Author Topic: Hearing loss  (Read 5795 times)

katmac36

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Hearing loss
« on: August 09, 2011, 11:03:44 am »
Hi everyone! My surgery date is fast approaching. I have translab with Dr. Luxford on September 8th. When I first decided on translab the idea of hearing loss did not bother me. In the grand scheme of things this seemed so inconsequential. There were so many other things to consider. Now, it is starting to bother me. It hit home this past week when I was visiting my brother in Wisconsin. I was sharing a room with my older niece (who is 33) and my 5 year old son. In the middle of the night my son woke up crying. I woke up to my niece sitting and rocking him. I hadn't heard a thing!! I was sleeping with my good ear in the pillow. I felt terrible. Now I am starting to realize that this is bigger than I actually thought. I know my hearing is already bad in that ear, but at least I can hear some things. In a few weeks it will all be gone. Just wondering how the hearing loss affected you all and how you dealt with it. I am a nurse and worry about my ability to do my job, as well. How did it affect your daily life? Thanks for the help!!

Cheryl R

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Re: Hearing loss
« Reply #1 on: August 09, 2011, 12:55:18 pm »
Hello and I would say for me the sleeping and not hearing is the worse but since I am retired,mostly does not affect me alot.             My husband is around usually to make sure I am awake.    If you need an alarm then there are kinds available that put a pad under your pillow to shake it.         Hearing children at night may take learning some ways to adjust.      I don't sleep as well when the grandkids stay all night.               Other moms will answer this.         I have not looked but there may be a monitor with a strobe light when a child cries in a room.   
I can answer the nurse part as am now retired but worked past more than one AN surgery as a nurse.  I have NF2 so have had 3 tumors.    I was on med surg in a smaller but busy rural hospital.      Locating sound was hard at times when an IV beeped.    I was back to work 2 mos post op.     I had my own stethoscope and was not an amplified one and did ok.        I read you worked nights and walking in a dark area will be an issue with balance.         Other nurses usually are good help with what adjustments may be needed for your own work situitation.   
locating sound and being in noisy situitations are the hardest.    Have you thought of getting a BAHA which would be of help.     Some drs will put in the rod at same time as the AN surgery.   Others don't.                                Good luck with your surgery and wish you well!          Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Jim Scott

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Re: Hearing loss
« Reply #2 on: August 09, 2011, 02:58:43 pm »
Hi, Katie ~

The loss of unilateral hearing is certainly a cause for concern, especially with young children to care for and working in a demanding profession. 

Cheryl offered some helpful suggestions, especially regarding your work situation and how diminished hearing may affect your ability to do your job.  Like her, I don't have small children so I can't respond to that issue with any authority.  However, I've lived as a SSD (Single Side Deaf) person for close to a decade, as my hearing in one ear slowly but surely disappeared as my (undetected) AN grew over an approximately 5-year period.  I'm now five years post-op & radiation.  For what its worth: I do quite well being SSD but to be honest, I do 'miss' things.  I've learned to lean in and turn my hearing ear toward the speaker and this works well about 80% of the time.  Occasionally, I simply can't understand a person because, even close-up, they speak too fast, too softly or simply do not enunciate clearly.  Sometimes, all three.   To watch TV, I use small, light wireless earphones designed for the hard-of-hearing.  They are 'connected' (no wires) to the TV (via a radio signal) and that way I can keep 'my' volume as high as necessary while my wife can keep the actual TV volume at a more comfortable decibel level.  I'm retired so I can't offer any personal information on how being SSD might affect a work situation.  However, I'm a Deacon in my church and attend regular meetings with 5 other deacons and usually can hear everything, although 'positioning' can be critical, e.g. making sure everyone is on my hearing side or being able to subtly turn my hearing ear toward the speaker of the moment.  Movies are always plenty loud enough to not give me any trouble hearing the soundtrack.  Most public events are 'miked' (amplified) so they don't usually pose a hearing problem for me.  In a situation where there is a stage and a speaker and he/she isn't using a microphone, I always attempt to sit as close to the stage/lectern/speaker as possible and that is usually good enough to hear everything.  I use a clock-radio as my alarm (set a relatively normal volume) and I always hear it, even with my hearing ear on the pillow.  It's just muffled - but still audible.  Hearing conversations in a crowded, noisy restaurant is a challenge.  I often can't really hear them very well.  When it's just my wife and myself, she always sits on my 'hearing side' and that is sufficient for me to be able to hear and converse with her.  Sometimes,especially in a crowd with many people talking at once,  I do 'miss' a humorous comment someone says and find myself laughing along with others to hide the fact that I don't know what we're laughing about or just nodding my head and mumbling '"ummm" to a statement I was unable to hear.  This doesn't happen a lot but, to be candid, it does happen.  You asked how the hearing loss affected our daily lives.  This is a synopsis of my experience.  I trust it might be helpful to you.

What all this information points to is that one can adjust to being SSD and with a few admitted deficits, I've managed to do that.  However, my hearing loss was very gradual (5 years) and that made it easier, giving me plenty of time to adjust.   In addition, my hearing in my 'good' ear is still excellent and that is a big help.  For those - and you may well be one of them - who cannot function well with 50% diminished hearing, there is the BAHA (Bone Anchored Hearing Aid) option.  These are usually quite effective and most BAHA users are delighted with theirs.  I don't feel the need for a BAHA - but that could change someday.  A BAHA is my 'Plan B'.  On consideration, a BAHA may be your Plan A.     
« Last Edit: August 12, 2011, 01:59:17 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Hearing loss
« Reply #3 on: August 11, 2011, 06:45:35 am »
I dealt with my hearing loss with a BAHA.

Best thing I ever did post op.

Once your head has healed, ask your doc about trying a demo.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Syl

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Re: Hearing loss
« Reply #4 on: August 11, 2011, 08:27:25 am »
Katie:

I had 60% word recognition before my surgery. I wanted to save my hearing. After surgery I lost more of it. Now it's at 20%. To tell you the truth, I don't know that I could tell the difference between 20% and 60%. Directionality is gone. My hearing aid does help with directionality, but not with conversations. I have too much hearing for a BAHA, but not enough for conversations. I'd love to be able to get a BAHA, but can't. 

It was hard at first sleeping with my good ear on the pillow & not being able to hear the crickets at night. Or thinking that I should sleep with my good ear up in case something happens at night that I need to hear. It took some adjusting for me, but I've gotten used to it.

Now, I can nap better during the day with noises outside because I just put my good ear on the pillow & don't hear most of it.

You don't say how much hearing you do have. I didn't like it when Drs told me that I didn't have useful hearing so a Translab would be my best option. I felt I could still hear from that ear so I opted to save my hearing. It took a while to understand why they refered to it as no longer useful. The AN ear doesn't do anything for me that the good ear can't do on its own. 

So if your hearing is less than useful, don't worry about having translab. You can get a BAHA later.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

murdockthefirst

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Re: Hearing loss
« Reply #5 on: August 12, 2011, 12:55:34 am »
I am going to be straight up with you!I did not have the oppurtunity as you to schedule my surgery!(Read my posts)My hearing was already shot prior to surgery!I contacted MRSA in a hospital a few years before my  A.N.discovery...I was told by my Drs. then....that the staff infection and/or the Vicomyison used to treat it caused my hearing loss!... I beleive now it was the golf ball sized A.N. I had removed this past April!..misdiagnosis by a few different drs. I feel is why it is the way I am!.. No matter now! The loss of hearing in my right ear really sucks!I have tried to deal with it for over 5 years! If I sleep with my head on the pillow on  my left side I do not hear anything!When I walk down the street I had to learn to make sure to always be aware... because what seems to be coming  from my left hearing could also be coming from my right!...In  other words more caution is advised!..Or when I am on the bus(I am not able to drive any longer because of all that has transpired with me)Someone behind me to the right may be speaking to me and I can't hear a thing!..I am soooooooooo frustrated you have no idea!..I'm always tired!..Depressed...irritable...dizzy..unfocused...Just being real!....I'm a newbee who has given up!Meaning no more Drs. advice!...I do not want to be pacified nor  felt sorry for....As I feel I have been by some on this site!.. I'm going through hell and am not dealing with it....O.K?..Any of it!..Straight up!...God bless you all!  !It is what it is!
Jeff Murdock

CHD63

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Re: Hearing loss
« Reply #6 on: August 12, 2011, 06:24:56 am »
I, too, am SSD and I, too, have a bone-anchored hearing device (mine is an Oticon Medical Ponto Pro).  The Ponto is great during my waking hours but when I take it off to sleep at night, I am back to SSD.  I do not have small children, but when our grandchildren (ages 2, 4, and 6) are there, I do worry that I will not hear them.  The older two know I cannot hear them in the night, so they know to come touch me if they need me in the night.

My suggestion would be to talk with your five year old and be truthful with him that "Mommy cannot hear you sometimes and you will need to touch my arm to let me know you need something."  Yes, it does not seem fair to you, but five year olds are very resilient and can accept new responsibilities quite easily if you are calm when you explain it.

Actually, very loud noises will carry through pillows to your "good" ear if it is the one down at the time.

Best thoughts and many prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

MGengo

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Re: Hearing loss
« Reply #7 on: August 12, 2011, 07:30:43 am »
I'm also SSD.  My children are grown, so that's not an issue.  If I am sleeping on my good ear and don't hear the alarm clock my back-up is my husbands elbow poking me in the back.  :)

As far as work is concerned, I found I had to be honest with my co-workers and colleagues.  If I can't hear them, I have to tell them and not try to guess what was said.  In meeting/conference rooms I try to arrive early enough to position myself on an end where I don't have to worry about not hearing the person seated on my deaf side.

But the best advise I can give, is to keep a sense of humor about your situation.  There are worse things than being SSD.

Anasazi42

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Re: Hearing loss
« Reply #8 on: August 12, 2011, 10:20:50 pm »
Do not give up! Don't. You. Are. Not. Alone. No one who has gone thru AN surgery and faced all the post-op misery feels sorry for you as if there's no true understanding. Please please call someone on the willing-to-talk list. I had to learn to walk again after my AN removal. My physical therapist really helped me with not only my balance issues but also listened when I was at my wit's end and wanted to give up. Depression is part of the journey. Talk to someone, but please don't give up. Keep on venting here and we'll just listen or we'll try to offer advice if you need it. But know that none of us wanted to be here. We weren't given a choice. But we are a source of support.

I am going to be straight up with you!I did not have the oppurtunity as you to schedule my surgery!(Read my posts)My hearing was already shot prior to surgery!I contacted MRSA in a hospital a few years before my  A.N.discovery...I was told by my Drs. then....that the staff infection and/or the Vicomyison used to treat it caused my hearing loss!... I beleive now it was the golf ball sized A.N. I had removed this past April!..misdiagnosis by a few different drs. I feel is why it is the way I am!.. No matter now! The loss of hearing in my right ear really sucks!I have tried to deal with it for over 5 years! If I sleep with my head on the pillow on  my left side I do not hear anything!When I walk down the street I had to learn to make sure to always be aware... because what seems to be coming  from my left hearing could also be coming from my right!...In  other words more caution is advised!..Or when I am on the bus(I am not able to drive any longer because of all that has transpired with me)Someone behind me to the right may be speaking to me and I can't hear a thing!..I am soooooooooo frustrated you have no idea!..I'm always tired!..Depressed...irritable...dizzy..unfocused...Just being real!....I'm a newbee who has given up!Meaning no more Drs. advice!...I do not want to be pacified nor  felt sorry for....As I feel I have been by some on this site!.. I'm going through hell and am not dealing with it....O.K?..Any of it!..Straight up!...God bless you all!  !It is what it is!
Diag. Dr. Saffran ENT 3-9-11; 45 yrs at time of diag. 3.5+ cm AN rt side; 9 hr retrosigmoid craniectomy 5-12-11 FL Hosp. South, Neurosurgeon Dr. Melvin Field; Gold wt implant
Post-op: facial para. (rt), double vision (cleared up), SSD, tinnitus, balance issues, ataxia, movement disorder

leapyrtwins

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Re: Hearing loss
« Reply #9 on: August 14, 2011, 09:19:06 am »
Murdock -

you should see if you are a candidate for a BAHA implant.

I experienced depression and a lot of the frustration you mention in your post when I became SSD from my AN surgery.

A BAHA won't give you normal hearing again, and it's not perfect, but it will help solve a lot of the problems you mention - specifically not being able to hear someone on your "bad" side.

Check out www.cochlearamericas.com for more info on the BAHA - or just ask those of us here on the Forum.

Good luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

murdockthefirst

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Re: Hearing loss
« Reply #10 on: August 15, 2011, 03:20:29 am »
Going crazy!
Jeff Murdock

Brewers7

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Re: Hearing loss
« Reply #11 on: August 15, 2011, 12:27:52 pm »
Jeff,
     I have been on the MRSA train and I am now SSD, so I certainly understand your situation.  I got a Transear in December.  My hearing tested at 85% with the Transear.  So it is not as good as regular hearing but much better than SSD.  Because of the MRSA problems, the ENT did not want to do the surgery for BAHA.  God BLess You today.
Susan
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

jdunavan

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Re: Hearing loss
« Reply #12 on: August 16, 2011, 06:08:26 pm »
I had surgery the end of April.  I have total lose of hearing in my right ear.  It's an adjustment for sure, not just for you, but for everyone around you too.  My family has been great.  My kids actually think it's funny to come up and whisper in my ear to see if I can hear them, which of course I can't.  There are times that it is frustrating, but for the most part, my adjustments have been fairly easy.  One of the hard things is finding the cordless phone when it's not on the base, can't tell where the ringing is coming from, but I just laugh at myself and pick up the corded phone.  Being in big rooms with lots of noise makes it very hard to focus on specific voices, but my family has been great to be kind of buffers.  Losing hearing was certainly not something  I wanted, but I don't think it keeps me from having a normal life.  The key is a good sense of humor, and also don't be afraid to just tell people to speak up.   One thing I will say about the situation with sleeping on your good ear......there have been several days that I have woken up to find my alarm clock has been going off for a minute or two.  But I do still wake up, it takes a little longer, but your other hear will hear it, just not as loudly, so it kind of wakes you up slower.  I am confident that if your cousin had not been in the room with you, after a minute of two, you would have heard your child crying and been able to comfort him. 
Hope this gives you some encouragement!
Joanne
1.4 cm in right ear

tracey

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Re: Hearing loss
« Reply #13 on: August 22, 2011, 12:59:07 pm »
I had surgery on the right side 16 months ago and even though I  sleep on my hearing side I still remain the only person in the house that hears the dog barking when she wants to go out! I think you become tuned in to noises that are important so don't fret too much. I also have cros aids, which I don't wear all the time, but are very useful in the car for when you have the window down on the good side and still want to hear whoever is sitting next to you.
« Last Edit: August 24, 2011, 02:46:14 pm by tracey »

sarahinPA

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Re: Hearing loss
« Reply #14 on: August 22, 2011, 03:53:29 pm »
Katie,

Becoming SSD was a big issue for me as well, my hearing was pretty good before surgery. I'm 3 weeks out of surgery and although this has been an adjustment, I hardly notice it in day to day life! Yes, I turn the tv up a bit more and maybe I say "what" and "huh" more now, but IRS not too bad of an afjustment. My tinnitus did get a little worse, it's manageable but annoying. I noticed it today when I went to the museum with my sister, she has a low voice and i felt bad buy she had to repeat herself like 100 times!   I went to dinner this weekend and things were ok but the restaurant was really loud and that just made the tinnitus worse.

Good luck, I know this is hard but you will adjust and be ok!

Ps. Are you seeing dr Lundsford at upmc? If so, I also see doctors in that office and they are great!!!
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.