SSD frustrations - in need of some support or advice

[mallory]

I've been deaf on my left side since my first surgery about 4 years ago, and that side-effect kind of feel to the wayside because of other more urgent ones.

I'm now back to my normal life, and aside from the occasional balance/dizziness issue I'm doing really well, but I feel like the deafness side effect keeps getting forgotten and ignored. I figured that I would adjust to it over time and learn to compensate, like I have with other issues, but I'm finding that I'm just getting more and more frustrated over time.

Last night I went to a party where there was loud music and the lights were low, and I couldn't hold a conversation with anyone. I already tend to be the kind of person who is on the outskirts at a party, so I feel like my inability to have even a basic conversation makes things even worse and makes me want to socialize even less.

I don't want to use it as an excuse and I don't want to end up feeling sorry for myself, but I find that it's making me feel excluded when I can't keep up with conversations or when I never know what's going on. Overall I feel great, things are going well, and when I think about how much worse it could have been, I'm grateful that things worked out like they did. But every once in a while it catches up with me and I get really down about this one thing that I can't fix.

I guess I'm looking for some people who can relate, or any advice on how I can try to help myself adjust. I know it's not realistic to think I'll never go to a restaurant again, and I don't want to always dread it or use it as an excuse for feeling miserable.

Thanks for listening.

[terisandler]

I found the Phonak BiCROS very helpful.  I had similar issues in very noisy situations.  The audiologist programmed it so I was able to understand conversations even in very noisy restaurants.  I didn't keep it because I was trying to appeal insurance denial for coverage.  I am out of appeals so am going to try just one hearing aid (I have some hearing but very poor word recognition in my AN ear) and if that doesn't help I will purchase the BiCROS.  Have you considered some type of hearing aid or a BAHA?

[arizonajack]

There's a simple solution, Mallory.

Hearing aids.

I'm SSD in my right ear and went through much of what you've experienced.

I've had my Phonak Bi Cros for over a year and a half with a great deal of success.

Sure, loud background noise and music at parties are still a little annoying but I can participate in conversations in spite of the surrounding noise.

My hearing aids are programed for a variety of scenarios and I use a remote control to change the settings to adjust to my surroundings.

You can end your frustration by accepting the fact that you (like me) need hearing aids.

See if your insurance will cover them as a medical necessity.

If it doesn't, buy them anyway.

Phonak is not the only brand that has that kind of system but you can go on Phonak's website and get an idea of how they work.

http://www.phonak.com/us/b2c/en/products/hearing_instruments/cros/overview.html

By the way, the hearing aids are flesh colored, small, and almost invisible. People are often surprised when I tell them I have them.

[Tod]

Even with a BAHA, these kind of events can be very difficult for me. Unfortunately, they are often a part of my job. I tend to try find the quietest are of the room, or at least the area with least echoing. At dinners, I try to with the person I want to talk with most on my good side, but unfortunately that does not always work out, so I will spend a lot of time (and effort) turning my head as much as possible when the person on SSD left side is talking. I will also cup my good ear. I have given up any pretenses of self-consciousness about this - it is basic social survival.

I am not good at small talk. I don't like crowds. And I really detest noisy environments. These social situations are the worst because as the noise level goes up and my body tries to pitch my voice to be heard, I start to lose my voice completely. It takes great effort to be understood without frequent coughing fits.
 
But I have no choice, and so I make it work.

-Tod

[Echo]

I can't offer much advice but I can send my support.  Like you Mallory, I put my hearing issues on the back burner.  In the past year pre Gamma Knife I lost 40% hearing in my AN ear and I'm quite sure I've lost some more since.  My good ear is not 100%. It's been loosing high tones which causes me difficulty hearing conversations in restaurants, or noisy areas, including work.  I've been dealing with so much the past year in making a treatment choice and having treatment, to dealing with vestibular rehab, that researching hearing aids was just to overwhelming, so I learned to cope as best as I can.  So much of your post sounds familiar to me even though I'm not yet completely SSD. 

Maybe now is the time you should consider looking into hearing aids if you have not done so yet.  I've decided to take the plunge and start researching. My next audio test will be in March with my 6 month MRI and I'd like to be prepared when I meet the audiologist.  I know the results will be much different from my last test.  Meanwhile, I look for quieter restaurants, or at least request quieter areas within a restaurant if possible.  I avoid loud parties, preferring to mix with smaller groups. 

I think it's okay to feel sorry for yourself when you occasionally get overwhelmed.  Living with the effects of our AN both pre and post treatment can be challenging but there are answers out there for most of our problems.  Take a deep breath and get going again - you are most definitely not alone in what you are going through.

Cathie

[Jim Scott]

Mallory ~

Many AN/SSD patients have an experience similar to yours...I'm one of them.  I was fortunate in that my hearing in the AN-affected ear v-e-r-y slowly diminished over quite a few years, giving me time to adjust.  I foolishly ignored the hearing loss and compensated until other symptoms forced me to see a doctor.  He ordered an MRI, a 4.5 cm AN was discovered and 'the rest is history'.  The surgery had no effect on my hearing and I continued to adjust.  I still do.  Yes, noisy environments are a challenge for SSD people and I try to avoid them as much as possible.

Most of my friends are aware of my hearing deficit and talk louder or, better yet, on my 'good side'.  I instinctively position myself where my hearing ear faces the speaker.  I use 'TV Ears'® (wireless headphones connected to the TV speaker) to listen to television and that allows my wife to keep the sound at a normal level without depriving me of being able to hear it.  Big help.   

Although I've opted not to use a hearing aid, BAHA or otherwise, that remains an option for me as well as any any AN patient suffering with SSD.  If your SSD is having a severely negative impact on your lifestyle and level of contentment, a hearing device may be your solution. 

Jim

[mallory]

Thanks so much for all of your suggestions and support. I already feel better just getting it all out there.

I'd kind of ruled out the idea of a hearing aid a few years ago when I was told by my doctor that BAHA surgery wasn't covered by my healthcare plan and that most of his patients found that having a hearing aid in their good ear just impeded their hearing. I also had family members make some dismissive comments about my hearing loss, so that also made me feel that this was something I simply needed to adjust to.

If it's still bothering me after all this time, I think it may be time to start looking into my options again.

Thanks again.

[arizonajack]

I'd kind of ruled out the idea of a hearing aid a few years ago when I was told by my doctor that BAHA surgery wasn't covered by my healthcare plan

Did he read your policy?

Did you read your policy?

I'm a 35 year veteran of the insurance industry and I can guarantee you one thing. You don't rely on doctors for insurance advice and you don't rely on insurance agents for brain surgery. Get it?

most of his patients found that having a hearing aid in their good ear just impeded their hearing.

Baloney. That doctor is an idiot.

I also had family members make some dismissive comments about my hearing loss, so that also made me feel that this was something I simply needed to adjust to.

I can't even begin to tell you my reaction to that.

 

[mallory]

I'd kind of ruled out the idea of a hearing aid a few years ago when I was told by my doctor that BAHA surgery wasn't covered by my healthcare plan

Did he read your policy?

Did you read your policy?

I'm a 35 year veteran of the insurance industry and I can guarantee you one thing. You don't rely on doctors for insurance advice and you don't rely on insurance agents for brain surgery. Get it?

Sorry, what I meant was that I'm in Canada, so he knew that the surgery wasn't covered by our provincial plan. I have other insurance through work, and I don't think it would be covered, but I could look into it.

At the time, his comment about a hearing aid in the good ear made sense, but now I'm starting to question that!

[terisandler]

The best way to prove the doctor is right or wrong is to try out the CROS or BiCROS and see for yourself.  Here in the US there is generally a trial period of at least 30 days, sometimes 60 days.  Not sure how that works in Canada.  Sometimes there is a deposit that is non refundable if it doesn't work out.  I did not have that issue when I returned the BiCROS and won't if I decide not to keep the single unit I am testing now. 

[Gloria Nailor]

so sorry to hear you are frustrated, I think we all know how you feel - I didn't listen to the radio for almost a year, because it sounded different to me - but I have gotten used to my deafness - It is definately harder to hear in noisier settings - I just keep asking whomever I am talking with to please repeat themselves - I also make sure I sit with my good ear towards the people I am visiting with - It can be very frustrating though - sometimes I just smile and act like I heard them, which really isn't fair to them or me.  I'm not at the point of looking into a hearing device yet.  I do fear that I will lose hearing in my good ear and be completely deaf, it's amazing what you take for granted, I would never have thought I would be deaf in one ear.  I find myself feeling sorry for myself at times also, but then I concentrate on the more positive outcomes after surgery and not my deafness.  It's nice to put that ear up and not hear anything when you are trying to sleep : ) It is hard in a car when I am driving and the passenger is on the side of my deaf ear, but I just ask them to talk louder.  Maybe you are ready for a hearing device, good luck - I know where you are coming from.  Take care.

[mk]

Mallory,

I was under the impression that some provincial plans do cover the BAHA surgery. Have you checked this out further? Perhaps your doctor is not well informed?

Also here in Ontario the provincial plan contributes toward the cost of a hearing aid. I got $500 back for my Phonak Cros. And yes, there is a trial period if you decided to try them.

Having said all this, I can't say that I have found the CROS to be particularly helpful in very noisy environments. Sometimes I even have to turn them off, because they pick up the surrounding noise. They do help in other cases, with some more surround sound, being able to tell if someone is talking to my bad ear and in the car, with the passenger on the side of the deaf ear.

Marianna

[TexasSprinter]

Mallory--I lost hearing in my right ear last December during my AN surgery.  I'm also struggling with the adjustment.  I have a Cros device, but I find it most useful in quieter environments, such as at work or when my kids whisper in my deaf ear (where the Cros picks it up and transmits to my good ear).  The Cros does not seem to help in noisy rooms, no matter how I adjust it.  In a noisy room, I try to sit or stand someplace where I have a wall to my back, which helps.  Whether in a noisy room or elsewhere, I find myself looking more carefully at the speaker's mouth to help understand.  Bottom line for me:  SSD sucks but I try to keep it in perspective and thank God for my good ear and my otherwise general good health.  (Except for my tumor, which is still there!) 

[Imcamodchick88]

Mallory,

I can relate to you whole heartedly. When my friends want to go out, I've found the best thing to do is to be near a corner. And have someone with you who knows the situation. My boyfriend likes to joke he's going to get me a sign that says "don't talk on that side, she won't hear you" because he gets sick of saying it. However, having someone who can whisper in your good ear is always helpful. I don't have a hearing aid, I can't possibly afford it (even with insurance) as a college student. If I'm out, I make sure and have someone with me. If I'm alone, you will find me in a corner, normally nodding along. Even in labs, you'll hear me say "I'm sorry, I didn't hear you, can you repeat that?"

One useful thing out of it, is if I'm washing dishes or clothes, and my niece or my mom asks me to do something, the water normally covers it up. I honestly didn't hear them, so I can't get in trouble later!

Kristin

[keithk]

I have the same problem when it is noisy. I turn my Baha off and that helps a little. I am ordering musician earplugs trom Amazon and see how that works with the noise.