I have my approach -- just waiting for a date

[wendysig]

Hi all --
Dr. Choe just called to give me the results of the audiogram I had yesterday.  As I thought,, my hearing has gone down rather suddenly again.  I forgot what he said about pure tone, but my discrimination is doiwn to 24%,, so there is nothing left to save.  He is now recommending translab and I guess that's life, so I will be joining the ranks of those of you who are SSD.  While it certainly is not the end of the world, getting this news, even though I pretty much expected itl, has made me much sadder than I thought it would.  On the positive side, Dr. Choe pointed out that I am a good candidate for BAHA and I plan to pursue that when the time comes.  I asked if he could do the surgery for BAHA when he does the AN surgey,, but he said he prefers to stage it.  His feeling was that recuperating from the AN surgery was enough to handle at this time.  Hopefully, I will get the good news I expect from the opthamologist today.  That will make me feel at least a little bit better.

Wendy

[sgerrard]

Oh well. 

SSD is manageable, and translab is otherwise a good safe surgery. By all accounts, the BAHA implant is a simple procedure that can be done anytime.

Not great news, but at least now you know where you stand, and what lies ahead. Resolution is a good thing, even if it is plan B instead of plan A.

Hopefully the eye doctor will have something good to say.

Best wishes as you go forward,

Steve

[cmp]

Wendy,

While I wish your decision about approach didn't have to be connected to news of your hearing loss, I hope the sense of clarity and resolution on what lies ahead helps offset some of your sadness and anxiety about it. I think it's natural to be sad about a permanent change in yourself even if it doesn't come as a surprise. When I went to an audiologist to confirm my right-sided hearing deficit, I was shocked and saddened by the words "profound loss" even though it had already been that way for months and months. Somehow the medical test, official terminology, or whatever, always makes the reality sink in.

But SSD really isn't unmanageable, and if you are candidate for the BAHA, things should eventually return to normal (more or less  )

so, best of luck and hang in there!

Carrie

[lori67]

Wendy,

I'm glad to hear you have your plan in place, but sad to hear about your hearing.  I guess in some ways, at least you didn't have to struggle with the choice of approach.  I know that when I had my translab, the decision was pretty much made for me.  I'm sure it would have been hard to weigh the pros and cons of the different approaches.

As the others have said, SSD is definitely not the end of the world. It does take some getting used to, and I will say that I had an easier time accepting it once I allowed myself to admit I was sad and angry about it.  I spent so long telling myself that I shouldn't be sad about it because I still had one good ear and that was more than some people have, but I was sad and angry about losing a part of myself.  Once I admitted to myself that it was okay to feel that way, I was able to move on and now I just accept it as a part of the new me!  And it has definitely taught me to be a little more patient with people who may also have issues they are dealing with that I may not be able to see - like the SSD.  I hope my kids are learning that lesson through me as well.

I got my BAHA in January and am very happy with it, so it's good to know there are some options out there for you.  The BAHA surgery was not a big deal and I haven't had any problems with it.

Hang in there!  You will find a silver lining in this cloud!

Lori

[Jim Scott]

Hi, Wendy:

I join everyone here in regretting the decline of your hearing ability that has motivated you to choose Translab surgery.  However, it's probably a good choice under the circumstances.  Your sadness at the loss of your hearing in one ear is perfectly understandable and many of us have had a similar experience.  The BAHA can certainly help offset your hearing loss and is something to look forward to.  I've been SSD for some time (prior to my diagnosis and surgery) and I believe I cope quite well.  That's not to pretend that SSD isn't annoying at times, but it is surmountable.  Human beings are very adaptable. 

I wish you all the best as you move toward your surgery.  Try to remain as positive as possible and please stay connected here. 

Jim

[Debbi]

Sending you a big hug, Wendy.  It's a relief to have an approach, but you are entitled to feel sad, too.  I remember laying in bed one night talking to my dear hubby before surgery, and "sad" is exactly the word I used to describe how I felt about my impending hearing loss.  I kept trying to imagine how it was going to feel to wake up from surgery and be deaf in that ear (my hearing was still quite good - speech discrim. was 76%). 

But you know what?  It hasn't been bad at all!  As with many things, the uncertainty of the unkown was worse than the actual event - if that makes sense?

Give yourself time to feel sad, angry, etc - and then think about all the new friends you've made here! 

Did Dr. Choe give you any idea as to timing, Wendy? 

hugs to you!

Debbi

[leapyrtwins]

I'm glad to hear you have your plan in place, but sad to hear about your hearing. 

As the others have said, SSD is definitely not the end of the world. It does take some getting used to, and I will say that I had an easier time accepting it once I allowed myself to admit I was sad and angry about it.

Wendy -

I know this is kind of like "cheating" or definitely plagarism, but I'm quoting Lori here because she said exactly what I want to say at this moment.

While I wasn't able to be sad or angry about my hearing loss going into surgery (because the retrosigmoid approach gave me the chance of saving it), I did subsequently discovered that being SSD brought on these emotions.  I wasn't angry at my doctors though; I absolutely believe they did the right thing in my case and I would have made the same decision if they could have asked me.

IMO you have to grieve your hearing loss - like Debbi and Lori mentioned - give yourself time to feel sad and mad/angry.  It's only natural to feel this way.  You were born with two ears that could hear perfectly well, and now you will be "losing" one.  After you are done grieving, if you choose to, you can look into a BAHA or a TransEar.  Don't rush things; baby steps 

BTW, I think Dr. Choe is right about wanting to stage the BAHA surgery.  I make this comment with no facts to back me up - it's just my opinion based on my own experience.  Others who had the surgeries at the same time might tell you differently.

Jan

[wendysig]

Hi to all and thanks for your kind words and support.  Your advice sounds a lot like what I've been telling myself all day.  I do feel like I am grieving for something precious that I lost, which I did.  I just never realized before how precious it was.  Amazing what we take for granted.  The only  one I am mad at is myself, for taking too long to make a decision I should have made at least a month ago.  I might have had a chance to save my hearing then.  Well, this feeling too shall pass, hopefully soon.  I am not the kind of person to sit around feeling sorry for myself for very long.  On the bright side, I went to the opthamologist today and everything went as I expected. I still have high pressure in my eyes, so I am still at risk for glaucome, but that is the same as it has been for the past year.  I asked him about the visual problems I've been having (disorientation in crowds and things looking slightly different when I am walking) and he said the nerves in my eyes look perfect, so as has been suspected, it must be part  of my dysequalibrium problem.  That was the best news I could have gotten today and I was happy to get it.  It made everything else feel not quite so bad.

Wendy

[wendysig]

Debbi -
Nothing definite but we agreed on a tentative date of July 24.  It may seem like it is pretty far away, but since there is no no longer anything to save as far as hearing goes, it's soon enough.

Wendy

[Debbi]

Hi Wendy-

Well, July 24 is pretty quick, actually - you'll be surprised how quickly the time actually goes.

Hey, don't beat yourself up for "waiting too long" - very likely that a few months (or six or more) wouldn't make any significant difference.  The important thing is that you've found a doctor you are really comfortable with and have settled on an apporach.  You've done all the right things.  And, your attitude is great!

Call anytime, okay?

Debbi

[sgerrard]

Hi Wendy,

Given how fast your hearing declined over six weeks, I don't think there was much chance of saving it by any means, no matter how soon you had acted. Sometimes hearing preservation is just not in the cards.

I too have elevated eye pressure, and have had since a year before my AN diagnosis. I am also told that it has nothing to do with the AN. I have been using a drop to control the pressure; are you using anything?

It never ceases to amaze me how many different ways these ANs turn out. They start over here or over there; they grow this way or that way; they grow quickly or slowly; they show symptoms at a tiny size, or not at all until they are quite large. They're a lot like that famous box of chocolates.

I'm just glad they aren't a bigger problem than they are.

Steve

[wendysig]

Thanks Debbi -
I do work at having a good attitude because I know it is too easy to feel sorry for myself.   That is that last thing I want or need.  Hopefully, by tomorrow my sense of humor will return and I'll do something I can laugh at myself for again.  Either that or maybe someone will post something funny that will make me fall out of my chair again.  Actuallly, maybe I'll go back and look at Jan's post regarding her processor  I did practically fall out of my chairlaughing  when I read it last night.   In fact, thinking about it is already making me feel better.  I'll defininttely give it another read. 

Steve - Sorry to hear that you too are at risk for glaucoma.  I'm not using any drops, the pressure in my eyes is 19.  The doc says anything under 20 doesn't need anything but watching.  My next appointment is in six months.  You know, the doctors can say whatever they want, but the  fact that your eye pressure is elevated and mine is makes me wondrer if there are anyother ANers out there with the same problem.  To me at least, its within the realm of possibiility that they could be connected somehow.

Wendy

[lori67]

Wendy -

I'm sure Jan would gladly whack her head on something if she knew it would make you smile!  I would offer to do it, but somehow it seems much funnier when Jan does it.  At least it does to me!   

Lori

[leapyrtwins]

Geez, Lori.  Some thanks I get 

Here I am trying to be just like you - I even picked you as my mentor today and quoted you directly, not once but twice in the same post, and this is my reward?  A suggestion to whack myself in the head 

I can't even believe you'd behave this way!  Must be because Phyl's back on hiatus and not checking in on us 

Sadly, Wendy, Lori is probably correct.  As she's mentioned before I am a bit of an overachiever and I probably would take a whack to the head if I thought it would cheer you up. 

Don't beat yourself up thinking you've waiting too long to decide on the surgery.  As Steve said (okay I lied in my prior post, I do actually listen to him) "sometimes hearing preservation just isn't in the cards".  I am a perfect example of this.  I picked retrosigmoid to try to save my hearing and it just didn't pan out.  We don't always have a choice about things and despite being a certified control freak, even I have to admit that lots of times we just don't have any control either.

I'm glad you liked my BAHA play by play.  I've probably said it a million time before, but I am thrilled with my new "toy".

Now did I hear Steve say something about a box of chocolates?  Chocolate is my one true vice - outside of humor.  Is he going to share them?  I certainly hope so because if he doesn't Lori might just want me to whack him over the head 

Jan

[sgerrard]

Golly, Wendy, now I am feeling bug-eyed. My eye pressure got up as high as 30 at one point; with the drops, I can get it back down to 18 or 19. To me, 19 is low!

If anything connects them, I think it might be the case that both the AN and the high eye pressure share some common cause - a parent, so to speak. It might be something like a higher or lower than normal level of something in the blood: a hormone or an enzyme, some risk factor that increases the likelihood of both things occurring. Don't hold your breath waiting for a solid answer on that, but it will be interesting to see if there are others sharing this little boat.

Personally, I think Jan went out and got a miniature model of a BAHA, along with the real one, so she could scare us into thinking she has enormous hands.    I have no idea why she would want to scare us, though. Lori and I are as harmless as tiny little fleas. 

Steve