New SSD Questions

[nteeman]

After my 1/27/09 surgery I became SSD. I did have some hearing loss before surgery and I knew there waas a good chance of losing the hearing ability in that ear. Now I have been adjusting. At first I thought SSD is not so different than how I was prior to surgery as I did already have hearing loss in that ear. But now I find myself having more and more difficulties hearing and understanding people. Sometimes it is anoying, other thimes funny but I do find myself having difficulties at times.

I know I am very lucky as I did not have any facial paralysis, eye or balance problems but I've come to the cocnclusion that I have to make some kind of effort to adjust to
SSD--I just can't go on like nothing has changed.

I did try the BAHA demo at my ENT's office and was not impressed. I will be seeing an Audiologist this weekend about the TransEar aid.

Question: When I wake up in the morning I sometimes hear a series of clicking sounds in my AN ear -- it is like click-click-click-click, pause,click-click-click-click. Sometimes I think I hear a delayed swoosh sound in my deaf ear after hearing a loud sharp sound, such as a book dropping or a loud stomp. It is like the sound of the inpact followed by a short swoosh heard in my deaf ear. Very weird. 

Any thoughts?

[Mickey]

Hi Neal! To talk about tinnitus, I`ve had mine for about 30 years. Over the course of that time many new sounds have come and gone. Right now I`ve pretty much setteled into clicking w/ ring when I get up to purely ring during the couse of the day. I`ve done the Neuormonics which has been about 50% affective which is a big help. It takes time to get used to things. Over the course of my  time for the most part it`s just part of my "being" which I guess you can say I addapted to. Keep looking into whatever may help you. At the beginning being not used to things might make it a little more uncomfortable. As time goes by I do believe you will get whatever help you need and will adjust to everything else which will become normal to you. I`m glad to see your doing well, Mickey

[EJTampa]

Question: When I wake up in the morning I sometimes hear a series of clicking sounds in my AN ear -- it is like click-click-click-click, pause,click-click-click-click. Sometimes I think I hear a delayed swoosh sound in my deaf ear after hearing a loud sharp sound, such as a book dropping or a loud stomp. It is like the sound of the inpact followed by a short swoosh heard in my deaf ear. Very weird. 

Any thoughts?

Hi Neal,
 
I'm 2 weeks out of surgery and notice the clicking mostly in the morning upon waking up.  Do you still have some pressure?  I attribute mine more to continued changes inside due to surgery.  My clicking is just like "airplane" clicking, with changing pressures.
 
I have described the same echoing sounds in my update posts.  Any noise above and beyond what I would consider "normal" seems to "bounce" or "echo" to the deaf ear, but mainifests itself as a loud swoosh or other noise.  Not true hearing, but I get the same pattern.  Brains are really complex things.  I just attribute the noises to my brain making up the noises it thought it should have heard in the other ear .
 
Hope that helps.
 
Ernie

[nteeman]

Hi Neal! To talk about tinnitus, I`ve had mine for about 30 years. Over the course of that time many new sounds have come and gone. Right now I`ve pretty much setteled into clicking w/ ring when I get up to purely ring during the couse of the day. I`ve done the Neuormonics which has been about 50% affective which is a big help. It takes time to get used to things. Over the course of my  time for the most part it`s just part of my "being" which I guess you can say I addapted to. Keep looking into whatever may help you. At the beginning being not used to things might make it a little more uncomfortable. As time goes by I do believe you will get whatever help you need and will adjust to everything else which will become normal to you. I`m glad to see your doing well, Mickey

Mickey,
So the swoosh and clicking sounds I hear in my 'deaf' ear is part of tinnitus?  I do hear ringing sounds when there is a lot of background noise but as things quiet down it goes away. What is Neuromonics?

Thanks,
Neal

[jazzfunkanne]

Hi Mickey, there is also the option of the cros aid which requires you too wear two aids, also about the baha i took it home for the weekend and it is really good, the headband doesnt really do it justice as its tight on your head, she gave me a device that you put between your front teeth and bite on it the baha clicks onto it , its amazing the sound quality, and she said it is even better once its on your conduction bone, i havent tried the transear yet so i cant comment on that.

[Esperanza]

Hi,   I have all those sounds and more at varying times... no set pattern or times though.  It gets worse when I get dehydrated although
coffee doesn't affect it (as long as I drink enough h20 throughout the day!).  

It's been 14 months for me and I do find the SSD VERY frustrating although I cope very well generally so do not share the fact...
I have been spending some time in theatre (surgical!) but it has been a nightmare at times  - not from the tinnitus but just not quite being able to hear all that's being said when machines are going and masks are on.  It has made me feel quite at a disadvantage.  Fortunately I am just observing - would obviously not be able to work in that kind of environment -  and have only been asked to do one thing and the surgeon was foreign and again masked up but fortunately the scrub nurse couldn't understand him either to begin with lol (unless she is SSD to!!)  I think I give myself a hard time.  

Sometimes I have to ask people that do know I am SSD if they can hear something I am struggling with and most often they can't hear whatever it is too well either.  I am reminded there are worse things to have pretty regularly: the ward I am on at the moment gave a diagnosis of ovarian ca in the last couple of days which they believe has spread to other organs and the poor lady was obviously devastated...  

... doing my best to keep things in proportion but yes, frustration is my biggest problem -  really miss my hearing at times and wish the tinnitus would take a hike!

[mimoore]

I live in Canada and sadly we do not have the Transear... still waiting and hoping it will be here soon.
I am very interested to see what you think.
Michelle 

[Mickey]

Hi Neal! Yes, all kinds of sounds can be considered tinitus. My mother has also had it for as long as she can remember. There is something called American tinnitus association. I did look them up a couple of years ago and went to a meeting with my mom on Long Island. Very many people do have it other than people with AN. It`s my only symptom other than a little hearing loss high pitched. Neouromonic was an expensive treatment which subdued the intensity of my sounds. They do have some audiologists out on Long Island who deal with it. I really don`t have their names but just invesigate a little. I f you need mine shes in NYU medical center, Theresa Shaw. Mickey

[leapyrtwins]

I did try the BAHA demo at my ENT's office and was not impressed.

Seriously, Neal?   While I would never "push" a BAHA implant on anyone, I have never heard this comment from anyone who has tried the demo; actually I'm pretty shocked 

I'm also curious.  What didn't impress you? 

I personally was blown away by the demo and it solidified my decision to have the implant.  I consider the BAHA one of the best things I ever did.

Give us some feedback, please.

Jan

[nteeman]

I did try the BAHA demo at my ENT's office and was not impressed.

Seriously, Neal?   While I would never "push" a BAHA implant on anyone, I have never heard this comment from anyone who has tried the demo; actually I'm pretty shocked 

I'm also curious.  What didn't impress you? 

I personally was blown away by the demo and it solidified my decision to have the implant.  I consider the BAHA one of the best things I ever did.

Give us some feedback, please.

Jan

Jan,

I found the benefit to be minimal -- certainly not enough to convince me to go through another surgery and get the implant. I definitely was not blown away. It was 3 weeks after my surgery and I would try it again if the idea of the implant was not so unappealing to me. I fear a similar result with the TransEar. Unfortunately they do not offer a demo, But here in NY you have 45 days to evaluate a hearing aid and return it if not satisfied.  I might just be one of those who have to learn to live with SSD without anything for now.

Neal

[Vivian B.]

Hi Esperanza,

I too have had hearing loss for sometime and it is getting worse. It is frustrating. I even hear my own voice through my an ear when I am speaking and find that I speak loud. I am also watch and wait. My an is 8mm. The surgeon told me that with surgery I will lose all my hearing immediately. The stats for radiation show that maybe if there is some hearing left, it may be preserved but lost overtime. I am concerned with more than that right now. I understand how you feel. It is annoying. Specially when you are at work and have to deal with people and the phone.  Do you have ear blocking. I have been getting that, feels like my right side is under water.

Vivian

[sgerrard]

Hi Vivian,

Progressive hearing loss is what got me into treatment rather than waiting on my 8mm AN. I remember a discussion with Tumbleweed, where we were saying that if you could preserve your eyesight for another 5 years, would you do it, or would you say that's not long enough, might as well be blind now? We both concluded that saving some hearing for a while was worth the effort, even if it is not forever. I am wearing a hearing aid in my AN ear, and am happy to have some useful hearing on that side. It will probably fade, even my right ear is fading gradually, but it seems like it will be useful for some time yet.

I really don't mind the tinnitus, it is the darn crickets everywhere that bug me.

Steve

[leapyrtwins]

Thanks for the feedback, Neal.

The BAHA is definitely not for everyone.  The TransEar isn't either.  It's just like your treatment decision - very personal choice.

I'm not sure, but you may have tried the BAHA demo too soon post op.  My doc insisted that I wait for my head to "heal" from my AN surgery and while healing is different for everyone I generally think it takes at least a few months.  Then again whether your head had healed or not may be irrelevant.

Good luck with the TransEar - lots of forumites like theirs.

If you find you don't, there is still the possibility you'll adapt just fine to being SSD.  Lots do.

Please keep us posted.

Jan

[Esperanza]

I wonder if the experience of treansear/baha differs depending on the bone density of the skull?  I haven't had a trial of either so
I don't know but I  figure my skull is pretty dense! so I am hoping the transear will suit or maybe it's better if it's not so dense? Anyone know?

Vivian, I have no hearing at all in my AN ear - completely gone and suddenly unfortunately - catastrophic loss they called it and I agree - I know if I had the chance at saving any of my hearing I would go for it without hesitation especially knowing what I know now.

[nteeman]

Thanks for all the replies.   I got fitted for the new TransEar 380-HF today.  I will post once I get it and report my review.

Neal