Thursday, October 13, 2016

A visit with my ENT

This last August I needed to refill my prescription for my diuretic. Since I have been rather calm on the vertigo front, I sent a message to my ENT asking if it was time to consider dropping this from my treatment. The reply I got back said I should stay on the diuretic, but it probably would be a good idea to check in with my Dr. to touch base with how things were.

Today was that appointment.

Here is a highly paraphrased dialogue of my visit:

(knock on door)

Doctor walks in and shakes my hand

"You scored very well on your last audiogram."
(Smiling from ear to ear)

me "Yes, I'm beyond thrilled."

Dr. "So, what's it like having two ears?"  (still smiling form ear to ear)

me "I don't like either one by themselves anymore, but together, I'm beyond thrilled. (chuckling)
       Congratulations on your being elected to president of the American Cochlear Implant Association(ACIA)!"

"Thank you. It's great to be part of an organization trying to raise awareness of cochlear implants. The executive director is a former Cochlear employee and she thrives on advocacy. She lives in Washington and knows how Washington works."

      "So, what going on with your Meniere's?"

"Well, I'm here basically to check in with you on how things are going and to get your opinion on stopping the meds."

"I really have no problem with people wanting to taper off the diuretic if it has been a quite a while since the last episode. If they come back, we know the med was helping and if you go back on it, it should knock them down pretty quick again. If they aren't causing you much trouble, it may just be worth it to stay on them. It's better than the risk of attacks coming back."

"I don't really have a problem with them, just checking.  I do have a couple questions, though. Is there anything that we can do about the tinnitus?"

"Well, no. Usually one of the treatments is cochlear implants, but you already have those."

"And I am grateful because if I had to listen to nothing but the ringing all day I probably would be on anti-depressants. It drives me mad some days. My right ear is just howling today."

"Does it interfere with your sleep? I know when you take off the processors, it could be a challenge. There are some things you could try, but it means another pill. Usually they are the type of things that dull the nerves. I'll put a note in my notes so your primary care Dr. can see it. Then you can discuss it with them. They may have reasons to monitor things with you. They will also help you sleep, but I can't say it will definitely help the tinnitus."

"The other issue I have is that you preserved the hearing, but all I hear is high pitched squeaks and I actually hear better in noise if I plug my right ear. Any suggestions?"

"I would consider a custom molded ear plug. They (audiologist) can either attach it like they would the acoustic component on your processor, but only solid, or just a custom molded earplug, so it is comfortable. There is no harm in wearing one. No worse than if it were a hearing aid."
He starts chuckling, "It's bad that your residual hearing actually makes you hear worse."

"It's better than my residual hearing being all the hearing I have."

(Both laugh)

"It seems like it has been much longer than 3 years than I have had the implants. It is such a life changing experience. I have become a volunteer for Cochlear. It's great to be able to help others."

"The biggest challenge we have is getting past the decision to have the implant. People are afraid of the surgery. They are afraid it won't work."

"If they can't be helped by hearing aids, how much worse can they get if it doesn't work? It has been so much of a life altering thing for me."

"You know that. We know that in the clinic. It is just a challenge to convince others. I'm glad you are actively involved in advocating for people."
                              "It was nice seeing you again."

We again shook hands, and I was off.

We will see if I attempt to taper off the diuretic. I'm not sure the risk is worth it. If I keep having sleep issues, I may consider the other med. If it reduces the dreaded tinnitus as well, BONUS.

It's just great that I have been relatively event free. I'll take it, because even as he said, there isn't really any way to know they are gone until they are gone. And I really don't want the vertigo back.

'til next time


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

Tuesday, October 4, 2016

Three years and it keeps improving

I realize that I spend a good deal of time talking about the fact that I have cochlear implants. The reason I do is not to convince anyone that they must get implants for their hearing loss, it's more a way to show people what  the outcome can be if they do choose this route.

I am fully aware of the controversy that is sometimes surrounding the idea of Cochlear implants. On one hand there are those who see it as a threat to their culture and, not only an unwanted "fix" to a problem they don't see themselves having, but also an unneeded intervention in the lives of people who are deaf.

On the other hand, there countless numbers of people who are not part of this culture. These are likely people who were not born hard of hearing or deaf, but lost it later in life. Many of these people have a steep learning curve and high levels of stress over the loss of one of their senses. They see the loss of their hearing as a loss of their culture, much in the same way as those born deaf see hearing restoration as a loss of theirs.

It's actually rather sad that there needs to be such a division between the two extremes. I don't fault anyone for not being interested in a technology to allow them to hear. I wish all would feel the same towards those like myself who are willing to use it as a way to cope with the loss of their hearing.

But that isn't really what this post is about.

It's about my personal experience with the implants.

If you have not read my entire story, here it is, in a nutshell.

I was born hearing. I grew up hearing. Perfect hearing. When I was 27, I developed Meniere's disease and by the time I was 29, I was deaf, stone deaf, in my left ear and I lived with one ear for 18 years. One deaf, one perfectly normal. Although I developed Meniere's in my right ear at around 40 it didn't permanently affect my hearing until I was 47. Then that ear crashed.

I was stuck. I couldn't hear and I didn't know any sign language. Communication was pen and paper or text message or email. That was it.

When the idea of Cochlear implants was tossed out, I looked at it as a risk/reward scenario. There wasn't much downside risk. You could only get so deaf. Yet the upside reward potential was seemingly unlimited. Sure, there was the risk it wouldn't work, but does that make me worse off than doing nothing?

So I went for it. And never looked back.

My activation day for ear one was shocking. Before turning it on, I heard zero, nothing, nada, from my left ear. After turning it on I got 56% of the words correct.

All with the push of a button.

That was 3 years ago for my left ear. September 26, 2013.

I was just in for a tune up programming session and with some adjustments to my settings, I have reached all time high scores since implant.

My left ear alone now stands at 62% of the words and 74% of the sentences, the hard lists. My audiologist says this is what they expect to see form an implant.

My right ear alone is 74% of the words and 91% of the sentences. Same hard words and sentences, but different lists so you can't cheat.

Both ears together I'm at 78% of the words and 95% of the sentences.

I don't publish these as a "look at me" effort, but more to show people what is possible. I may be achieving greater than expected results, but it happens. You don't get averages without outliers. But if you want to be honest about what implants are likely to do, hearing 75% of what you are now missing is far better than missing 100%.

If you are ready and willing to accept being deaf, that's fine with me. But if the thought of living without so much of what you know as normal is frightening, there are alternatives.

They work. And I'm proof.

'til next time


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

Friday, September 16, 2016

Why does it matter that there is a thing called Balance Awareness Week?

I'm a bit tardy on this week's meaning and importance, but really, for me, there is no such thing as one week out of the year that balance awareness matters.

It's a challenge to explain to others that do not have compromised balance systems what it is like to live without normal balance function. They see me walk. They see me drive. I'm not incapacitated because of my loss of vestibular function.

What they don't see is the frequent struggles I have in everyday life because they don't live with me. They only see me when I am doing well.

I used to enjoy playing a little basketball. I was never on any type of organized team, but I liked to join a pick up game in my early years. Now I have kids and the elementary school has a basketball program. At the end of the season they have a parent/child game. I can't play. I've tried, but all it takes is to spin around a couple times and I'm looking for something to grab onto. That part of life is gone.

I used to play softball. That's gone too.

Riding bike used to be one of my favorite childhood activities. It has been years since I have been on a two wheeled bike. The last time I was, I was shocked I could keep it upright. My balance has officially (testing proven) gotten worse since then.

If my bicycle is gone, so is the thought of ever riding motorcycle again.

And these are just the optional things in life. They aren't necessary, but enjoyable.

People should see me trying to walk in the dark. Or should I say stumble and grope in the dark. Don't put me in a room with no widows and turn out the lights unless you want to hear a crash and thud because chances are pretty good I'm tipping over.

Walking in snow is fun. As is uneven ground. More stumble and grab.

I've gotten so I don't really like to drive at night on bumpy roads. The headlights dance, or is it my eyes? Forget long times on a tractor or other equipment without a suspension system.

There is one benefit. When your kids see you on the riding lawn mower and you get off and vomit and get back on to finish, they step up quickly to mow for you.

When we had upright silos on the farm, I would climb them for giggles pre- Meniere's. Now I get the chills watching someone stand on a cliff on TV. Climbing on roofs will be something I doubt I will ever do again. Ladders are enough of a challenge.

To be quite honest, it stinks.

So, if you know someone with impaired balance function, take what's left of this week to support a program that helps people cope with the loss. VEDA is a good example. You can visit their website at and make a donation, or find a way to volunteer.

Because balance matters more than one week in September.

'Til next time


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

Wednesday, August 24, 2016

When Motavational Quotes and Speakers Aren't

"Winners never quit, and quitters never win"

Who hasn't seen that quote. I understand the reasoning behind it. When you are facing adversity, keep going. But is that really good advice?

I recently had a friend put out this quote "97% of the people who quit too soon now work for the 3% who didn't".

This struck a nerve with me. Since when is the ultimate goal of anyone to never step back and see if what they are doing is even the thing they should be doing? Is that "quitting too soon"?

With the recently completed Olympics, we got to celebrate athletes and their abilities for 16 days. It would be interesting to know how many of these athletes have changed the event or specialty they compete in over their careers. Did they "quit too soon"? What if the shot put throwers really wanted to be and worked at being swimmers? Or Gymnasts really desired to be pole vaulters? Did they quit too soon on their dreams?

The reason I post this should be obvious. Not everyone will be successful at whatever they find a passion for, but learning something completely unfamiliar may bring huge success. In the case of athletes, how many hundreds of thousands participate in high school athletics? Reduce that to how many thousands in college and even fewer professionally.

If only they all would not have "quit too soon"!

In the case of people with a chronic illness, their health dictates what they will do. Some will do much, some less. And yet it is important to determine what "less" really is. Is it really less?

My wife works in long term care. There is a debate about quality of life that surfaces from time to time in the care of the elderly. One argument is that when mom or grandma is no longer able to enjoy her life, their life has no value. I find that to be incredibly short sighted. Perhaps their value is in teaching the caregivers and family humility and respect for the elderly. Or patience. Or empathy.

Is that of less value than being out in the world pushing and striving to get ahead?

I've never heard a motivational speaker or seen a motivational quote that says "If you want to get ahead, you need to step back". Maybe they should.

People need to stop what they are doing when what they are doing is getting them nowhere. I believe a familiar quote goes something like this, "Insanity is doing the same thing over and over again expecting different results".

Sounds like sometimes quitting too soon is the right thing to do.

If you are a fan of the motivational gurus of today, good for you. Personally, I find their talk pointless drivel. We really all find our drive from within. It is a long life if you have to be constantly pushed and prodded to keep going. At times, yes. Constantly, yikes!

The point of this whole post is that if you are pushing and succeeding, good for you! If you are struggling right now, maybe your purpose is to step back, look at the real purpose in your life, and be as humble and patient and kind as you can to those you depend on. Your purpose might be to benefit them.

And maybe, just maybe, by "quitting too soon" and redirecting your efforts, you will end up being the 1% that advises the 3% that employs the 96% on how to be a better human being rather than just a successful one.

'Til next time


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

Thursday, August 18, 2016

I know it caused it, and I can't prove it!

Anyone who has experienced Crisis of Tumarken, aka drop attacks, knows they are likely the most dangerous part of the complex condition of Meniere's disease. I've seen too many photos of broken arms, smashed and bleeding faces, and stories of concussions because of them. I'm also very thankful that my experiences with them have scared the bejeepers out of me and those who have witnessed them, yet have left me virtually unharmed. One minute you are upright, the next you are picking yourself off the ground. Always aware of what happened, yet completely clueless as to what happened.

My history with these started early on with the disease. And often. It usually involved me falling to the right when I first started getting them. Usually I was standing...............on concrete. My poor right shoulder bore the brunt of the blow. Yet I was fortunate to not have any immediate injuries that required medical intervention.

That was in the 1990's.

As time has worn on, I started having bursitis in that shoulder. I would get a deep tissue massage and it would go away for a while. Perhaps I would get bursitis and massage 3 times a year. Then 6. Then massage started getting expensive, and bursitis got more frequent.

Ice and heat. Heat and Ice. Repeatedly.

I really can't tell you how long I have been dealing with this chronic, returning bursitis, but it has been at a minimum 5 years.

I tried stretches. As I mentioned, I used ice and heat and massage. I tried chiropractic. This allowed me to function.

In the last six months the pain kept building and the range of motion kept shrinking. The strength was going away as well. It finally got to the point that trying to change a lightbulb cause burning pain down my arm.

As much as I didn't want to, it was time to check it out. Time for a trip to an orthopedist. They sent me to physical therapy. 3 weeks of that made it hurt worse and my range of motion didn't improve much. We tried a cortisone shot in the shoulder to lessen the pain to allow me to work past the pain points. It never touched it.

After some discussions, we felt the best option was for a scope of the shoulder to fix whatever they found. It is a bit unnerving to go into a surgical procedure with everything from a simple cleanup to rotator cuff repair up to, but not including a shoulder replacement on the table.

That was done 2 weeks ago, and if I were to guess what would be done on the way in to surgery, I would have guessed rotator cuff. I would have been wrong. Instead, I got the best possible outcome, a general cleanup of the shoulder and having them break through a fair amount of scar tissue while I was asleep. No major damage at all.

Now I have to endure more physical therapy, but it at least doesn't hurt near as bad and my range of motion is returning quickly.

Was it the drop attacks and falling on my shoulder so many times starting so many years ago? There is no way to know for sure. All I can do is speculate and use circumstantial evidence: I fell on my right shoulder. I had recurring bursitis in my right shoulder. My right shoulder had a substantial amount of scar tissue and inflammation.

But I can't prove it.

'Til next time


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

Tuesday, August 2, 2016

A Weekend With a Menerian

Having just returned from a weekend wedding for my God daughter, I thought it would be a good idea to share what a weekend (or any 2 days, for that matter) might be like with Meniere's disease.

Friday morning was spent getting packed and ready to go on a 5 to 6 hour drive for the wedding. Yeah, it was a hike. Thankfully my daughter needed some hours for her drivers license. That got me off the hook for driving.

We left home around 1 pm and because of a detour to see the college campus my oldest will be attending, we arrived at our hotel around 8:30 pm. Then it was off to a pre-wedding gathering until 11. I admit I enjoyed a beer. Singular. And I ate the food they had prepared. And it was a late night, getting to bed around 11:30 pm.

Saturday morning I woke up later than usual, but it was a Saturday, and I was on a mini vacation. Who cares what time I got up! After eating the free breakfast, which consisted of 1 waffle and 1 cup of decaf coffee, I returned to my room. Was that fun. It was time to greet the walls. The longer I sat in my room, the worse I felt. Lovely. I just traveled a long way to have a "hello walls" kind of day. The longer I sat, the less I was convinced my breakfast would stay down, or I would stay up. Finally I gave in and crashed in bed. Did I mention that this was my God-daughter's wedding day? And that I had traveled a long distance for it? Yeah, nice. Real nice.

I managed to stay up for 1 1/2 hours before crashing in a Meniere's induced heavy sleep, for 4 hours.

When I did wake up, there was 2 hours before the wedding. The normal headache and exhaustion still was there. It took me 45 minutes to get the energy to shower. I did feel a bit better following, but I wasn't convinced I would make an attempt to go to the wedding at all.

Being one to keep pushing, I went. And to the reception. And the dance.

As the night wore on, I did start to feel better and better. As the dance started, I was sitting right on the edge of the dance floor. The music wasn't loud. The lights weren't bad until............that blasted green one. I have no idea why green bothered. I am assuming I am Superman and the green light was Kryptonite! It was brutal and I removed myself to the back of the hall, then outside, where the brides mother (and very dear friend) asked how I was doing. That is one couple with great empathy for people. It's nice to have those kind of people in your life.

We retired early from the dance and wouldn't you know it, I sat there at 10:30 at night, wide awake and feeling the best I had all day.

The trip home was uneventful and I did all the driving. One particularly bumpy stretch was beginning to mess with my eyes, but we made it through it. For the first time traffic was a bit bothersome as well.

I highly doubt one beer is what did me in on the trip. I've had one before and always limit my intake. Perhaps it was the whole day being off from my usual.

I don't know, and I am not one to dwell on trying to figure it out. To me, that's the fastest way to insanity with this.

But at least I went, I survived, and made my God-daughter very glad I was there.

And Meniere's still sucks.

'Til next time


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

Saturday, July 23, 2016

Hearing Loss is Hearing Loss is Hearing Loss, Right? Think Again!

  • About 20 percent of Americans, 48 million, report some degree of hearing loss.
  • At age 65, one out of three people has a hearing loss.
  • 60 percent of the people with hearing loss are either in the work force or in educational settings.
  • While people in the workplace with the mildest hearing losses show little or no drop in income compared to their normal hearing peers, as the hearing loss increases, so does the reduction in compensation.
  • About 2-3 of every 1,000 children are hard of hearing or deaf
  • Estimated that 30 school children per 1,000 have a hearing loss.


Staggering statistics, if you really think about it. And here is another. According to the CDC in the US, 70% of young adults with hearing loss are employed. That means a 30% unemployment rate for young adults with a hearing loss. (

But is all hearing loss the same? After all, if you can't hear, you can't hear, right? Wrong.

Hearing loss is as different as the person with it. To start with, you have different degrees of hearing loss.

The picture above shows what a typical audiogram may look like for a person with hearing loss. The frequencies refer to the pitch. Low frequency, low pitch sounds. High frequency, high pitch sounds.

It also shows the different decibels of hearing loss. In this case, low tones are normal, but as the frequency increases, it falls through mild, to moderate, to severe. This person would not hear women's voices well. Higher pitches would be lost.

But that is only part of the story. It only shows the level of loss, not the kind of loss. Yes, there are different kinds of hearing loss.

Hearing loss comes in three flavors, if you will. They are conductive loss, sensorineural loss, and combined loss.

Conductive loss happens when there is an obstruction in the flow of sound to the inner ear (cochlea). The inner ear is where "hearing" takes place. (Really, it takes place in the brain, but that is another subject.) Some causes of conductive hearing loss include:
  • Fluid in the middle ear from colds
  • Ear infection (otitis media)
  • Allergies (serous otitis media)
  • Poor eustachian tube function
  • Perforated eardrum
  • Benign tumors
  • Impacted earwax (cerumen)
  • Infection in the ear canal (external otitis)
  • Swimmer's Ear (otitis ecxterna)
  • Presence of a foreign body
  • Absence or malformation of the outer ear, ear canal, or middle ear
Hearing aids would probably perform poorly, or not at all, in this type of hearing loss. Making things louder when they can't get into the cochlea is of no use. And chances are, the cochlea may be perfectly healthy.

What needs to happen is for the underlying cause to be fixed, in some of the cases, or for the sound to find another route to the cochlea. This can be done with bone conduction. Some examples are bone conducting headphones and bone anchored hearing aids, but it takes a healthy cochlea to work.

Notice what wasn't on the list of causes of conductive loss? Meniere's disease. That is because that type of hearing loss is the second type, sensorineural.

Sensorineural loss happens when the tiny hairs in the cochlea are damaged or broken. The sound gets to the cochlea, but how it interacts with the hairs is changed. Instead of it flowing across them at an even rate, some are bent or missing, and so are those pitches in hearing. That is why things sound off. The letter T sounds like the letter D, so Tom sounds like Dom, or Dumb. Or it is missing completely and sounds like OM. That is why comprehension of words and conversations become hard. Things sound different or aren't there. In the case of Meniere's, the low pitches go first, so all you may hear is TA instead of Tom. Setaces beco ipossa to udderstad. (Sentences become impossible to understand) See what's missing?

Sensorineural is typical hearing loss. It is the type that happens with aging, as shown in the picture, or noise exposure, or disease, such as Meniere's. The only difference is the slope. With Meniere's, the slope reverses from the picture and is called, surprisingly, reverse slope hearing loss.

This type of loss CAN be helped with hearing aids up to the point of severe or profound loss. After that, the sounds are amplified to such a degree that things are loud, very loud, and likely still not able to be understood. That is where advance solutions, such as cochlear implants come in.

The third type of hearing loss is a combination of conductive and sensorineural. It takes the best (or worst) of both and puts them together. Challenging, but not necessarily impossible to help.

I think it is wise to learn the types and degree of your loss before going out and spending endless money on things that will never help you hear. That only leads to frustration and aggravation.

If your current hearing specialist hasn't or doesn't help you understand these things, find a new one. It's your ears and your hearing. You deserve to have it explained to you in a way you understand and to be helped in a way that does more than line their wallets. Far too many hearing aid dispensers will put a hearing aid on anything to gain a sale. Their goal should be to help people they can actually help and send those they can't to someone who can.

'Til next time


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