This is what I have been hoping for over a very long period of time. Granted it still does not specifically address eye issues caused by Neurofibromatosis and other brain disorders but at least it is a start in the right direction.
Thank you medical ophthalmic community! Keep it coming!!!!
For those who are new to NF2 or do not know, dry eyes is a # 1 problem with NF2 that rates right up there with hearing loss. If it is pretty much inevitable to become rendered deaf by NF2, one most certainly does not want to become blind on top of it!! Yet, partial blindess or vision impairment often becomes the case - there are a rare few that have become deaf and blind.
Please visit http://hollyalonzo.com/
to read Holly Alonzo's blog about living life blind and deaf. Better yet, order her book "Never Giving Up Hope" to learn the challenges of becoming completely blind and then the fear of losing all your hearing little by little until it is gone. It is a REMARKABLE read and will really make you rethink the little problems in life that you think are big problems. Her story will definitely make you change your perspective!
Now back to the eye issues caused by NF2. As I said, dry eyes are a very common problem among NF2 patients. It stems from damage incurred either through surgery, radiosurgery (as in my case) or by the tumors themselves getting too big and invading the facial nerve. Through any of these causes, the facial nerve becomes damaged disrupting the tear production process or preventing the eyes from fully closing to hold in their moisture. Several people have lost sight in the eye affected by facial paralysis because the cornea became too dry and scarred.
Luckily, my ability to form tears came back within 3 years after my first brain surgery. Before that I could not even cry which left me with terrible head pressure and headaches in a time of dire grief (passing of a loved one).
Although I was lucky to regain tear production, I still cannot fully close my one eye leaving it to get dried out in environments of intense dry heat, wind, or when sleeping at night. Hence, I ALWAYS have artificial tears on me and use gel drops with a mask at night. Some people go as far as taping their eye shut at night.
So this is wonderful that the medical community is taking notice of this problem (even if it is spurred on by a the larger problem in the general community, it still benefits us).
My hope is that a spinoff affect will happen leading doctors to pay more attention to these serious and disabling vision complications caused by brain tumors and other head tramua - namely Nystagmus (jerking eyes unable to focus), Oscillopsia (bouncing eyes like seeing through a handheld camcorder), and double vision (related to eye movement and nystagmus).
Found on the website "Medical News Today"
http://www.medicalnewstoday.com/articles/190117.php
Best And Brightest Gather To Solve The Dry Eye Development Enigma
Main Category: Eye Health / Blindness
Article Date: 27 May 2010 - 10:00 PDT
www.healingtheeye.com
The Dry Eye Summit, which attracted hundreds of industry leaders to the Harbor Beach Marriott in Ft. Lauderdale the day before the opening of ARVO, spurred discussion on innovation and collaboration among ophthalmic clinical researchers, scientists, regulators, pharmaceutical executives, FDA officials and venture capitalists. Top experts in the field packed into the venue to address the complexities of the drug development process for dry eye.
"There are an estimated 100 million people who suffer from Dry Eye. It is a complex disease with multiple underlying etiologies and currently there is only one approved prescription drug, leaving a significant unmet need among patients. By bringing together the best and brightest minds across a myriad of key business and scientific disciplines, with a passion for innovation, we hope to move the industry forward," said Stuart Abelson, President & CEO of Ora, Inc., a lead sponsor of the Summit.
The full-day Summit included presentations from medical professionals, statisticians, clinical leaders and others. In addition to the dozens of speakers Wiley Chambers, MD, Acting Director for the FDA Center for Drug Evaluation and Research presented and participated in several panels at the Summit. "We appreciate the FDA contributing the time and participation of a key resource. Dr. Chamber's insight and accessibility were important to provide guidance on regulatory matters," Abelson added.
After a review of the history of dry eye by Dr. Michael Lemp, Dr. Oliver Schein delivered an epidemiological perspective of the disease and presented the fact that dry eye is estimated to affect 20% of the general population in some form. Dr. Stephen Pflugfelder went on to discuss the role of inflammation in the study of dry eye, and Dr. Reza Dana highlighted the challenges of using animal models to predict drug efficacy. A second group of researchers -- comprised of Dr. Gail Torkildsen, Dr. Darlene Dartt, and Keith Lane -- took a deep dive into the biological mechanics of how malfunctions of the complex tear production and blink systems can lead to Dry Eye.
Regulatory and clinical leaders described the importance of careful clinical trial design in drug development and the hurdles to appropriate formulation in eye drops, including safety, sterility and manufacturing concerns. Lester Kaplan, PhD Former Executive VP R&D, Allergan and Executive Chairman for Aciex Therapeutics moderated a panel discussion/conversation on establishing clinically relevant endpoints and general criteria for inclusion/exclusion for Dry Eye subgroups.
During the clinical sessions, George Ousler, Director of Dry Eye for Ora, Inc. discussed a range of technology-based research solutions, including the Controlled Adverse Environment (CAE™), to address the challenges of studying Dry Eye amidst a myriad of environmental confounds. Dr. Jerry D. Cagle, Former Senior VP of R&D and Chief Scientific Officer, Alcon, moderated a discussion with Dr. Wiley Chambers, Dr. Mark Abelson, George Ousler, and Dr. Stephen Pflugfelder on lessons learned across dozens of Dry Eye development programs and regulatory application processes.
Monday, August 23, 2010
Sunday, August 22, 2010
Promising Future Hope for the Balance Challenged
Wow! That would be totally cool to have my balance back again someday.
The opening description that I have bolded, is EXACTLY what I experience living without vestibular function. I must concentrate on every step I take and do not have the ability to read while walking or to even work on something in my hands because I completely need my eyes for orientation. When hiking, if I get distracted and try to look behind, look up, fidget with something on my pack, or try to check out the view while walking, I will stumble, trip, or sometimes even fall over. The same happenn if my mind starts to wander and I am not focused on the trail under my feet.
The challenge to solve with NF2 is whether there is a way to repair the damage tumors incur in the brain to the vestibular nerves or if a device can restimulate the nerves to get them working again. Since, the auditory nerves are completely destroyed by the tumors or severed through surgery, the auditory brainstem implant works by attempting to bypass the nerves all together and stimulate the signals for sound in the brainstem directly.
What luck that a researcher at the UW where I live is working on researching this.
Here is what is on the horizon as published on the Forbes website:
Out Of The Labs
Million-Dollar Ears
Jonathan Fahey, 07.15.09, 12:00 PM EDT
Researchers build implants that help restore patients' sense of balance.
You bounce down the block, late for work, holding a coffee, glancing at the headlines on your paper and dodging the other pedestrians who are walking at a maddeningly measured pace. Somehow, the world doesn't bounce around in your eyes like it was being filmed on a hand-held camera. Lucky you.
Some aren't so fortunate. What keeps you balanced and moves your eyes in concert with your gait is a system of loops in your inner ear called the vestibular system, and it can be damaged or disturbed by antibiotics, trauma, viruses, genetic problems and a rare condition called Ménière's Disease.
Della Santina says it's like being a little disoriented, a little wobbly and a little seasick all the time. Afflicted people can't drive safely and often have to walk with a cane. Della Santina is one of a handful of researchers working to develop an implant that restores vestibular system function. Call it bionic balance.
The coming vestibular implant is just one of several new, improving and emerging prosthetic organs, limbs and other body parts that are using ever more sensors, processors and motors--they are becoming more bionic. The goal, of course, is to make prosthetics more sophisticated, subtle, and ultimately, more closely interfaced with living human beings and therefore more helpful.
There are three bony loops in your inner ear, called semicircular canals, arranged perpendicular to each other to measure movement in three dimensions. Fluid in the hoops swishes this way and that, moving hair-like cilia on special cells that trigger nerves that send signals to your brain. Your brain triangulates these signals to keep you balanced, and to move your eyes at exactly the same speed (and exactly opposite direction) as your head so the world doesn't look like it's being filmed by an amateur.
The most common cause of the loss of this function in the U.S. is side effects from the powerful antibiotic gentamicin. Worldwide, people treated with streptomycin, an antibiotic used to fight tuberculosis, are also often afflicted. Menengitis and other viruses can also cause loss of vestibular function. (Kids born without vestibular function, however, are able to compensate relatively well.)
For adults who lose this sense, there is not much doctors can do. "The best we can offer them now is having them practice looking at a spot on the wall while shaking their heads," says Della Santina, who is also a doctor. "But the vestibulo-ocular reflex is the fastest reflex in the body. There's nothing you can do to replace that."
In part because there's no treatment, the number of people afflicted is hard to estimate. Della Santina guesses there are 50,000 in the U.S. with serious problems, and many more with less severe symptoms that could also benefit from treatment.
Santina has built a vestibular prosthesis that he hopes can someday be implanted in humans much like cochlear implants are now used to restore hearing. Instead of using a microphone to pick up sound, his system uses gyroscopes to measure movement in three dimensions. The measurements, translated to electrical impulses, would be delivered to the three vestibular nerves that emanate from the three semicircular canals, much like audio signals are delivered to the auditory nerve in cochlear implants.
Because each semicircular canal has its own nerve, a vestibular implant may actually be easier to perfect than a cochlear implant, which has to deliver many different sound frequencies to a single, bundled auditory nerve. "We have a very good sense of what sort of signal we need to deliver to give an animal or a person the sense they are spinning in a certain direction," Della Santina says.
His device has worked in rodents and monkeys so far, and it is now being tested more extensively in monkeys. He is also working to shrink the device to roughly the size of a cochlear implant and make it less power-hungry.
Across the country, at the University of Washington, Jay T. Rubinstein, a surgeon and professor in the otolaryngology department has developed a more simple vestibular implant that doesn't include sensors. This wouldn't be able to replicate the function of the vestibular system, but it could act like a pacemaker for people who have attacks that make the vestibular system go haywire, like sufferers of Meniere's disease.
He successfully implanted his device in normal rhesus monkeys without disturbing their hearing or sense of balance, and he was able to spark the vestibular system so that the monkeys' eyes moved as if they were spinning. He was then able to stop the movement.
The results were so successful that Rubenstein will apply for approval from the Food and Drug Administration to start a trial that will allow him
The opening description that I have bolded, is EXACTLY what I experience living without vestibular function. I must concentrate on every step I take and do not have the ability to read while walking or to even work on something in my hands because I completely need my eyes for orientation. When hiking, if I get distracted and try to look behind, look up, fidget with something on my pack, or try to check out the view while walking, I will stumble, trip, or sometimes even fall over. The same happenn if my mind starts to wander and I am not focused on the trail under my feet.
The challenge to solve with NF2 is whether there is a way to repair the damage tumors incur in the brain to the vestibular nerves or if a device can restimulate the nerves to get them working again. Since, the auditory nerves are completely destroyed by the tumors or severed through surgery, the auditory brainstem implant works by attempting to bypass the nerves all together and stimulate the signals for sound in the brainstem directly.
What luck that a researcher at the UW where I live is working on researching this.
Here is what is on the horizon as published on the Forbes website:
Out Of The Labs
Million-Dollar Ears
Jonathan Fahey, 07.15.09, 12:00 PM EDT
Researchers build implants that help restore patients' sense of balance.
You bounce down the block, late for work, holding a coffee, glancing at the headlines on your paper and dodging the other pedestrians who are walking at a maddeningly measured pace. Somehow, the world doesn't bounce around in your eyes like it was being filmed on a hand-held camera. Lucky you.
Some aren't so fortunate. What keeps you balanced and moves your eyes in concert with your gait is a system of loops in your inner ear called the vestibular system, and it can be damaged or disturbed by antibiotics, trauma, viruses, genetic problems and a rare condition called Ménière's Disease.
Della Santina says it's like being a little disoriented, a little wobbly and a little seasick all the time. Afflicted people can't drive safely and often have to walk with a cane. Della Santina is one of a handful of researchers working to develop an implant that restores vestibular system function. Call it bionic balance.
The coming vestibular implant is just one of several new, improving and emerging prosthetic organs, limbs and other body parts that are using ever more sensors, processors and motors--they are becoming more bionic. The goal, of course, is to make prosthetics more sophisticated, subtle, and ultimately, more closely interfaced with living human beings and therefore more helpful.
There are three bony loops in your inner ear, called semicircular canals, arranged perpendicular to each other to measure movement in three dimensions. Fluid in the hoops swishes this way and that, moving hair-like cilia on special cells that trigger nerves that send signals to your brain. Your brain triangulates these signals to keep you balanced, and to move your eyes at exactly the same speed (and exactly opposite direction) as your head so the world doesn't look like it's being filmed by an amateur.
The most common cause of the loss of this function in the U.S. is side effects from the powerful antibiotic gentamicin. Worldwide, people treated with streptomycin, an antibiotic used to fight tuberculosis, are also often afflicted. Menengitis and other viruses can also cause loss of vestibular function. (Kids born without vestibular function, however, are able to compensate relatively well.)
For adults who lose this sense, there is not much doctors can do. "The best we can offer them now is having them practice looking at a spot on the wall while shaking their heads," says Della Santina, who is also a doctor. "But the vestibulo-ocular reflex is the fastest reflex in the body. There's nothing you can do to replace that."
In part because there's no treatment, the number of people afflicted is hard to estimate. Della Santina guesses there are 50,000 in the U.S. with serious problems, and many more with less severe symptoms that could also benefit from treatment.
Santina has built a vestibular prosthesis that he hopes can someday be implanted in humans much like cochlear implants are now used to restore hearing. Instead of using a microphone to pick up sound, his system uses gyroscopes to measure movement in three dimensions. The measurements, translated to electrical impulses, would be delivered to the three vestibular nerves that emanate from the three semicircular canals, much like audio signals are delivered to the auditory nerve in cochlear implants.
Because each semicircular canal has its own nerve, a vestibular implant may actually be easier to perfect than a cochlear implant, which has to deliver many different sound frequencies to a single, bundled auditory nerve. "We have a very good sense of what sort of signal we need to deliver to give an animal or a person the sense they are spinning in a certain direction," Della Santina says.
His device has worked in rodents and monkeys so far, and it is now being tested more extensively in monkeys. He is also working to shrink the device to roughly the size of a cochlear implant and make it less power-hungry.
Across the country, at the University of Washington, Jay T. Rubinstein, a surgeon and professor in the otolaryngology department has developed a more simple vestibular implant that doesn't include sensors. This wouldn't be able to replicate the function of the vestibular system, but it could act like a pacemaker for people who have attacks that make the vestibular system go haywire, like sufferers of Meniere's disease.
He successfully implanted his device in normal rhesus monkeys without disturbing their hearing or sense of balance, and he was able to spark the vestibular system so that the monkeys' eyes moved as if they were spinning. He was then able to stop the movement.
The results were so successful that Rubenstein will apply for approval from the Food and Drug Administration to start a trial that will allow him
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