Sensory substitution for bilateral vestibular loss:

Email from a user of the "brainport" device

[Comments from Dr. Hain -- this email was sent to me in response to the somewhat negative take I have on the "brainport" device on my webpage on sensory substitution for bilateral vestibular loss. I have put it here in the interest of fairness. Minor editing was done to preserve confidentiality. This email concerns a person who has a normal inner ear, and for this reason, is not relevant to the general theme that the "brainport" device is an irrational treatment for bilateral vestibular loss ]

I was disappointed to read your brief summary regarding devices that use a tongue stimulator to replace vestibular input. I have benefited from this technology (Brainport by Wicab Ltd) and the results have been very real after trying many different rehabilitation methods to overcome vestibular problems. In my 40's, I suffered a bleed as a result of an angioma in the brain stem and lost my balance overnight. I had neurosurgery to remove the angioma which was a great success but left me with many neurological deficits. The dizziness and balance problems have turned my life upside down. I have had a lot of balance rehabilitation since that time and greatly improved through these activities. However in recent years I hit a plateau despite continuing to work at improving my balance. These problems restricted my physical activities and impacted greatly on my stamina. I felt like I was walking on the deck of a ship. I had a number of falls and suffered injuries at times, one time being hospitalized and having surgery to repair a badly fractured humerus.
 
I read about the Brainport balance device in January 2009 in a book called "The Brain That Changes Itself" by Norman Doidge. The subject of the chapter about this device had a totally different situation to myself, yet her experiences with balance and dizziness sounded so like my own. I researched and had contact with the company that makes this device, Wicab Ltd. I read research papers and patient testimonials that convinced me that it was worth a try rather than simply accept that my balance would always be a problem for me.
 
I rented a Brainport for a month. The results were so great that I purchased my own device and brought it back home. The exercises I did while having the tongue stimulator in my mouth were no more complicated than those I did in standard balance rehabilitation. My improvement was much more rapid than anything I have experienced before and I simply cannot put this down to a placebo effect. Within several days I was seeing more clearly after six years of brain fog. The landscape wasn't moving as much when I walked around so I felt I could look around more. My speech is almost normal after being slurred for 6 years. Most of the time you cannot tell that I have suffered a brain injury, I walk with a much more normal gait. I have to train twice a day for twenty minutes or the effects will wear off then my balance does get worse. I could tell you so much more about the positive changes I have experienced and I have no doubt that it is due to the training with this incredible device. I can do so much more physical activity than before. My husband was amazed at the increase in my stamina after only a few short weeks of training.  I am not back to normal, but the quality of my life is much improved. My family noticed a huge difference in my whole state after only 6 weeks of training. My neurological state was much improved with better control of my breathing, improved gag/swallow and cough reflex, improved sleep patterns, improved eye tracking. My doctors were all amazed at the improvement.
 
Unfortunately not enough practitioners in the neurology world are taking notice of this development, to the detriment of their patients. In science one always has to be skeptical I guess, but in the meantime there are patients who are suffering from these terrible symptoms and not able to live their lives normally. Our vestibular system is something we take for granted until we lose it. I am aware of a growing group of people who have benefited from this technology, but most have had to go to huge expense in order to get access to something that should be freely available to us. There are no horrible side effects unlike medication prescribed for dizziness.
 
I urge you and your community to look at this technology with an open mind. You may be very surprised what you find.