one week post retrosigmoid -- new to SSD: advice needed, please

[JaneMD]

Last Tuesday, my husband had retrosigmoid with Friedman and Gionnatta at Keck.  They were lovely and did the best they could to remove my husband's 1.6 cm tumor and leave the facial nerve and hearing nerve intact, but although the ABR showed function throughout the surgery, one week later, he has no functional hearing in his right ear.  Although we knew the risks, we are both devastated.  We hoped to beat the odds.  We wanted to come back here and share a full success story.

In good news, they got the entire tumor, and although it was tangled in the facial nerve, his facial nerve is perfect, his pain is manageable with motrin, and he is almost back to full balance function already.  He's walking several miles a day and eating as usual.  The scar looks great, and the swelling is going down, albeit slowly.  I know that this is all excellent news.  But still: as you are all aware, to wake up with SSD when you had full hearing the night before is jarring and terrifying.  We are hoping that others can tell us how this plays out.

These are some questions we have.  We would really appreciate all the advice, words of encouragement, and suggestions you have.

1.  How long did it take folks before the feeling of fullness goes away, if ever?  H says that it feels like someone stuffed cotton in his head. 

2.  H is reporting that people's voices sound just a smidge higher:  like everyone is sucking a tiny bit of helium.  Did others experience that?  When does that change, if ever? 

3.  We were advised to wait 6 months before looking for hearing aids. Did others wait that long?  Why? 

4.  H hears popping and tones (but no voice recognition at all) from his AN side.  Do those fade? 

5.  We recently moved to the DC area, and did not have a "primary care" doc for the AN, as we scheduled the surgery pretty recently after moving.  What kind of doc should manage H's after care?  He needs to get set up with whomever will help with hearing aids, etc., when it's time.  Suggestions?

6.  H aspires to be one of those folks who says that SSD has simply become a fact of life, and one that he doesn't really notice any more.  Does anyone have any suggestions or advice for how to get to that point?  Because this?  This part is so, so hard. 

Thanks in advance for any and all replies. 

[arizonajack]

If I avoid any of the questions it means I don't have an answer.

"We were advised to wait 6 months before looking for hearing aids. Did others wait that long?  Why?"

I'm sure it varies. I got mine within 3 months of SSD but that was even before I was diagnosed with AN. Some have reported fluctuation in hearing loss. It's rare to come back from SSD but give it a couple of months. If his good ear is still 100 % then there really isn't any hurry.

"H hears popping and tones (but no voice recognition at all) from his AN side.  Do those fade?"

Again, that varies, too. I've had tinnitus (strange varieties) since the onset of my symptoms but the tinnitus in my AN ear is barely noticeable any more, sometimes very faint tones, sometimes nothing.

"We recently moved to the DC area, and did not have a "primary care" doc for the AN, as we scheduled the surgery pretty recently after moving.  What kind of doc should manage H's after care?  He needs to get set up with whomever will help with hearing aids, etc., when it's time.  Suggestions?"

The ANA website has a list of physicians and facilities that you can choose from.

https://www.anausa.org/resources/medical-resources

"H aspires to be one of those folks who says that SSD has simply become a fact of life, and one that he doesn't really notice any more.  Does anyone have any suggestions or advice for how to get to that point?  Because this?  This part is so, so hard."

Human nature is such that I don't think anybody ever gets 100% to that point. I've been SSD for 3 1/2 years. As much as I have accepted it as a "fact of life" sometimes I get annoyed and sometimes I get sad. Not often. My acceptance is close to 100% but not quite there. 

[Troutbc]

So sorry to hear about your husband! I am 27 and had surgery to remove a 3cm AN in April. I, too, had perfect hearing and it was monitored throughout surgery. However eventually it was lost during surgery, so for me when I woke up, I expected it. It's a little different to come out of surgery with hearing, and then wake up one morning later on and not have it. That must have been so scary! Before my surgery I was frightened as to what SSD would be like. Turns out, it's not all that bad

I think the best thing for you and your husband to do is just own it. This is his new life, and to be honest, I have gotten so used to it that I don't even remember what it's like to hear with both ears. I started feeling this way about 3-4 months after surgery. It DEFINITELY takes adjusting. Yes, people's voices sound funny. Yes,  he will get weird sounds (popping, static, hissing) in the deaf ear as well as the good ear as the brain tries to adjust. I have a constant "static" in the deaf ear that does become annoying on some days, but not all days. Sometimes my good ear buzzes. You truly do get used to it- and I have found it has gotten better in time, I'd say give it 3-4 months.  You should try your best to just, as I say, "own it" and continue with your lives. I have yet to get a hearing aid because I don't think I need it. I position myself such that I can hear almost everything.  However I also heard (no pun intended) to wait 6 months. I think this has to do with your brain adjusting to one-sided hearing.

Some things he may experience: 1)hyperacusis- sounds will seem louder and startling (dishes clanking, phones ringing, yelling, etc). I always carry foam ear plugs, and sometimes I even sleep with them. Total peace and quiet is something SSD folks NEED. He may notice his ear gets "tired" sometimes, so ear plugs are good for this. 2)emotions - there are still days when I realize what happened, i lost hearing in one ear, and get sad. I shrug it off as quickly as possible and do something to distract myself from those thoughts. 3)annoying people - people who know may constantly ask if you can hear, etc. it gets really frustrating. SSD people can hear fine, and will position themselves to make sure.

In the grand scheme of things, if you are going to lose anything, hearing in one ear is a total blessing. Your body does not NEED 2 ears. They don't work in tandem. He will just only hear from one side- he will be amazed how he gets used to it. In fact, my friends and I have made a joke of it...."we hate that ear and that tumor! we don't need it or want it!" You really just need to try and accept that these tumors majority of the time take your hearing. There are MUCH worse things. I think all ANers can agree they'd rather lose an ear than have facial palsy. Your husband is lucky!!! And just remember, this is brain surgery. This is a major major life event. To come out of it with only the loss of something you don't really need is a true blessing.

[JaneMD]

Thanks for the replies, Troutbc and Arizonajack.  They were definitely helpful to hear.  He's in the process of trying to own it, and is looking forward to being able to position himself to hear what he needs/wants to hear.  Finding the new normal is a process, and I don't think we were prepared for how shockingly different it is from the hearing he had before surgery.  But, it's not going to change, so he's trying to adjust as fast and completely as possible. 

He knows he's very lucky not to have experienced many of the potential other side effects of the tumor or the surgery.  For that, we are both eternally grateful. 

[v357139]

Jane,
Perhaps this might help.  I lost hearing gradually, so I guess I got used to it without realizing it.  I really do barely miss it now, really.  My advice is to focus on other things.  Tell him to focus on what he can control - Get lots of sleep, eat well, walk a lot but don't overdue, get more sleep.  One day he will wake up and he will have acclimated.  I don't think he can MAKE himself get used to it.  But I think he can LET himself get used to it, if you get me.  Give it time.  After a time, he'll know if a hearing device is right for him or not.
Rich

[alabamajane]

Jane,,
I agree with Rich,, it is hard to adjust at first but I believe he will make the transition to SSD in his own way  with some time. Basically you learn to sit in the right spot in order for your good ear to hear. He will miss the hearing he had lost and there really is no way to get it back. I had excellent hearing on AN side before translab surgery in 2011,, I knew I would lose it and it was very awkward at first
. But I have adjusted. I did get a BAHA implant last Dec. but have never been really happy with results. I can hear more true enough but conversation is not much better, especially in a situation with more than one person,, and there is no more directionality than SSD. I can't tell where someone is calling me from if I can't see them.

Good luck to him and just hang in there!!! Life does get better and go on.
Take care of yourself also!! It's hard on caretakers as well,,

Jane
( love your name!   . )