Author Topic: Brain Port for vertigo  (Read 16366 times)

Patti UT

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Brain Port for vertigo
« on: June 09, 2011, 12:26:05 pm »
Hi ALl,
  It's been a long while since I came on the forum, 2nd n surgery was Jan 2010.  I am at this point convinced I am doomed for a life of balance problems.  The vertigo is horrific and I fall frequently.  I ahve become a prisioner in my house for fear if I go out I'll fall and injur myself again.  I was reading about the BRAIN PORT. has anyone ever used one of these and did it help.  I am not finding anyone locally here that uses them for vestibular therapy.

thanks for reading this

patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Jim Scott

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Re: Brain Port for vertigo
« Reply #1 on: June 09, 2011, 01:42:41 pm »
Hi, Patti ~

I'm sorry to learn that you're struggling with balance deficts that are impacting your quality of life but I'm gald to see that you're investigating possible solutions.  I don't know much about the BrainPort® device but I do know that, unfortunately, it is not available in the U.S.  However, it is available in Canada, for whatever that may be worth.  Here is a link to the manufacturers website, which might offer you more information.  http://wicab.us/index.php 

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.

nftwoed

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Re: Brain Port for vertigo
« Reply #2 on: June 09, 2011, 08:13:55 pm »
Hi;
  I read Brain Port discussed quite a while ago on a Meniere's Disease site and mentioned on another AN site, but haven't read anything for quite a while; Say, nearly 3 years? I see it is not in this groups archived posts of 6 years.
  From what I read the tongue is guided by training provided by the machine to help provide balance. The Brain Port is not worn all the time and the pt. requires frequent exposure to Brain Port to have hours or a few short days lasting vestibular improvement.
  My feeling is since the item hasn't seemed to catch on, it's ultimate success was very limited.
  As posted, it is not available in the USA, so obviously could not be FDA approved.
  I did read the other day a Cochlear Implant 'type' device is being experimented with for the vestibular system. It remains to be implanted in Humans. Trials for that were to begin this Spring. I have forgotten where the device is being developed.

Patti UT

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Re: Brain Port for vertigo
« Reply #3 on: June 11, 2011, 07:53:44 pm »
HI JIm,  Long time not post eh?   Thanks for the input guys,  betwen my really bad tinnitus and balance, I keep hoping somewhere there will be some answers.  In the emantime,  keep plugging along

HUGS to ALl
Patti ut
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

HeadCase2

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Re: Brain Port for vertigo
« Reply #4 on: June 15, 2011, 11:42:45 am »
I think ladavid, a forum member,  participated in a Brainport trial, see http://www.anausa.org/smf/index.php?topic=10525.msg121402;topicseen#msg121402

You could send ladavid a note, and I'm sure he would be glad to tell about his experience with a Brainport device.

Regards,
  Rob
« Last Edit: June 23, 2011, 07:14:13 am by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

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lillacoix

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Re: Brain Port for vertigo
« Reply #5 on: August 18, 2011, 06:58:45 pm »
Hi Patti,
I just joined this forum (today is 8-18-11) after doing a search on Brainport information on Google, and coming across your post here, about the BP.  I have personally have been in contact online, with a really nice woman named Annie, who has many issues with balance and severe dizziness due to several serious health issues... and she had a wonderful group of friends who did a fundraiser to buy a Brainport for her!!  She lives in the United States and went up to Canada to obtain her Brainport device about a year and 1/2 (or so) ago.... and she has had wonderful results from the Brainport in helping to relieve a lot of her dizziness and balance and sensory issues.  I myself have had severe and constant and unrelenting vertigo/dizziness and ringing in my ears and extremely bad headaches, extreme fatigue, weird and disturbing visual and sensory issues... where I feel like I am seeing the world through a tunnel... or through a veil/fog.... or like I just woke up from anesthesia, along with terrible pressure in my head and ears.  Thankfully I do not have hearing loss!!  I am grateful for that.  I am probably not doing a very good job of describing all of my icky vestibular symptoms to you at this moment, because looking at the computer is bothering my eyes and making my dizziness worse, so I am trying to keep this brief for now.  But anyway, I am posting here, hoping you will come back to read this... because there is a big chance that the BP device could help you a lot... and I can talk with you more online, or through email, if you would like.  In fact, if I can be of any help to you (because I understand how horrific it is to suffer with vestibular issues) then please contact me anytime.  My doctors have never given me a solid/definitive diagnosis... and I've been told that I could have atypical Meniere's or vestibular migraines, among several other things.  All I know is that I have been suffering terribly, for almost 7 years straight, and I have searched high and low for an answer to my vestibular issue... as well as something that can bring me some relief from this, as it is 24/7.  I found Annie on an one of many internet forums for vestibular issues, after searching for information myself about the Brainport.  I emailed her and she was very helpful and willing to share any information about her experience with the Brainport.  I am sure she would be more than happy to communicate with you about the BP, as well, if you want to contact her about that.  Please message me and let me know... and I can email her and ask her to get in contact with you, or have you contact her online.  I am still very interested in purchasing a Brainport for myself, up in Canada (Vancouver area), as I live in New Mexico... so I would be closest to the Brainport center that is in Vancouver.  There is also one in, or near Toronto, I believe... and also one in England.  Insurance does not cover the device, so you would have to pay for everything out of pocket.... but the price has gone down significantly for the device, at least... so that helps a little.  Anyway, I hope you read this, since your post was from several months ago.  Take care, and maybe we can connect about this soon.
Sincerely, Lisa  :)

jezsab

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Re: Brain Port for vertigo
« Reply #6 on: April 14, 2013, 09:37:49 pm »
Hi all. Not sure if anyone will read my reply as it has been some time since any activity on this posting. But thought I would respond given I have extensive experience of the amazing Brainport balance device which changed my life for the better so much! I have also been involved in helping others who have had similar success with it despite the fact that it did not obtain approval in the USA for therapeutic use.

I had an angioma removed from my brain stem in 2003 but had residual neurological problems including dizziness and balance problems. This made normal physical activities very difficult. In 2009 I came across the book 'The Brain That Changes Itself' by Norman Doidge. The first chapter covered the amazing story of a lady who had severe vestibular problems arising from gentamicin (antibiotic) toxicity. Her problems were so similar to mine that I was blown away by her story. She was able to get her balance back from training with the Brainport balance device. I researched and traveled from Australia to UK for training. I noticed a difference in how I felt after only a few sessions and before long my stamina had improved so I could walk for much longer periods and more balanced and comfortable. the landscape didn't move as much and I could handle slopes and rough terrain more easily. I bought a device to bring home, continued my training and am still using it each day to maintain my balance in a much better state than previously. I had to send it back to the US in 2011 for warranty issues and didn't relapse over a few weeks without it but do feel it still helps me to train regularly with the device.

Apart from improvement in my balance, all my other neurological deficits improved. My speech was quite slurred previously but within a few weeks my tongue was no longer deviated to the left and was a more normal shape instead of being withered on the left side. Amazing, definitely not a placebo effect no matter what anyone says, that is a specific physical change that you can't manufacture. I no longer have as many problems with swallowing, choking, breathing difficulties which has made my life much more comfortable. People cannot tell anything is wrong with me now. Prior to Brainport I would be asked what had happened to me as I looked like I had a disability.

I was in the UK for 5 weeks after commencing training and my family and friends were greatly surprised by my improvement after hitting a plateau in my improvement six years following my bleed and surgery. It was so good to finally see some significant improvement in my condition. I still have my problems but am able to do so much more than before and have much more independence. I even went back to driving my car after 8 yrs off the road. I have the Brainport developers to thank for these changes which were not happening with regular balance rehabilitation I had been undergoing for years.

I am happy to answer specific questions and receive emails from anyone wanting more info. I don't have any gain from this, do not sell the device or have any connection to the people who made it other than as a customer.

spgreenfield

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Re: Brain Port for vertigo
« Reply #7 on: April 22, 2013, 11:49:04 am »
Jezsab-

WOW!  That is fantastic that you've found something that helps you that much!  I'm one of the blessed and lucky folk that still has a functioning vestibular nerve and can function pretty well.  Much better than some of the posts I have seen on this site.  I certainly HOPE that others will read your story!  I might suggest that you copy and paste this story into a brand-new post if you want...it might draw a little more attention as you say - this is an old post....

Keep up the good work!

Pam
Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

Kelsey123

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Re: Brain Port for vertigo
« Reply #8 on: June 21, 2013, 08:27:30 pm »
Hello ,
I am selling my Brain Port Balance device on Craigslist. I live in Vancouver B.C. , Canada. It helped me with vertigo from Multiple Sclerosis, but other symptoms I am having now are preventing me from using it.
My damage is in the brainstem , rather than the ear, but have swimmy vertigo 24 hours a day for 20 years, plus rotational sometimes. Also disabling, mostly housebound and all of that.  It's awful. It wasn't a cure, but I'd say it improved me about 40-50% .. hard to tell exactly because of ups and downs with M.S. with fatigue, stress, colds and more.
Can show how to use the unit and also there is a physiotherapist in my city who is certified to train people on the device.
I was just looking for if any other units were for sale and the "brainport" keyword popped up your site.
Thanks,
Kelsey

Julia Chambeyron

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Re: Brain Port for vertigo
« Reply #9 on: October 25, 2013, 02:50:49 am »
Hello everyone I have been reading about the BrianPort device with interest. I live in France and have been suffering from a vestibular dsorder for 10 yesrs - it has severely affected my llife. I would be interested in buying the device and finding out how to use it.  Kelsey - how would that work for me as I live in Europe?! I wonder if there are any training physiotherapists who could advise?
Great to hear that it has helped people, alhtough it has not been apporved by the FDA.

Thanks and best to all
Julia

lorjacks

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Re: Brain Port for vertigo
« Reply #10 on: May 14, 2014, 01:18:21 pm »
Found this video and think this is very interesting. Apparently this works and needs to be approved in the US
https://www.youtube.com/watch?v=S_FMZ7Zyg5U
diagnosed in 2009
W&W 5 years
AN grew to 2.4
CK at the University of Miami Sylvester Center
July 30, 2014
"By heaven, man, we are turned round and round in this world, like yonder windlass, and Fate is the handspike"... Melville

IbSCA2

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Re: Brain Port for vertigo
« Reply #11 on: July 22, 2016, 04:35:07 pm »
Hi everyone, I am interested in finding out more about results achieved by using BrainPort.  I notice there has not been any activity here since 2014.  Is there a reason why?  Is anyone still using BrainPort? I look forward to hearing from someone

eric - IL

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Re: Brain Port for vertigo
« Reply #12 on: August 11, 2016, 10:08:49 am »
Just got back from Montreal.
My 17 year old daughter had concussion 2 years ago and is still facing:
headaches 24 x 7
balance issues
bothered by light and sound...but gets 'over stimulated'  and has to shut down and go hide herself away.

We wanted to try PoNS device, but it is not yet approved (in CA or USA).  So we scheduled with the only facility that has been testing the PoNS device for brainport sessions for balance as well as biofeedback.

First session was 15 minutes with BrainPort, standing still with eyes closed.

She came out WAY overstimulated!   She could not handle it and insisted we give up.
It has been 2 days, and the over-stimulation is slowly dropping, but she is scared that it is taking this long.

We have returned home and will do same biofeedback here in Chicago.

So unfortunately, we cannot offer any real results....but please talk to Marcel ....

Marcel Mazaltarim M.Sc Directeur   Montreal Neurofeedback
3400 Jean Talon West -suite 100-Montréal (Qu) H3R-2E8 I 514-481-7867/ ext: 202
www.neuromtl.com
www.montrealneurofeedback.com

Eric

 


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