Author Topic: What's SSD like? How bad is it?  (Read 5498 times)

Greece Lover

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What's SSD like? How bad is it?
« on: April 29, 2016, 07:16:40 am »
I'm scheduled for surgery May 9.  I have a 65% chance of saving my hearing on my AN side.  My hearing in that ear right now is pretty decent.  But, I'm curious to know what it's like to wake up from the surgery and be deaf on one side.  Is it something you get used to over time?  I want to stay positive, but also want to go into it with my eye wide open about the possibilities. thanks!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

caryawilson

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Re: What's SSD like? How bad is it?
« Reply #1 on: April 29, 2016, 09:02:55 am »
When I was first diagnosed, and the thought of SSD was terrifying and confusing. I'm sure similar to where you are today.

However, for me with one good ear and SSD, life is extremely simple. There are "situations" that are impossible to hear, such as when someone is standing next to your deaf ear, such as sitting on a plane, rsitting at a estaurant, standing in line or walking side by side. If the person to s directly near your deaf ear, you won't hear. I make sure in all these situations my friends are on my good ear side. For example, if I go to a football game with frienda, sitting in the middle of my group makes it really hard to hear the people on my deaf ear. So I make it a point to sit at the end next to my good ear.

Simple. Adjusty life a little. All other situations are easy.

Some people go with CROS or BAHA hearings aids to fix this situation and they work really well for this scenario. However they are not good at filtering noise such as the crinkling of a grocery bag or rain, so it amplifies these background noise.

Fore. No issue with SSD. I could see how the hearing aids help.

Oh yeah.. Little issues finding my ringing cell phone since SSD has no direction to locate sounds.

Note: sleeping is amazing. Put good ear in pillow and you can sleep in a room full of noisy kids.


4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

Greece Lover

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Re: What's SSD like? How bad is it?
« Reply #2 on: April 29, 2016, 10:02:14 am »
thanks!  Ignoring loud kids could come in very handy!

I've read studies that hearing loss is the only the third quality of life issue for people with AN, so I'm hoping that if that's my worst case scenario, hopefully its not too bad. Going to hope for the best but plan for the worst.

Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

caryawilson

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Re: What's SSD like? How bad is it?
« Reply #3 on: April 29, 2016, 10:50:45 am »
Honestly.. Hearing loss.. With a good ear.. Is easy.

Now.. Tinnitus.. For me is constant.. But I'm good at ignoring it.  If it bothers you, this can be tricky to eliminate. Kinda random. Best bet.. Ignore it.. If you can.

Balance.. My mottto.. If it makes me sick or dizzy.. I keep doing it until my brain stops making me dizzy / sick. So far so good and I have no vestibular issues.. Another popular issue that is tough to fix.

Defitely not full list but appears to the more popular ones.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

arizonajack

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Re: What's SSD like? How bad is it?
« Reply #4 on: April 29, 2016, 01:14:10 pm »
But, I'm curious to know what it's like to wake up from the surgery and be deaf on one side.  Is it something you get used to over time? 

The reality of SSD:

It's a ***** (female dog), it's a pain in the butt, it's tragic, it's sad.

But, like any other bad thing that happens to us in our lives, we adjust, we cope, we move forward as best we can.

I've been SSD for 4 years. I don't like it but I have accepted it and do the best I can with it.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

researcher

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Re: What's SSD like? How bad is it?
« Reply #5 on: April 29, 2016, 01:21:08 pm »
Hi!  I went into surgery with good hearing on my AN side and came out SSD. Never thought that would happen. You are smart to realize that it could. I have loud buzzing tinnitus in the deaf ear. The tinnitus is approximately twice as loud as before the surgery.

Something to do before surgery is to listen to your albums on your stereo just in case you lose your hearing. Someone on this forum had suggested it (not directly to me).

I am a few months from my surgery and a few things are somewhat distressing. I joined a few meetup groups and we meet at restaurants. The noise level is extremely difficult for me. It is as if my friend's voices blend in with the noises in the restaurant to the point where I just have to "lipread". It has been disheartening and I will probably quit the clubs. I didn't want to tell everyone I meet that I can't hear very well. I think the cashiers at the grocery store think I am not listening to them. I find that I have to be scanning any potential people that are near me in case they speak to me. The problem is you can't determine the direction of the sounds.

Other than that, SSD has been doable. I will be looking into hearing aids later on. I will try to do without them for awhile.

Hopefully, you will come out of this with your hearing. Good luck to you.

feline

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Re: What's SSD like? How bad is it?
« Reply #6 on: April 29, 2016, 02:02:55 pm »
SSD is a piece of cake it is the dry eye no tears and putting drops in your eye is pain in the butt, does everyone agree?
Feline
Walnut size AN removed on June 30 2014 at Stanford with Dr Chang and Dr Blevins facial paralysis, no blink ,no hearing but otherwise feel good otherwise

LakeErie

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Re: What's SSD like? How bad is it?
« Reply #7 on: April 29, 2016, 02:06:35 pm »
Like other complications from surgery, I adapted to SSD and it became less noticeable as time progressed. It is impossible to locate sounds. If a car starts in a parking lot I have to stop and scan the environment to locate the car so I know how to proceed. If many people are talking or there is background noise like music I cannot hear much of anything as I cannot pick one person's voice out, no ability to discriminate. But I am accustomed to the limitations now and compensate the best I can. I am so used to it now that it seems almost normal to me after four and a half years since surgery.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

arizonajack

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Re: What's SSD like? How bad is it?
« Reply #8 on: April 29, 2016, 06:42:56 pm »
SSD is a piece of cake it is the dry eye no tears and putting drops in your eye is pain in the butt, does everyone agree?
Feline

Ironically, to  me, the dry eyes is the lesser of two weevils (everybody should know that joke by now).

Mine occur just at night. I wake up in the middle of the night with my eyelids stuck to my eyeballs. I long ago figured out that if I apply the drops before opening my eyes and pull the lids straight outward, they pop without pain and I can go to the bathroom and then go back to bed. A few more drops in the AM and I'm OK all day.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

ccooper

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Re: What's SSD like? How bad is it?
« Reply #9 on: April 29, 2016, 09:47:01 pm »
SSD is a piece of cake it is the dry eye no tears and putting drops in your eye is pain in the butt, does everyone agree?
Feline

Couldn't agree more! The SSD is frustrating is social situations or when my phone is ringing. Otherwise I'm very surprised at how little it bothers me. But yes, the dry eye is the worst!
37 yr old female
3.4x3x2.6
Retrosigmoid February 2016 at UC Health
Oops they forgot to tell me tumor was left behind
Doubled in size
Re-do Retrosigmoid at House July 2016
SSD, Facial Paralysis but almost recovered

GP9

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Re: What's SSD like? How bad is it?
« Reply #10 on: June 04, 2016, 11:04:12 pm »
I was starting to loose hearing in my left ear. I went to the GP, and he said it was wax. This is not surprising, since I wear ear plugs at work. That was cleaned up and things improved somewhat.

A few weeks later I got an early phone call. The nightstand with the phone was on my left. The voice sounded tinny. I mentioned it to my mother in law, who is a RN. She got me the name of an ENT. I called him, and was told to come in. After seeing nothing physically wrong, he had me get a MRI.

I ended up having GK, and my remaining hearing diminished. At first background noise was tough to deal with. As a locomotive engineer, the engine cab is loud. Most have the radio on the left side, which is my deaf side. As a result, I was supplied David Clark headphones. In my job, I'm also a union official. This means attending many meetings. At first this was a real pain. Dinner meetings were the worst.

The part about not being able to tell where sound comes from is true. If my cell phone is misplaced, it's hard to tell where it is ringing from. The other day my family was shopping. I was looking at something, and my family slipped down an aisle. I called out to them, but couldn't tell where they were.

To sum up a long story, it gets somewhat better, as you get used to it. In meetings, try to sit in the spot where you can hear. My friends and colleagues usually ask me which spot will work best.

Sometimes things don't work out. I was first out in line at the bank. The teller on the far left said, " Next please." I couldn't hear her. Luckily the guy behind me got my attention.

I know that I sometimes get people annoyed by having them repeat. Sometimes I can't understand the whole sentence. The tone and pitch of the voice matter. Those how have a fuller voice are better.

Kristena

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Re: What's SSD like? How bad is it?
« Reply #11 on: June 06, 2016, 10:08:45 am »
Funny story. When I was in the hospital on day two following my surgery, a co-worker called to check on me. I kept saying, "I can barely hear you...can you speak up?" I didn't even realize at the time that I had lost my hearing, because my hearing was perfect going in and wasn't thought of as a real possibility. And I don't think I even realized it at the time. But it's funny now to think that she must have been practically screaming into her phone since I must have been hearing her with my other ear.  :D

Just curious...what is the full list of quality of life issues? My #1 was my eye, but now that that's much improved it would have to be synkinesis. Luckily, I don't suffer from debilitating headaches, because I think that would have to be #1 for anyone who has them.
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

james e

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Re: What's SSD like? How bad is it?
« Reply #12 on: June 28, 2016, 01:13:23 pm »
The worst part for me is not being able to locate the source of the sound. I can hear my phone ringing, and I have no idea where it is.

InnerGrace

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Re: What's SSD like? How bad is it?
« Reply #13 on: June 28, 2016, 04:58:00 pm »
Micah,

Knowing that you have already had your surgery and are well on your road to recovery, I thought I'd just put my 2 cents in on how I find being SSD.   I am now 4 weeks post op and I believe that my nerves and all are still settling and I haven't had a post op visit with my surgical ENT yet so I'm not sure how they would rate my hearing..... BUT, it is just about good as gone, however, strange thing... there is JUST enough that when I am driving, (I am left SSD), and I have the windows down, I can hear in my left ear the cars passing out my driver window... when I have someone sitting on the left side of me, and it's in a somewhat quiet room, I can tell they are on the left side of me.. but put an earbud in my ear????  Can't hear ANYTHING!  lol  Why is that????  Such a strange thing.  It's annoying.... that's for sure... but it's tolerable. Sometimes I have an issue with location, sometimes I don't.  I think it depends on what it is that is making the noise.. and where I am at and what is going on around me... I'm suffering from facial paralysis at the present time so it's definitely got the SSD beat!!!  However, come the first of the year, I think I'm going to venture out and look into a hearing aid.   See if it's something that would benefit me.. but I'm not in a hurry.  I'm going to give my body time to heal.....
Diagnosed 4/28/2016
2.4 x 2.0 x 1.9 cm AN
Symptoms:  Mild Hearing Loss, Mild Tinnitus, Mild Balance Problems, Possible Vision Issues, Some Vertigo.
Retromastoid Craniectomy 05/30/2016. UPMC Presby
Dr's Gardner and Hirsch
Left SSD. HB 6 Facial Paralysis.  Waiting for the nerves to wake up...

 


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