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Old 11-17-2009, 04:27 PM   #1
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alborde HB User
bilateral vestibular hypofunction

I have bilateral vestibular hypofunction.\\I had good results with the Brain port device.

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Old 01-04-2010, 04:17 AM   #2
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Re: BrainPort Balance Device

I am an Australian who has had great results with Brainport and own one which I use every day. I had brainstem bleed 2003, surgery to remove angioma, but was left with many neurological problems including constant dizziness and balance problems. I gradually improved but still needed more. Read about this device in book The Brainthat Changes Itself by Norman Doidge. I traveled to UK in June 2009 to rent the device for a month and was so thrilled with my improvement that I bought one to bring home. I am still suffering balance problems but my walking gait has improved greatly, I feel less brain fog, my speech has improved, I just feel so much better. Although a costly purchase it has been so worth it to improve the quality of my life. I am hoping that some recent talks here will result in device being made available to Australian patients further down the track but no doubt this will be a slow process. It is sad to think so many people who would benefit from the technology are not able to access it!

 
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Old 01-04-2010, 02:46 PM   #3
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Re: BrainPort Balance Device

manybikes and jezsab,
This may seem like a silly question, but I wanted to ask those who own the device:
Does it continue to help after using it for an extended period of time?
I would hate to buy one and then "habituate" to it and have it no longer work.

I'm guessing that since it relies on brain plasticity, it would not quit working like some of the medications do...but I'm just wondering.
I am considering buying one in Canada, but I want to have all the information before making such a huge purchase.

Yes! The Brain That Changes Itself is waiting for me at my public library. I made a special request for it. I'll pick it up in the morning. I am looking forward to reading it.

Last edited by alborde; 01-04-2010 at 07:41 PM. Reason: changed the work "quick" to "quit"- just a typo

 
Old 01-10-2010, 03:56 AM   #4
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Re: BrainPort Balance Device

Alborde, the Brainport is still working for me after using it for the past six months. I use it once or twice a day for 20 mins depending on my other activities. If I have a very active day then I don't tend to use it in the afternoon. The residual effect tends to last long enough between sessions. Occasionally I have a day or two off from training to check on the effect and I have not regressed significantly in that time but I do notice an increase in dizziness and neurofatigue on some occasions. However I feel so much better once I undertake the next training session. I may feel a little more wobbly initially but after a few minutes of training I can sense that I am feeling more centered.

When I first started my training I was very wobbly standing with my feet apart, shoes on and eyes closed. These days I am able to stand in a tandem Romberg position, ie one foot directly in front of the other, for the whole session. I have to change feet every 5 mins or so and sometimes have to slightly offset my front foot to balance more comfortably. This is not an easy position for people with normal balance to do with eyes closed. I occasionally lose balance in this position but it is well controlled simply by holding the chair in front of me, rebalancing and continuing with my training.

Everyone who knows me has commented that I am a changed person, and that it would be hard for anyone to guess I have a brain injury. A brain stem injury is a serious situation as this part of the brain controls our automatic functions, breathing, heart rate, swallow and cough reflex, vestibular function etc. Much of my recovery has happened before using the Brainport but I had reached a plateau in my improvement for about twelve months before my trial. I could walk independently over short distances but did not have the stamina or balance to walk on my own anywhere more challenging - slopes, uneven surfaces, stairs. Although my balance is still far from normal, I am able to do so much more now independently. R

Recently I was able to travel by plane interstate to attend a conference on my own, negotiating the airport, going to my hotel and back and forth to the conference for two days. It felt great to be able to walk through the airport mostly with my head up, feeling reasonably comfortable and balanced. Of course I took my friendly Brainport with me! I found the experience quite tiring and my dizziness did increase but I was so thrilled to be able to do it all independently. I have not done anything like this since 2003 when I traveled for work prior to my health problems.

I know this is a very expensive purchase and I am fortunate that I could save up to buy it, however I would have done anything to raise the funds to buy this device (take a loan, sell an asset, borrow from family) as my health is my most valuable asset. I am not sure how much improvement I can expect in the long term but I am satisfied that it has been worthwhile for the benefit I have already experienced. Hopefully by now you have read all about Cheryl Schiltz story in Norman Doidge's book as she had an amazing recovery from practically no vestibular function. I have since read a news article which said she has completely recovered and was working for Wicab.

I hope this is of some help to you. I don't expect the training to become less effective over time, it is just a matter of discipline to continue with it on a regular basis. For me it is not hard to find that discipline because I feel so much better when I use it regularly.

 
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Old 01-10-2010, 06:00 AM   #5
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ordev HB User
Re: BrainPort Balance Device

Jezsab,
BP stimulation has cumulative effect on your balance performance.

Last edited by Administrator; 05-17-2010 at 04:50 PM.

 
Old 01-10-2010, 12:04 PM   #6
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Re: BrainPort Balance Device

Jezab,

Do you also suffer from oscillopsia and did the Brainport device improve the oscillopsia after your sessions?

Last edited by moderator2; 01-10-2010 at 12:58 PM. Reason: please do not leave huge quotes in your message - try using the Quick Reply button instead of Quote Reply

 
Old 01-10-2010, 05:20 PM   #7
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Boof HB User
Re: BrainPort Balance Device

G'day Jezsab,

I'm so pleased that you've got your hands on something that has improved your quality of life. Onya.

I've been "unbalanced" since 1986 after an assault when I was a cop. I've tried everything the medical fraternity could throw at me, and some things I've chased myself.

Fortunately I have an 'outside the square' type of ENT surgeon who was happy to discuss a wireless embedded tongue tactile biofeedback device that I chanced upon while doing some research after reading "The Brain that Changes Itself" (what a cracker of a book, and what a bloody legend Paul Bach Y Rita was).

<edited>

Anyway, my ENT sent me to a 'highly regarded' head-of-department neoruologist specialising in the study of balance disorders. I went through a heap of testing before I was allowed to lay eyes on the great man, only to be told (and I quote) "I don't have the time to deal with you", and he didn't want to discuss the device or even refer me elsewhere. Lower than a snake's belly.

Anyway, I've got a couple of questions, if you would be so kind to answer.

How long did you have to stay O/S after starting with the BP?

And did you have any issues taking the BP out of the country, or getting it into Aus?

Thanks Jezsab, and onya once again.

Last edited by mod-anon; 01-11-2010 at 07:23 AM. Reason: Please do not post outside urls. Please read and follow posting rules.

 
Old 01-11-2010, 03:04 AM   #8
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Re: BrainPort Balance Device

gtparky
I am not sure if I do suffer from oscillopsia as I have not had any signs of nystagmus since my hospital stay in July 2003 following neurosurgery. However I do experience strange visual sensations as if the landscape is moving or jumping, I get blurry vision quite often and when my head moves from side to side I get disturbances in my perception. For example, I may imagine that a car is going to run into us when driving along simply because I have moved my head. Or I can be watching the progress of something moving, look away then when I look back it appears as if that object is in the same place as it was some seconds before even though it is moving. Hard to explain what I see but it can be quite weird. When I close my eyes I often feel like I have a kaleidoscope effect in my head, and my body feels like it is buzzing or vibrating through every cell. These effects are all lessened by regular use of the brainport. If I have a particularly active few days the symptoms can return but they are not as strong as they were before I began my training in June 2009.

 
Old 01-11-2010, 03:28 AM   #9
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Re: BrainPort Balance Device

Boof, I thought that was a very aussie nickname (not to mention the use of Onya!!) but now I see you are a fellow Aussie!! I am very interested in the information about the wireless device and will watch for more info on this. Let's hope technology continues to develop using what has been learned so far and we may end up with some simple solutions that are easy and affordable for people with balance and dizzinesss disorders. Do you know if there have been any further developments with this device, is it commercially available or still in research?

I actually stayed in the UK for six weeks because I rented the device for a month before deciding to buy it. Given the fact that I have a brain injury and central vestibular disorder rather than a peripheral vestibular disorder, it was not certain whether it would be of help to me and I wasn't even sure if I would be able to feel the tingling on my tongue as I have decreased tongue sensation. I was able to hire the Brainport for a month but knew it was helping within a few days. I had 5 appointments in quick succession at the Royal Berkshire Hospital then did the training at home, with just phone follow up the rest of the time. Normally patients who go there under the NHS would attend 10-12 sessions but the clinical scientist I saw was willing to keep the appointments to a minimum for me as I had to attend as a private patient and the cost (pd to the hospital) was 200 pounds each time. A guy I have met recently is over there at the moment and he is only staying a couple of weeks as he had already decided to buy the device. You are not able to buy the device without clinician training so travel is required unfortunately.

There is no problem bringing the device to Australia. You simply get the invoice signed at Customs following instructions from Wicab, and present it to Customs at arrival in Australia. I was allowed to bring it in without having to pay any duty and could send the paperwork back to Wicab for a refund of the VAT. It is important to get the correct details entered on your documentation at UK customs. I am not eligible for any benefit through my health insurance and it is not covered by travel insurance either. I am able to claim it on my tax as a medical expense as it is a medical device (even one that comes from overseas). It is necessary to have a letter from your GP referring you for training and purchase so that this can be claimed however. This documentation is not required in the UK however is necessary to keep with your taxation documentation to support the claim. You probably already know about this if you already regularly claim medical expenses over $1500 each year, a generous (?) 20% rebate is provided.

I mentioned in another posting that I gave a short presentation at the Eye and Ear Hospital audiology dept on my experiences with the Brainport device. I met some students who are developing technology using an audible signal instead of the tongue tingling, with the view to it being used with an ipod. Not sure how long it will be before a prototype is developed or how effective, but it is great to see that others are working on solutions that may prove to be simpler and more affordable - if they in fact work!! We can only hope it does work and is readily available soon before we are all too old to benefit!!

 
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Old 01-11-2010, 07:30 AM   #10
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ordev HB User
Re: BrainPort Balance Device

Boof,

BP is commercially available, so no problems to take it with you in or out of any country. It is critical to get initial training adjusted to your conditions, to get idea how to use it and how to apply it correctly. After that you can use it at home or at work, few 20 minutes sessions a day.

Last edited by hb-mod; 02-25-2010 at 09:34 AM. Reason: Removed Quote. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
Old 01-11-2010, 04:49 PM   #11
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alborde HB User
Re: BrainPort Balance Device

Quote:
Originally Posted by gtparky View Post
Jezab,

Do you also suffer from oscillopsia and did the Brainport device improve the oscillopsia after your sessions?
I hope it's OK if I answer this question too.
I have oscillopsia.
Within a week of using the BrainPort twice a day, my oscillopsia was gone!
Everything was amazingly vivid and clear!
I had not realized that my vision was always fuzzy- when I turn my head, when I walk, when I talk, nod, chew...
Any head movement causes problems and when are our heads perfectly still?
I could read the signs in the grocery store aisle as I walked in the grocery store. I could read street signs as I walked my dog.
My OT supervised a clinical trial with 50 participants using the BrainPort.
When I told her that everything was vivid, she said that "vivid" is the word she hears most often from her patients.

Now that I don't have the BrainPort and my eyes are crazy again, it is more obvious to me how bad my oscillopsia is. I wasn't fully aware of how impaired I was since I have had this problem my entire adult life.

It was strange to get a taste of the vivid, crisp clear life and then lose it!

 
Old 01-12-2010, 02:08 PM   #12
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jezsab HB User
Re: BrainPort Balance Device

One of the first things I noticed after starting my Brainport training was that I could see more clearly some days. Sometimes it is easier for me to read without reading glasses and I lose some of the fuzziness. Unfortunately I still need to wear specs all the time now to improve my vision since the brain injury.

When I feel that extra clarity I look around it reminds me of how the world used to look to me and it's a great feeling. Back in 2003 I initially had double vision which then dissipated and for some time I felt as if I had tunnel vision. I could only see what was directly in front of me and lost all sense of anything peripheral. Over time the world started opening up to me and it was an amazing feeling. The Brainport has given me hope of further improvement and does make it more comfortable when moving around.

Maybe the clarity that I speak of is the same thing that others describe as "vivid". I even feel like I can breathe more comfortably as I walk around because I am not feeling so tense. In fact I feel more engaged in physical activities because I am not so focused on watching the ground and keeping upright. I am sure Alborde that you know what I mean about this. For example, if I am walking around a shopping centre with a friend I am actually concentrating on the shopping experience and not so internally focused. When I am walking around the neighbourhood I notice a lot more happening around me.

Alborde, are you able to drive a car? I have not returned to driving as yet but would love to do so as it does restrict my independence. However I am concerned that my reflexes are not as sharp and that my perceptions are changed so that sudden movements in my side vision appear different to what they actually are. I might feel like we are about to be side swiped by another car that is changing lanes on a freeway, or sense something that isn't actually happening.

 
Old 01-12-2010, 02:22 PM   #13
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Boof HB User
Re: BrainPort Balance Device

G'day Jezsab,

Thanks for the information, it's invaluable to finally get some practical aspects of trying to lay my hands on a BP.

As for the other gizmo, as far as I'm aware it is still in the developmental stage with some clinical trials with people affected with balance disorders, rather than the 'healthy-person' trials that were published. I did print off some more recent information (about 3 months ago) to give to my doctors, and I'll try to find the web-links and post them here. The most up-to-date info was an article in a French neuroscience journal, which was quite positive.

Ordev,

Thanks for your input. One of the very few problems with living in Australia is the time it takes to get new technology into the market.

Last edited by hb-mod; 02-25-2010 at 09:35 AM. Reason: Removed Quote. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
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Old 01-12-2010, 04:31 PM   #14
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alborde HB User
Re: BrainPort Balance Device

jezsab,
yes. it sounds like we had very similar experiences with our vision.
it was amazing to get more peripheral vision!
you said "the world starting opening up to me."
that's exactly how i felt.
there was "more" of everything.
it even felt like my office was bigger and my house was bigger!
there was more space, more openness...
in addition to more time and more energy!
my experiencing of shopping, working, etc. was bigger, better...so hard to explain!

i do drive.
but i find driving exhausting.
i always thought everyone found it exhausting because i live it a city
known for the traffic.
with the BrainPort, driving was easy!

 
Old 01-12-2010, 06:40 PM   #15
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warpony2310 HB Userwarpony2310 HB Userwarpony2310 HB Userwarpony2310 HB User
Re: BrainPort Balance Device

they just told me it sounded like i had mav and i needed 25 percent damage to use the brain port device,,,,,,and a current test the water in the ear,,,

 
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