Author Topic: My Fellow Wonkyheads  (Read 10787 times)

LADavid

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Re: My Fellow Wonkyheads
« Reply #15 on: July 17, 2009, 07:00:27 pm »
Great comments.  And excellent links Steve and Wayne.  Yes, that is the BrainPort device I am using in the research study.  Apparently it has been in use.  But it doesn't have FDA approval.  So that's the reason for the clinical study I am in.  I'm not quite sure how the test lis being done and being a lab rat, I don't think I'm supposed to know -- just be a good rat and stand in the corner with your eyes closed for 20 minutes twice a day, that's all you need to know.

Being that it's a test for the FDA, I'm guessing that there aren't test sites in Canada, Donnalynn.  But in the link that Wayne sent, I did find a list of test clinic locations.
http://wicab.us/research/clinical-sites.php#California
It also provides a link to contact if you're interested in the program.  Proximity to the test clinic wasn't that critical for me -- except for the first three days where I trained in the clinic.  Now for the next eight weeks, I do the exercise at home while keeping a log and reporting in once a week via email.  Then at the end of the eight weeks I return for a follow-up evaluation.  All of us who have had micro-surgery meet the first condition -- disrupted balance.  Then there are a few other issues that a PT would evaluate.  I know they're looking for more candidates -- I suggest checking into it because I have seen some results -- not huge -- but much better than the relapse I had in June.  I'll keep you posted as I progress.
My best
David

Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

wcrimi

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Re: My Fellow Wonkyheads
« Reply #16 on: July 17, 2009, 07:28:53 pm »
David is the device just worn on your head while you stand in the corner? 

Do you get some kind of feedback from the device that helps you balance while you are standing in the corner? 
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

LADavid

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Re: My Fellow Wonkyheads
« Reply #17 on: July 17, 2009, 07:57:24 pm »
Wayne -- the device is worn by a strap around my neck.  There is a cable that runs from the device to the electrode pad that sits on my tongue.  Beyond that explanation, my brain becomes scientifically dysfunctional.  It's one of those magic things with lights on it that beeps and makes my brain sore when I try to think about it too much.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Sue

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Re: My Fellow Wonkyheads
« Reply #18 on: July 17, 2009, 08:23:19 pm »
Wow, David, you have quite a story there and it seems like this will benefit you so much.  I am so happy that this is working out for you and that you were selected.  Thank you so much for sharing your experiences with all of us.  And you tell it very well and with great humor.  Always a plus with me, of course.

Rooting for you,

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


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saralynn143

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Re: My Fellow Wonkyheads
« Reply #19 on: July 18, 2009, 07:38:20 am »
David, before your last session with the powers that be for this study, you seriously need to volunteer for a study on hearing. If they can do sight and balance, they can surely do that too.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
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Lilan

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Re: My Fellow Wonkyheads
« Reply #20 on: July 20, 2009, 05:43:28 am »
LADavid, best of luck as you continue this!

If approved, is the BrainPort something that would be used externally as you are, just during rehab exercises, or is it something that would be implanted (?) in the brain in another form permanently (like a BAHA for balance)?



Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

lori67

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Re: My Fellow Wonkyheads
« Reply #21 on: July 20, 2009, 10:13:30 am »
David,

You are a man of many talents!  I'm sure you make a great lab rat - and sounds like the benefits and the cost savings will be well worth it!

Good luck with it!  Now, get back in your corner!   ;D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Captain Deb

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Re: My Fellow Wonkyheads
« Reply #22 on: July 20, 2009, 10:43:16 am »
Captain Wonkyhead here.  Today was the first day out walking my dog in 3 months due to various health issues--balance was absolutely terrible--the phrase "use it or lose it" is certainly one which pertains to us.  Thank you, David for participating in this project.  Maybe future generations won't have some of the issues we are all facing thanks to your lab-ratness.  Best of luck wiv it, matie!!

AAAAARRRRRR!!!!!!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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chocolatetruffle

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Re: My Fellow Wonkyheads
« Reply #23 on: July 20, 2009, 08:45:50 pm »
so good to hear from you david, missed your weekly updates!  this study is really interesting and thanks for sharing it with us, your participation will definitely help many people  ;D

by the way, how does one get to be involved in such studies? are there any studies regarding SSD out there?
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan