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Author Topic: My Fellow Wonkyheads  (Read 10254 times)

LADavid

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My Fellow Wonkyheads
« on: July 16, 2009, 09:17:18 am »
I mentioned this in the Community Section a week ago, but I'm moving  up here to keep you updated.  Over the past two months my balance had become very bad -- the worst since surgery.  So bad that I fell getting off a bus.  This led to talks with my PT, Theresa England and my House doctor, Dr Slattery.  After an ENG test and a few others, I qualified for and was accepted into a research study program testing a system called the Brain Port -- which if successful in it's mission, it will train the vestibular system to behave.  I am one of 250 test subjects in the country.  It's something of a bio-feedback system.

I started training in the PT office on Monday and concluded Wednesday.  Now for the next 8 weeks, I do the program at home.

Here's what I've discovered.  It's very hard and tiring being a lab rat.   Each day in the office there were two gruelling one hour sessions seperated by a four hour break -- very needed. But!  The good news!  Immediately after the first session yesterday, I felt as normal as I have since surgery.  Unfortunately, it wore off after an hour or so.  But according to the test coordinator, the longer I use the program, the longer the residual effects willl be -- until they become permanent.

It is tough.  To give you some sense of the torture er I mean test -- for the last part of the hour session, I stood on a bouncy foam cushion in a corner with my feet close together with the Brain Port device attached to me with my eyes closed --- for 20 MINUTES!.  I've done the 2 minute stuff before -- but 20!  The last time I stood still for that long was in ROTC in college.

What is great about this (other than improving my balance) is that once the program is approved and goes public, it will be expensive.  I have the great fortune to do this at no cost.  Big thanks to Theresa England of England PT and Dr. Slattery who thought of me and qualified me for the program.

I will keep you all posted on the progress.  But right now it's time to do my morning 20 minues.
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Jackie

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Re: My Fellow Wonkyheads
« Reply #1 on: July 16, 2009, 09:53:23 am »
Wow David,

That's fantastic that you were accepted into the program, and it will be even better if it works for you! Thank-you for being a "lab rat" that everyone who is challenged with balance problems may benefit by your contribution! It's only fair that you get benefits from it too! You are a good man, and I'll look forward to your continued progress and updates.

All the best to you,
Jackie
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CHD63

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Re: My Fellow Wonkyheads
« Reply #2 on: July 16, 2009, 11:53:50 am »
David .....

After having done many months of vestibular therapy, I can really relate to the standing on a foam cushion with your eyes closed.  I have stood for 3 minutes but 20 sounds very tiring indeed!!  Actually, I find the first 15 seconds the most challenging every time ..... when I am refocusing my senses to my legs, ankles, and feet.  Like you, I have no measurable vestibular function from either side (via ENG and somatosensory tests) so visual and muscular cues are all I have to go on.  I find that when I slack off doing the exercises at home, I experience some regression in stability.  I will have to confess I get very bored doing the exercises and have to find new ways to keep myself motivated!  (Return of the wonkies is a pretty good motivator!  ::))

I would love to be part of a study such as you are ..... alas I am in the wrong part of the country for that to be practical.  I am going to be following your progress very closely.  Thanks for doing this for the rest of us!

Clarice
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LADavid

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Re: My Fellow Wonkyheads
« Reply #3 on: July 16, 2009, 11:57:57 am »
Clarice

I believe the group is still looking for test subjects in all parts of the country.  I'll check and see what I can find out.

David
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1.5 CM Translab Rt ear.
Sort of quiet around here.
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alicia

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Re: My Fellow Wonkyheads
« Reply #4 on: July 16, 2009, 01:29:53 pm »
Good to hear from you David!  Sorry for the continued troubles.  20 minutes on the foam - that is torture.  I did 2 minutes with my eyes closed and had to grab the bars around me many times!  Good luck with the exercises at home - hope you see improvement!  Thanks again for meeting with me and my family - we all appreciated it tremendously!  A
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Jim Scott

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Re: My Fellow Wonkyheads
« Reply #5 on: July 16, 2009, 01:31:47 pm »
David ~

Thanks for the update on the 'Brain Port' vestibular rehab program and your experiences as a' lab rat'.  Yes, it does seem difficult but the reward sounds worth it, especially when the progress in your equilibrium improves on a more permanent basis.  I have pretty serviceable balance which could likely improve with this kind of program but frankly, unless I started falling on a regular basis, I'm too lazy to take on something that demanding.  My doctor thinks my balance is 'acceptable' (and I agree) so I'll just leave it at that.  ;)  I wish you the stamina you'll need for the 'Brain Port' program and of course, total success with it.  You've earned it.

Jim
« Last Edit: July 16, 2009, 04:14:29 pm by Jim Scott »
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ppearl214

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Re: My Fellow Wonkyheads
« Reply #6 on: July 16, 2009, 03:02:19 pm »
David,

saw the other thread and posted there.. but just wanted to say "good for you" for signing up for this.. and I truly, truly hope it helps.  Will follow along... I may need something like this, as well, down the road.

Phyl
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wcrimi

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Re: My Fellow Wonkyheads
« Reply #7 on: July 16, 2009, 07:01:45 pm »
David,

This sounds like wonderful news for you and for others down the line. Thanks so much for the update.

I am very motivated to improve my balance as much as I possibly can as soon as I can. Since you are able to do some of this at home, I might be able to duplicate some of it without being part of the program.

When you do this at home, are you still hooked up to some kind of device or was that just some initial part of some test?

What purpose does the device serve while your eyes are closed?

I'd be willing to give standing for 20 minutes with eyes closed a whirl for awhile to see if it helps me. I do several "eye's closed" exercises already (with feet heel to toe is a killer). I can rarely last more than 20 seconds and usually not more than 10.   I keep repeating it for a few minutes and am clearly better now than I was a few months ago.   
« Last Edit: July 16, 2009, 07:16:15 pm by wcrimi »
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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

wcrimi

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Re: My Fellow Wonkyheads
« Reply #8 on: July 16, 2009, 07:04:54 pm »
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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

sgerrard

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Re: My Fellow Wonkyheads
« Reply #9 on: July 16, 2009, 11:00:14 pm »
If this is that thing with the tongue device, it could work out well. In the second half of this video, Cheryl Schiltz, who lost both balance nerves, decided she couldn't go through life like that, and retrained her brain using a BrainPort. She explains it all while riding a bicycle. 8)

http://www.pbs.org/kcet/wiredscience/video/286-mixed_feelings.html

Steve
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wendysig

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Re: My Fellow Wonkyheads
« Reply #10 on: July 17, 2009, 01:17:37 am »
Hi David,

I wondered where you were.   ;)  It sound like being a lab rat is no fun, but hopefully will be very beneficial.  I hope this works for you.

Wendy
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CHD63

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Re: My Fellow Wonkyheads
« Reply #11 on: July 17, 2009, 08:13:47 am »
Steve .....

Thanks for sending the link to the advances in balance therapy.  Now I am curious if this is what David is doing ......

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

wcrimi

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Re: My Fellow Wonkyheads
« Reply #12 on: July 17, 2009, 08:42:04 am »
Steve,

That was an incredible video.  It gives some hope to huge numbers of people with a variety of issues.  Simply amazing!!!!

Wayne
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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

saralynn143

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Re: My Fellow Wonkyheads
« Reply #13 on: July 17, 2009, 12:37:54 pm »
Quote from: sgerrard on July 16, 2009, 11:00:14 pm
If this is that thing with the tongue device, it could work out well. In the second half of this video, Cheryl Schiltz, who lost both balance nerves, decided she couldn't go through life like that, and retrained her brain using a BrainPort. She explains it all while riding a bicycle. 8)

http://www.pbs.org/kcet/wiredscience/video/286-mixed_feelings.html

Steve

That was absolutely fascinating. I wonder if they are also working on the sense of hearing.

Sara
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reg

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Re: My Fellow Wonkyheads
« Reply #14 on: July 17, 2009, 01:13:42 pm »
david,
i signed up for the program (brainport) but its not offered in North Carolina yet ((go figure the research triangle park is home to most drug and medical development) however i am still awaiting a reply from a representative.  i found out about it through my local support group anyways good luck and keep us informed :)
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