What is SSD really like?

[Kabe]

I'm still waiting on my doc to get back with me but my MRI def. shows a tumor on the right.  I interpolated the size to be about 2 cm x 1.2 cm.  I'm mentally preparing myself for the probable SSD outcome of surgery (should I go that route and that is my gut feeling currently).  I'm certainly jumping the gun here but I like to be as prepared as possible.  Can you describe your experience being SSD?  How did you adjust?  What is it like?  This may sound silly but I find myself covering up my right ear as tightly as possible to get a feel for what it will be like.  I love music and "attempt" to play guitar.  Anyone else able to carry on musically? Its' just an infrequent hobby but I think that listening to music will be a big adjustment. 

Thanks in advance.

Mike.

[Sue]

Hi Mike,

I had GK, so I still have a bit of hearing in my AN ear, but word recognition is gone, so I might as well be deaf in that ear.  The one thing that is unsettling about SSD is that you lose your directional hearing.  If you walk into a busy store and you are gazing about and somebody says May I help you?, you may turn to see who is there and you will usually turn to your hearing side, but the sales person might be on your AN side.  His/Her voice travels around to your good ear and that's where you think they are.  And, on the street, if somebody calls out, "Hey, Mike!", you probably won't know exactly where that person is anymore.  It's a bit disorienting, to say the least. You have to learn to watch for cars in the parking lots and be more alert to your surroundings as your hearing might not be helping you as you are used to it now.  There have been quite a few people on here who have something to do with music and I would guess that it's an adjustment that you make and then, still enjoy your music, just in a different way.  I hate to say this, but you also need to consider the possible tinnitus that accompanies AN's most of the time.  It is the lucky few who don't have some degree of tinnitus.  That can interfere with music appreciation.  Still, it's but another adjustment in the scheme of things.  You might look into BAHA or Croslink hearing aids.  There are many people on here who have found it helpful.

Best of luck to you,

Sue in Vancouver USA

[Kabe]

Thanks Sue.  Those are the things I need to prepare for.  In the grand scheme of things it's something I can and will live with.  I already can't hear that well at all on the right and have a lot of trouble with voice recognition.  So I definitely think SSD is better than facial paralysis. 

Mike.

[Boppie]

Mike, Your tumor is exactly the size of mine at surgery time. 

I had another experience last week that describes my SSD perfectly.  I was showing the door prize I had won at a luncheon of 80 ladies sitting at round top tables.  I announced that I couldn't find a tag in the gift to thank the donor.  The donor (whose voice I recognize as "Liz") spoke out and said, "It's from me".  I knew the voice was out there in front of me but could not find it.  Since I didn't acknowledge the voice right away she poke out again.  I asked, "Where are you, Liz?" as I scanned the room.  She exclaimed as she waved her arm, "Right here!"  There she was sitting twenty feet from me at the 2 o'clock place on my radar!  Well, to say the least I just chuckled and went on to thank her.  All of my friends know about my deafness but still do not understand SSD.  My husband and family laugh along with me about the situations that SSD gets me into.

Life is good.

[Kabe]

Thanks for that.  I'm sure there will be many situations where laughter is the best medicine!  I noticed you have Transear.  How has that worked for you. I'm still researching BAHA and Transear.

Hope it was a nice door prize

[Jim Scott]

Kabe:

Sue has offered a fairly comprehensive overview of what being SSD is like and, I can add a few things.

I need the TV much louder than my wife, which made it uncomfortable for her to watch it with me, so she bought me a set of 'TV Ears'....wireless earphones that attach to the TV speaker and allow me to crank up my sound while the actual sound on the TV speaker is 'normal'.  Here's a link to their website: http://www.tvears.com/.  Not cheap but almost a necessity if you're SSD. 

My wife uses the tactic of waving her arms and calling me in large stores to compensate for my lack of directional hearing.  Otherwise, I have to complete a 360-degree turn to locate her and sometimes, if I don't notice her on the turn, I'll have to do it again!

Noisy restaurants are a problem.  You have to seek an out-of-the-way table or ask your dining partner to 'speak up' while you lean into them in order to hear them.  Better yet, avoid noisy restaurants, which is not always possible i.e. wedding receptions, parties, etc.  People who naturally talk softly (male and female) can be a challenge.

I occasionally have to attend meetings and if there are no more than 8 or 10 people present, I'm O.K.  At a big table with 20 or more people, I struggle to hear, especially if people talk over each other, as they sometimes will.  You do the best you can.  So far, this hasn't been an issue that has given me a big problem.

I was SSD years prior to my AN diagnosis so I've adjusted and learned to cope.  Although most of my good friends know I'm SSD, the majority of my acquaintances don't realize that I'm deaf in one ear.  I think I cope fairly well.  SSD is a handicap but not a disability.  As Sue mentioned, many AN patients with SSD utilize a BAHA or other hearing aid.  I haven't but those who have are usually delighted with them, so this should definitely be an option for you. 

Jim

[Sue]

Yes, noisy restaurants are a real pain!  Having SSD or nearly so, can ruin things like concerts, going to arenas, plays, musicals, theaters, convention centers, etc.  I mean it has to be something I really want to see!  I haven't found ear plugs that work for me yet.  The foam ones you get don't seem to stay in my ear.  I must not know how to put them in correctly.  Or maybe it's not SSD so much as the tinnitus, because that just gets louder and louder and it can drive you nuts!!  But, it's a matter of hanging in there with what you want to do, I guess. 

Anyway, it's just one of the crosses we have to bear, and while not the most fun thing in the world to have to deal with, it certainly doesn't even come close to the worse things we could have to deal with.

Sue in Vancouver USA

[Brendalu]

Mike,

I think the worst thing about SSD is the no directional hearing!  After three years my family and most of my friends still don't get it.  Unlike Jim, I can't tolerate loud TV's.  My hearing is perfect on the left side and very keen.  I don't need people to shout or speak louder for me to hear them....just be standing on my left side.  My hearing was perfect in both ears prior to the surgery so it came as a huge shock to my system, even though I thought I had prepared myself for it.

Good luck!

Brenda

[Kabe]

Thanks all for the insight.  I got some unexpected information from my ENT this afternoon and I must say I feel a bit embarrassed.  He told me that I do not have an AN and that I just have an ear "that sucks".  I told him about the MRI scans that I compared mine to and he said there are so many different levels that it's hard to discern what is what (although some I compared to looked almost exactly the same).  I'm an educated person with multiple advanced degrees but wow do I feel a bit foolish.  So now I have conflicting emotions:

1) I'm still going to get a second opinion (likely from House - thank all of you for the suggestion)
2) I'm still going deaf in my right ear so I expect my SSD will come eventually although perhaps not due to surgery
3) I feel a sort of kinship to all of you on this forum despite only being a part of it for a few days
4) I feel some guilt that you all have been so kind with your time and insights and that I don't want to impose on this forum if I really don't have an AN
5) Most importantly - as far as I can tell there are some really happy people here despite the trauma and life adjustments you've had to deal with.  How refreshing.

My sincerest thanks.

Mike.

[Keeping Up]

Hi Mike

I am a newbie - and had the same feelings as you.  I was lucky though - and get to stay with my little babe of an AN 

I admit I was almost relieved that I had an AN because it gives an explanation to the mild hearing loss and the ringing/fullness in the ear - if I didn't have an AN, then no one would have an explanation (alas, where you are standing).

I agree - people here are tremendously supportive and ready to give info (even if my questions are silly!)

Congrats, I guess - and good luck finding a cause for that funky ear.

[Kaybo]

Mike~
I guess I am the weird one out - I have SSD and have ever since my AN surgery in 1995 at age 25.  Even though it is a pain, and it definitely took some getting used to, I don't think twice about it.  I go to concerts, plays, listen to music (even an iPod), go to the movies, watch TV with my family, sing at church ,whatever...is it what it used to be? NO, but there is a life to live and I am going to live it to the absolute fullest that I can!    The most helpful thing I have found lately is the little quick replay button on the satelite remote (do you know what I am talking about?) - I use it all the time when I miss a line - doesn't seem to bother the family (I don't even use CC or anything wlse when watching TV).  the directional thing is probably the MOST bothersome, but not as huge a problem anymore since my girlies are a bit older...when they were babies & had crawled off to another room and then cried - I would just stand in the middle of the house or run room to room!!  Whispering and learning which was the "good" ear - especially for the little ones is a challenge, but they get it eventually!  How many times have I said, "That's Mommy's ear that doesn't work!!"??
Don't be a stranger even if you don't have an AN - while we are all overjoyed that you don't have that...we'll still be your friends!!  We have some jolly good times around here!

K

[Boppie]

My TransEar comes in handy at times.  But I live in a high heat and humidity climate.  Even a hearing aid can make a person sweat more. The TransEar works very well and when I wear it, I enjoy it.  If I worked outside my home full time I'd need to wear it every day and I could do that.

I had a long conversation with a young woman who has cochlear implants.  We shared the same round top table  (8 ladies) at the luncheon.  She sat exactly opposite me 6 feet away all through the luncheon. She was quite an inspiration!  She lip reads extremely well and uses two digital hearing aids.  I realized that she and I lip read well enough to appear normal.  I can settle for that. 

[leapyrtwins]

Kabe -

I agree with everyone else's insight on SSD.  The problems and experiences they are telling you about are all things I have experienced.

If you do end up SSD - through an AN or something else - keep in mind that some people adjust to it just fine (like Kay and Jim).

Others of us - like me - don't adjust so well, but as you know there are options.  I chose the BAHA and if I've said it once, I've said it a million times - I absolutely love it.

Most TransEar users feel the same way about their choice.

SSD options, like AN treatment options, are personal choices.  Researching your options is a great idea and in the end you'll do what is right for you.

As Kay said, even if you don't have an AN you're welcome here any time; don't hesitate to keep joining us.

Jan

[JerseyGirl2]

Kabe/Mike,

I think you're smart to consider House for a second opinion re: your non-AN diagnosis. Hopefully they can shed a bit more light on your condition other than just "having an ear that sucks." Good luck as you continue to research possible SSD options. I'm happy with my BAHA Intenso.

Catherine (jerseyGirl2)

[Kabe]

Thank you for sharing those valuable insights.  It would be nice to know the cause of my hearing loss.  The doc and I were pretty suspicious that it was an AN.  The symptoms all fit.  I've considered the possibility that there might have been a mix up and the doc read the wrong report/scan.  I'm going to see him again to go over this in person and to talk about hearing aid options etc... In the meantime, I'm going to send my scan/audiology report to House.  Regardless of the cause, I am certainly glad I found this wonderful forum with so many interesting and kind people!

Mike.