New to this forum

[allisjbh]

You 'guys' are the best! Good to meet you Cheryl and Clarice - thanks so much.

[grega]

Good day to everyone!

Allison .... a big   to you for having the courage to post your concerns and questions ..... I've found that that goes a long way toward boosting your own confidence as you face ... and overcome ... your difficulties.

First, I try to learn pros and cons of an issue, so re that ENT that said he doesn't like the baha .... I would ask him why he thinks that. And then go on to find all the "pros" to help me decide.

Next, I echo Jan's and others' sentiments re the baha.  I've had mine less than 2 weeks, and I'm very pleasantly impressed at how much better I can hear in certain loud situations where I need it.  The baha tester was OK, but the real thing is so much better for me.

I hope for you the best in tackling what you face ...... support for you from this forum is certainly ever-present!

Greg

ps ... I went back and re-read your first post.  I think that ENT has his own problems that are coming out as negatives to his patients.  You need a doc who will encourage you, and NOT say any side comments that are, in any way, negative.  He don't need a slap on the back .... he needs a slap in the face.

[GRACE1]

First of all:  Optimism is your best friend.  Try your best not to lose it.

OK, I will say it:  That doctor sounds like an insensitive & uninformed jerk.  Please find 1 or 2 more doctors to get their opinions.

I am sorry you are having to deal with so much.  We are all here for your.

Grace

[lori67]

Hi Allison!

Glad you found us!  I can see why you'd be discouraged after listening to that heartless doctor!  That's awful that he's not supportive!  If he doesn't like the options you've suggested he could, at the very least, offer you some other options that he thinks might help you.  Time to doctor shop.

I have a BAHA and I'm very happy with it, as are a lot of others here.  Since I'm assuming your doctor does not have one himself, I think I'd take his opinion on the matter with a grain of salt!  Give the demo a try and decide for yourself.

I also have facial nerve issues and had a nerve graft done at 18 months post op.  Still not perfect but better than it was.  There are so many options out there now to help us - please don't get discouraged - sometimes it takes a lot of research to decide what's best for you, but it's worth it. 

I know how hard it is to have to face new people, but it gets easier when you start to realize that people will still see you as the same person you've always been.  I'm sure you will be an inspiration to your students.  I volunteer at the school and had a hard time at first.  You might get some questioning looks, but the kids quickly realize you're no different than any other grown-up.  It's a good lesson for them to learn and you wind up learning a lot about yourself as well.   

Here's to better days ahead!
Lori

[Jim Scott]

Hello and welcome, Allison ~

I'm sorry to learn about your difficulties since your AN surgery and I hope and will pray that they can be addressed and resolved, soon.  I can't offer too much in the way of advice because I haven't had your experiences and, although I'm SSD, I chose to adapt and don't have a BAHA (but that could change at a later date).  However, I can offer you my complete support as you struggle with your recovery.  I agree with previous posters that you should pursue a second opinion on your facial nerve recovery as well as the possibility of receiving a BAHA.  I trust the doctors at Emory will be more encouraging.  Because, as you mentioned, you do have sensations on your face, the nerve is very likely viable and in time, it's entirely possible that your facial mobility will return.  Keep that distinct possibility in your heart and please, consider yourself part of our AN family.  Use the forums as a resource.  We want to help - and we want you to regain your confidence.

Jim

[allisjbh]

Thank you so much Greg, Grace, Lori, and Jim. Each of you. It is obvious from each post that this is a very warm-hearted forum!

[lauralynn]

Hello Allison,

I can totally relate to what you are going through.  I had my surgery 4/09 and when I went to see my ENT before surgery, I had alot of questions.  He answered them all but I didn't get the answers that I should have gotten.  I asked how long would I be out of work, was told 6 wks and I was out for 5 months and even then I wasn't ready to go back.  I asked about how long would I have facial paralysis and was told a couple weeks.  I was never told about how to care for my eye and never told I would need another surgery to have a gold weight implanted.  I wasn't told that when my nerves regenerate I might experience the worst headache ever imagined.  The list goes on and on.  If you do a search of me and my surgery you can read just the few problems I had after my surgery.  I will give you some words of encouragement though, for months I had no movement on my left side of my face but I continued to do my facial exercises (I found exercises on this site) and one day I was taking my picture (i did that every couple of weeks to see if I noticed any changes in my face).  Well this one day I looked in the mirror and the left corner of my mouth moved just the slightest bit!  I couldn't believe it!  I screamed and my kids came running because they thought that something happened.  I was so excited!  Since then I have gotten even more movement on the left side.  I will pm you and give you more info.  I went through some depression issues but I have a great support system and this site has been a big part of that...so stay in touch with the site.  There are such wonderful people on here!  You will get through this, I know you will.  Things will get better, it just takes a bit longer than we would like, but they will get better. 

Take Care,
Laura Lynn

[6pick]

Hi Allison, and welcome.

Permit me to offer a couple of tidbits.

I've just seen Dr. Chang of Stanford U. I believe he is considered one of the finest. When I asked him about the BAHA, he said he didn't like it. You know what I think about that? He doesn't have or need one. His opinion on that matter doesn't mean much. Jan, on the other hand, needs a BAHA and has one. I'd listen to her - in fact, I AM listening.

As for your insensitive thug doctor. I am a former teacher and I have opinions about former colleagues who share your doctor's insensitivity. There is a certain straight-forwardness desired in a teacher that encourages the child to grow - if it is applied appropriately. It is inappropriate if it kills the child's spirit. In a situation like yours, I'd advise the parent of a child receiving such treatment to transfer to another teacher . . . wouldn't you?

Glad you found this site.

[msmaggie]

You have gotten a lot of good advice from my fellow forumites, and the one that resonates the loudest is ditch the uncaring, unfeeling doctor!     I also agree that you should "wait until the dust settles" before you start making plans for more surgeries.  It can take a year or two before you really know what you will be dealing with.
I don't have personal experience with the BAHA but have only heard good things from those who have tried it.  Research for yourself and see what you think.
 
 Welcome to the forum!  We don't have all the answers, but we will help find answers and/or hold your hand while you go through the tough times.

Priscilla

[allisjbh]

Laura, 6pick, and Priscilla,
Thank you for your words of encouragement. It is so nice to feel that we are all supported so much by each other.
Allison

[mimoore]

Welcome Allison!
Some doctors just need a swift kick in the a$$! I met my fair share of doctors with no bed side manner at all. Don't they know a tiny bit of hope would go so far.
PM me anytime. This is not easy I do really understand as I was not expecting facial paralysis after my surgery. I have a few good tips I could share with you if you are interested!
Life is good for me and it can be again for you too! HUGS
Michelle 

[Susie]

Allison,
I am a "newbie" again to this site. I had complications (facial paralysis) after GK and struggled with some of the same things that you are struggling with. I also work with children in a school setting. I had to "fire" my ENT and found a great one in the Atlanta area ( I drive 4 hours for an appt). I also found a great facial therapist and encourager who has helped me in so many ways.   Please contact me if you want to talk. It's a journey......
Take Care,
Susan

[leapyrtwins]

Allison -

I just had a wonderful appointment with my neurotologist yesterday and can't stress enough how crucial he was to my recovery.

It saddens me to know that not everyone has a good doctor that they can rely on for the issues they are facing post treatment.

Not to beat a dead horse, but please find a doctor who is compassionate and supportive and can help you on the rest of your AN Journey.

Best,

Jan

[moe]

The ENT I saw yesterday was not from my surgery group at Emory! I will be seeing the Emory doctors in September.

Hi Allison,
A big welcome, you have gotten a great response!

So the ENT that you saw, was he like a fill in? You mentioned he is not on the same team as your surgery team. I CANNOT believe that he would say:

since I've had no movement on the right side of my face that I could end up looking like a concentration camp victim from the atrophying (sp?) muscles. After telling him that I was interested in the neurofacial retraining therapy, he said not to waste my time. Other than the weighted eyelid, the only procedure he encouraged me to have done was the permanent reanimation surgery.

I'm appalled that a professional medical doctor would say that. 

Your neurotologist appt in Sept is right around the corner, so hold your questions for him!

As far as the facial paralysis, I have 4 years experience in that field. I can totally empathize.

 Since my nerve was cut, I have had different approaches to "reboot the system", and just recently had "facial reanimation" surgery.

 My facial nerve was "reanastomosed" during the original brain surgery, and should have "come back to life" but it didn't. Then I had the procedure that Lori had, and waited.......nerve still stubborn....Hence my newest surgery which is showing some results. I'm feeling OPTIMISTIC for you that you will start to get movement. Was your nerve cut or stretched? That makes all the difference.

 Be patient, I know that is SO HARD, especially with your work coming up. I think the BAHA would be the best idea as you go back to work, and people will see that you are the same teacher.( Also things always look worse for you because you have to see yourself in the mirror every day.) I would suggest continuing the facial exercises, and stare at yourself in the mirror every morning when you do them. I too tried the electrical stimulation sometime after the 6th month point before I read that you are not supposed to do that! But it helped my droop from the atrophy, but I really don't think I looked like a concentration camp victim (I still can't believe he said that).

Most docs say wait 6-12 months before doing anything drastic, because the nerve DOES need time to just heal on its own.

Anyway, welcome again, hang in there, just keep truckn! Let us know how things progress for you.
Maureen

[allisjbh]

Michelle, Susan, Jan, & Maureen,
Hi and thank you for the positive messages. I hope my visit to the doctor in September will be informative and encouraging - will keep you posted.