Thursday, February 26, 2015

The Future Is Near!

One of the most interesting areas of research for me as a person who has lost all balance function in one ear has to do with restoring that function.

I was very surprised at Celebration 2015 when I sat in on a session entitled "The Future Sounds Better Than Ever".  I was expecting to hear of advances in technology, which I did, that has to do with improving or restoring a persons hearing.

I heard of a totally implantable Cochlear implant (TIKI) under development and how the barrier they are having the most trouble with has to do with the implantable microphone and sound quality. They are working towards the day when you will not be able to tell if a person has an implant or not.

I heard of all the research relating to the benefits of having 2 implants, 1 in each ear, and the positive impact on a persons speech perception as well as hearing in noise and being able to tell where sounds are coming from.

I heard of the positive aspects having 2 implants has on a persons brain function.
L-R Dr. Papsin, Jim Patrick, Chief Engineer at Cochlear, Dr. Kelsall, Dr. Lin

I heard Dr. Frank Lin talk on the possible, and very likely, link between hearing loss and cognitive decline leading to a 2 to 5 times higher risk of developing dementia. The research is just beginning, but the link appears to be there, and also, the reversing of hearing loss on improving or preventing cognitive decline. It is becoming more and more clear that a part of healthy brain aging is the preservation of a persons hearing.

But what intrigued me the most was Dr. Blake Papsin and his talk on the development of an implantable device to restore the balance function.

He stated the he was consulting with Cochlear Limited on a device that would have the capability of sensing a persons body position and send an electronic signal to the semi-circular canals to adjust the persons posture as required.

This is significant! As a person who has no balance in one ear, the thought of losing it completely is a bit overwhelming.  My ENT brought this forward as what possibly may happen with me.  He told me I would be able to "function", but I would most likely be "unstable".  I don't like the words "function" and "unstable" used in this fashion.  I don't want to "function", I want to be productive.

Dr. Papsin showed a video of a child demonstrating the possibilities. The young boy was standing on a thick piece of foam cushion, similar to what you would use as a chair seat.  Anyone who has gone through vestibular rehab therapy (VRT) knows how difficult that task can be, especially if you have a compromised balance system. The point of it is to remove your feet from being able to tell your brain how you are standing.  If you can do it with your eyes open, just try it once with them shut!

The person giving the young lad the test needed to help keep the boy upright while he was standing on the foam. When they turned the device on, the boy did not move. No swaying, no wobbling, no tipping over, nothing! He was on the same piece of foam!


He also showed a video of a child riding a scooter in his driveway during the day and also one of a child ice skating.  Neither of these children had ANY balance function from their ears.  He used these to make a point.  A person can adjust to the loss of balance by depending on their sight and muscles from the legs, but take either of those away and they have ZERO preventive response to prevent a fall.

I know this from experience. I have told people many times, if they want to see something funny, put me in a room with no natural light, close the door, and randomly kill the lights.  I will be reaching and groping for anything I can to keep me from falling over.

What is the point of all of this? Just another intervention by modern medicine that isn't really needed?

Not at all. Considering that falls are the number one reason for injuries in people of all ages and especially in older people, the benefits should seem so obvious. Fewer trips to the ER, fewer broken bones, less time needed in facilities to rehab, a potentially longer and healthier life.

But even beyond that, he told of a statistic I was amazed to hear.  His specialty is children with hearing loss. Research shows that 50% of all children with hearing loss also have no functioning balance system. They go hand in hand. He also stated that a child with a cochlear implant that has no balance function is 8.6 times more likely to have cochlear implant failure than one that has a functioning balance system. 8.6 TIMES!  The reason is fairly easy to figure out. It is not the device's fault. It is the fact that children without balance fall more, and consequently, bonk their head more, leading to device failure.

These devices are not inexpensive. They are designed to last a lifetime. Who would want to have one replaced 8 times more than what should be expected?

There is other research going on with the same end goal in mind. Here are two links to vestibular implant research:

http://www.hopkinsmedicine.org/otolaryngology/research/vestibular/VNEL

http://www.washington.edu/news/2010/10/21/researchers-develop-first-implanted-device-to-treat-balance-disorder/


The internal device that Cochlear is working on would have 2 electrode arrays. 1 for the cochlea, to restore hearing, and 1 for the semi circular canals, to restore balance.  The external processor would have a gyroscope built in to sense the position of the person and signal the vestibular system electronically to adjust, as well as all the currently and potentially available hearing benefits.

As someone who potentially could use this, I quickly signed  my name on question card to be a test subject, if possible.

In the words of Dr. Papsin, "The future of implantable medical devices has to do with the vestibular system".

It may be a few years off before this is available, but the future certainly does look promising.

'Til next time

Dennis

Just a guy trying to live with an invisible, potentially debilitating disease.

Thursday, February 19, 2015

Blessings

I don't know much about being a professional writer, nor do I claim to be one. I write these posts as I am moved to do so. Perhaps that is the wrong way to go about this endeavor and perhaps it will leave me at a loss for something to write about but for right now this works.

I just returned from an amazing conference in Orlando, Florida with an idea in my mind about what I should write about. Every time I start, the idea just doesn't flow. It ends up sounding like a text book analysis of the events that took place.  The idea that keeps popping into my mind is just how blessed I am.

More than I deserve.

As I was visiting with people at Cochlear's Celebration 2015 it just kept reminding me how much I have to be thankful for and how little I appreciate it at times.  I am truly a blessed man.

I am blessed with a wonderful, caring wife, who has stood beside me through the worst of my disease with compassion and understanding. She has been my rock. Even at the times I felt as though she should tie that rock around my neck and let me sink, she has been my anchor to solid ground.

I have 3 amazing kids. Blessed that they are smart, funny, and have their own unique personalities. Seeing me at the depths of my illness has not been easy on them. They don't say much, but I can see it in their eyes and emotions. I have not always been easy on them when really I was just being hard on myself.

My parents have been there from the start of this journey, willing to step in for me when I was unable.

I have my faith and ultimately that is the only thing that matters.

I have even been blessed by having Meniere's disease. If it were not for the fact that I lost my hearing to it, I never would have heard about, or needed a Cochlear implant.  If I never had the surgery, I may never have joined social media.  If I had never joined social media, I never would have found some of the groups from which friendships were born.

If all these things had not happened, I would not have found myself at Celebration 2015 meeting, face to face, people I had met in social media groups.  These people were like immediate family to me.  No, maybe better than family. The connection is real. And deep. And that is pretty amazing.

I am not sure about all I met while there, I can only speak for myself. It was difficult to say goodbye.

However long it is before we meet again will be too long.

Perhaps as time goes on I will be able to ferret out the concepts and lessons I learned from the meetings I attended. Maybe they will come to me as time goes on.

For now, I am content to just sit back and enjoy the memories, and savor the new found friends.

'Til next time

Dennis

Just a guy trying to live with an invisible, potentially debilitating disease.

Sunday, February 8, 2015

From there to hear

I am deaf.

There, I said it.

I AM DEAF!

The first step to recovery or acceptance is to admit you have a problem.  No more hiding it. No more denying it. Now I can move forward.

It has taken me a while to accept this fact and I just hope that wherever you are along your hearing loss journey, you come to accept it at some point as well. The reason for your loss may differ from mine but the end result is still the same. A significant part of who we were is now gone.

Audiogram
Typical Hearing Loss
Typical hearing loss differs completely from hearing loss associated with Meniere's disease, in fact, that difference is one that doctor's use to determine if you indeed have Meniere's.

Typical hearing loss, be it from exposure to loud noises or simply from aging, causes you to lose the high pitches in your hearing. That is why men can no longer hear their wives (unintentionally, of course!), but can hear cars and trucks and other low sounds.

Meniere's hearing loss is just the opposite. It is the low pitches that go first. I can't tell you how many times I would be walking around listening to birds chirping and hearing the telephone ring, but talking to someone right next to me with a low voice was impossible. It was quite common for me to jump when a truck would go by. I wouldn't hear it until I saw it.





My hearing loss. Red circles, right ear (Meniere's disease). Blue boxes, left ear, post gentimicin injections.
                                       
                                       

Along with the loss of sound, you also lose the ability to understand people.  They all sound like this; "mwah mwah mwah mwah mwah". Yup, just like the teachers in the "Charlie Brown" cartoons. It is much easier to tell people that you can't hear than it is to tell them you can't understand them. This generally ends up in them talking louder, which means you now hear "MWAH MWAH MWAH MWAH MWAH". A huge (sarcastic) help.

After I started losing my hearing in my right ear rapidly in 2013, I was wondering what my life would be like. I experienced all the possible ways I would have to change to cope with it. Closed Captions became the norm when watching TV.  Lip reading was picked up just naturally.  Most of the time I needed to have someone with me so I could have them "interpret" what people were saying to me.  I thought I would need to learn sign language.  At home my wife and children resorted to using a pen and paper to communicate.  Talking on the phone became impossible. Texting and e-mail became my preferred methods of communication.

The return of drop attacks prompted me to return to Mayo Clinic to see if anything new was on the horizon for treatment.

I decided to ask if there was anything they could do for my hearing loss.  I truly expected to hear them say no, there is nothing that could help. Instead, the ENT immediately told me I was an excellent candidate for a Cochlear implant. He went on to say that he would be very surprised if I did not get 90% of my hearing back.

I had heard about Cochlear implants, but did not know much about them. I really thought my type of loss could not be helped, even with an implant.

Internal device

In looking at my history and hearing loss, and taking into consideration the fact that my right ear was currently very active with Meniere's symptom's, he decided that it would be appropriate to implant my left ear first.

After completing the implant evaluation and testing, I was implanted with a Cochlear brand implant on August 22, 2013, and activated on September 23, 2013.

To say the results have been amazing would be an understatement. I had immediate understanding from my left ear with the implant. This is an ear that had been 100% deaf for 18 years!

Left ear, post implant
                       
                         





My Processor



   

I will not lie and say it has been without it's challenges, but the journey so far has been amazing.The technology just keeps getting better, as does my knowledge of how to use it.

Unfortunately, my right ear has deteriorated even more since the audiogram above, and the decision has been made to implant the right ear as well.  Many people, including my ENT, say having both ears implanted is far better than just one.  I certainly am hoping so.

My surgery is scheduled for April 8, 2015.

It may seem as though this is a huge undertaking to restore my hearing, and it is, but the other option is one that I would not look forward to.

Embrace the technology. It is not as scary as it may seem. And as one of my audiologists told me, "40 years ago all we had to offer was to tell you to learn sign language".

'Til next time

Dennis

Just a guy trying to live with an invisible, potentially debilitating illness.

Wednesday, February 4, 2015

Stop the insanity!

Funny things happen in the world of science and medicine.  Some of the greatest discoveries are made by complete accident. From Penicillin to plastic to microwave ovens, to x-rays to Viagra (well, this one being a "great" discovery I will leave for your interpretation), all discovered by accident.

One of the "accidents" is something that Meniere's patients are able to benefit from.  Gentamicin had long been used as an antibiotic, but it wasn't until veterinarians across the country started reporting that dogs they were treating with Gentamicin seemed to have problems with their balance, that testing really began to find out why. It turns out that a side effect of it is ototoxicity  to the vestibular and hearing organs.  Now you are wondering, "So what? What does that have to do with stopping vertigo?"

The premise behind treating Meniere's disease is fairly simple.  If the Drs. are able to somehow stop the vertigo, the patients quality of life will go up. There is no cure for this disease, so all treatment revolves around reducing the symptoms to improve the quality of life.  Some treatments and medical interventions are available. I mentioned previously of the the standard course of treatment back in the 1990's (Oral prednisone, diuretic, low sodium diet, niacin, lipoflavanoids), but there are other, more invasive options as well.  Surgeons place shunts in the tube that drains from the Endolympathic Sac. They also enlarge the area around the Sac, known as Sac decompression surgery. Also, they  perform Labyrithectomies, actually removing the semicircular canals, thus eliminating the point of origin of the vertigo attacks.  All of these are still used today on a case by case basis.

My ENT at the time, Dr Facer, did not like the success rate of sac decompression surgeries, and tended to lean toward a more conservative approach.

I had been getting several vertigo attacks each month, along with drop attacks. I had seen the Dr. on a rather regular schedule, and had multiple rounds of testing done to determine the state of my hearing and balance function. None of the traditional treatments were helping.  

It was at an appointment in 1995 when Dr. Facer recommended trying intra- tympanic (through the eardrum) Gentamicin injections.  The reasons were laid out for me, with an explanation of what it would do, as well as risks.

The idea was to damage the balance organ enough to stop the drop attacks, but not enough to destroy the balance function completely.  Of course there were risks. I said earlier that Gentamicin also damages hearing. Why would I risk that? The answer comes from the result of the hearing tests.  

My hearing had already been damaged to the point of not being of any use to me anymore. I was in the 85 to 90 decibel range across all frequencies. There appeared to be no upside to my hearing, therefore, if it is permanently damaged at this point, I really would not notice a difference.  I had 1 perfectly normal ear, I would be able to cope. 


I received the 1st injection in 1995. Following the injection I was left permanently deaf in my left ear. They only test to 120 decibels, and I honestly cannot say that I hear anything at that level. The tests show a response, but it may well be due to the fact that I feel the headphones vibrate, rather than hear the tone.

I also went through physical therapy to help my balance system retrain itself with the damage done.

As for results from this treatment, the vertigo and drop attacks did diminish, but not gone.  Since we were taking a conservative approach, we were just watching for results and if I needed another injection, we would do it.  I received 2 more injections, the last being in 1998.  From 1998 until 2013 my vertigo attacks were reduced to 2 or 3 per year, no more inconvenient than getting the flu, and no drop attacks.

It had done what was intended. It gave me my life back, only a bit different. 

Praise God for "accidents"

'Til next time

Dennis

Just a guy trying to live with an invisible, potentially debilitating illness.