Update

[LADavid]

I've been absent awhile.  It's been a rugged past two months and I haven't been real positive or sociable.  Not much that I could contribute.  First, from a hearing test, I learned that what is left of my hearing is deteriorating -- looking more and more like an ASL future.  Then I got my third round of Botox.  In spite of what Lainie told me today, I haven't felt any improvement.  But the worst was my balance.  Over the past two months it has become far worse than immediate post-surgery a year and a half ago -- to the point I fell over while getting off a bus.  Embarrassing enough in itself.  More embarrassing that it took several people to help me to my feet. This led to consultations with my doctor and PT.  Which led to an ENG Caloric test (a very ugly experience that makes an MRI look like child's play.  Think ice pick jammed in the ear. If you face one, run away - er I mean stagger away).  My balance and I failed it miserably.  (I told everyone -- but they didn't believe me).  All this led into a balance research study program that starts Monday with an intensive three-day training progam.  Looks like I'm going to be a wonky-head lab rat.  Hopefully it resolves some of the issues like not being able to drive because the road is doing backflips.  I'll keep all you wonky-head staggerers and weavers posted in the Balance Issues section.  My best.  David

[sgerrard]

I am happy to hear from you, David, but not happy to hear the news.

My non-AN side hearing is not 100% either, and I wonder about where that leads in the long run, but I think you are starting to find out now. I am curious about the balance: do the tests show weakness on both sides, or only the AN side? And if it is both sides, what is the explanation for losing balance on the other side?

Anyway, it is good to hear from you, and I hope you will come around the forum from time to time, even if you don't feel positive or social. We are here to support you as well, not just lean on you. Keri has stepped in as our weekly update reporter and is holding down the fort fine. We do miss you, though.

I hope the research study program proves to be helpful, and that you get some answers and some results. Best wishes to you.

Steve

[CHD63]

David .....

It was good to see your posts again ...... but so sorry you are having such troubling balance issues!

Although I am not NF2, I have no vestibular nerve function on either side (one from AN surgery, one from previous retrosigmoid surgery) so I can identify greatly with many of the symptoms you are describing ..... and it is frustrating, to say the least.

So glad you are getting involved with the balance research study program.  I had 10 months of intensive vestibular therapy and it really did help me develop my visual and neuro-muscular aspects.  I probably will have to do maintenance exercises the rest of my life to keep those two things strong to compensate for the missing vestibular functions.

The ENG Caloric test is awful isn't it???  Hope I do not have to have any more of those!!!

Keep posting to let us know how you are doing.

Clarice

[Lilan]

David, sorry to hear about your troubles. I agree, that test is not so pleasant. Especially when they have to resort to the ice water step, as they did with me on my non-responding side! 

I really hope and trust that you will get some help with your balance. That is one thing that really does seem possible to improve through exercises or whatnot, so I hope very much that will be the case for you. And soon, so you can enjoy bustling around your lovely town again before long! 

[Cheryl R]

David, I am sorry to hear about the increased hearing loss and all of your issues which aren't supposed to happen post surgery.            Do you have an intact acoustic nerve on that side where you would be a candidiate for the cochlear implant?          Have you lost enough hearing yet to need a captioned phone?         They are such a big help.              I know what losing the hearing feels like and I just hope every day I don't again but I have no guaranteees for the future.            I have it back for now and I just hope no more tumors.                           Are you on an anti depressant as you need all the emotional help you can get to keep going!                               We miss hearing from you and hate to hear of your increasing problems.
           I wish you well even though I am sure it doesn't feel that way to you,                         Cheryl R  

[leapyrtwins]

David -

like everyone else here, I'm happy to hear from you, but not happy to hear what you have to report.

Have the doctors @ House had any experience with what you are facing?  They do so many surgeries, I would think that perhaps they have had other patients who have encountered things like this.  Can any of them offer solutions?

I wish there was something I could say to make things better or something I could suggest to solve the problem.

Just know that we are thinking about you and are here to support you in any way we can.

We miss you.

Jan

[msmaggie]

Well, rats and toadstools!  I was worried about you during your absence from the forum, and am really sad to hear about your difficulties.   If wishing could make it so, I would send many of them your way to make things better for you.  Keep us in the loop when you feel like writing.  We do care so much!

Priscilla

[Keri]

Oh David,
I feel so bad reading about your hearing and balance issues. I do also hope there is hope for something for your hearing. And I hope the balance tests they are doing can bring some type of treatment / therapy that will really help you improve as well.
We do all miss you doing the weekly update and understand why you need a break. I'm glad you're still in touch because so many people here care about you and want to know what you're going through so we can try to support you.
Please update us more when you can.
You're in my thoughts and prayers,
Keri

[Kaybo]

David~
As I told you on FaceBook, I wish and pray that you will get some solutions after this intensive therapy...I know that you will keep us posted!

K

[Jim Scott]

Hi, David ~

Thanks so much for checking in and updating us.  I know its repetitive at this point - but you've been sorely missed.  Now we know why and of course, we can easily understand the reasons for your absence.  The hearing and imbalance problems you're dealing with are daunting.  That ENG Caloric test must have been very trying, at best, and not a mood-enhancer by any means.  I certainly hope the balance training program is beneficial for you and that these issues you're struggling with can be either resolved or at least minimized to some extent, making life easier and subsequently, making you a bit more sanguine.

Jim

[wcrimi]

David,

I'm very sorry to her about your troubles, but I hope you will try to keep us updated in this thread. There are probably a few things we can  learn from your experiences.  Hopefully, the doctors will find a way to get you back up to speed.

To all,

I find deterriorating balance and hearing issues once the AN has been removed and some recovery has taken place to be a bit perplexing. I wonder if sometimes these things are unrelated to AN surgery, but because of our experience, we simply assume they are AN related.

For example.

I have a 50 year old friend that is experiencing some significant hearing loss right now. She was testing so much like she had an AN, they sent her for an MRI to check for that. Fortunately for her, the MRI was clear, but that doesn't explain the hearing loss.    

Suppose that was one of us, the assumption would immediately be that he it HAD TO BE "AN" RELATED even though it's not.

Recently I was showing my mother some of the balance exercises I do for therapy. She was worse at a few of them I am. She's in good shape and gets around great even though she's in her 70s! 

Another friend of mine recently had a bout with vertigo and was in bed for quite awhile.

You have to ask yourself the same questions.

Why? 

Suppose that was one of us, wouldn't we just naturally assume it was the AN surgery, treatment etc.... 

I'm not trying to minimze anyone's troubles. I hope it doesn't come out that way. I'm just trying to point out that if 100 people have AN surgery, there's probably going to 1 or 2 that are going to lose more hearing, have vertigo or balance issues etc...that have absolutely nothing to do with prior AN surgery or treatment.  So the risks may not be as high as they seem and it may also be possible to treat these things better than if it was AN surgery related.

Hopefully, that's the case with David's balance. 



 

[saralynn143]

Hi David, I just got back from a few days on vacation and while I am glad to see you back, I am sorry to hear about your setbacks.

Here's hoping that the training program, which is now underway, is of great help to you.

Sara

[suboo73]

Well, rats and toadstools!  I was worried about you during your absence from the forum, and am really sad to hear about your difficulties.   If wishing could make it so, I would send many of them your way to make things better for you.  Keep us in the loop when you feel like writing.  We do care so much!  Priscilla

David,

Oh - i am just now reading your post - oh my heart goes out to you!

I am sending my thoughts and prayers for healing and better days ahead.
You are greatly missed - and we understand.

Take care and write when you can.
Sincerely,
Sue

[Kaybo]

David sent me an email last night and was trying to update when the site was down - I am supposed to email him today to let him know it is back up (unless he found out last night after I went to bed - 2 hours later for him) - I know he has therapy again today.  I will let him tell you all about it - it does sound VERY intensive, but he thinks it is helping!  YEA!

K

[LADavid]

Thanks everyone for the positive input and the prayers.  I posted more about the program under the Balance Section today -- where I will continue with updates.

But to answer some questions in this thread:

The ENG was just to prove to the testing company that I had no balance nerve on my AN side.  We all knew that, but they had to have proof for FDA approval.

This has been a coordinated effort between House and Enland PT to get me qualified and enrolled in the program.

As for my hearing, I have consulted with my audiologist and the House audiology department and due to the extent of my hearing loss in my "good" ear there is nothing that can be done to restore it -- even implants.  They also said that a CROS would be out of the question because it would only amplify already amplified sound through my hearing aid and cause a distraction rather than a benefit.

And as far as taking anti-depressants -- maybe I should -- but all I take is a Vitamin and an 81 mg asprin.

As you will read in the Balance section -- I am seeing early positive results from the test program -- very encouraging to those of us with residual balance issues.  I'll keep on providing updates under Balance.

Thanks again for your support and my best to you all.

David