ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: LADavid on July 16, 2009, 09:17:18 am
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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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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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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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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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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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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
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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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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.
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Here's some info
http://wicab.us/index.php
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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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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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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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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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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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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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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
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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?
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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
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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
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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
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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)?
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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
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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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-3.gif)
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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?