

Jeff

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Re: Rare Surgery Restores NF2 Man’s Hearing After 10 Years
« Reply #11 on: December 03, 2009, 09:58:17 pm »
Thanks DHM,
And you're right about the silence. This kind of hearing loss is far from silent.I used to watch the television series about crab fisherman in Alaska. It sounds exactly like the engine room of one of those crab boats. I also hear somethin akin to a high-pitched light sabre whenever I move my eyes.
Take care all,
Jeff
NF2
multiple AN surgeries
last surgery June 08