New to this forum

[allisjbh]

My surgery was on New Year's Eve morning 12/09. I've been on an emotional roller coaster ever since. I knew very little about what to expect after the operation, and me being an optimistic person has made this ordeal all the worse. I've hoped and prayed for the ideal recovery, but I keep getting bad news.

After an ENT appointment yesterday, I've been very fragile. The doctor said that he did not like the BAHA device, and that most people do not like the transfer devices. He said that 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 stay confused on which direction to take - heck, I'm not even sure about what kind of facial exercises I'm supposed to be doing on my own! At the end of speech therapy, the therapist gave me directions that seem to counter everything I read. She said to chew gum - then I read that I shouldn't. She said to use either extreme in temperatures on my face: ice in a towel or microwaved sock w/rice. Since then, though, I've read that only warmth should be applied. The therapist also sent me home with a tens unit for electro stimulation - of course, then I read where that can do more harm than good!

I have an appointment with my neurotologist in September to administer the ENG so that I will know if the nerve is still alive. It has to be alive if I can feel things on my face, and my tongue and teeth feel electrified many times, right? I also get the spidery nerve itchy feeling on my face at times.

My confidence level has been so down. This is not a good place to be when I will be meeting my elementary students and parents in just a few weeks. I am hoping that by interacting in this forum I will get good ideas and encouragement. God bless everyone on here who has or has to have this brain surgery! There are very few people who have the capability to understand what we go through!   

[Tod]

Allison,  welcome. About the time you were having surgery I was getting the MRI that diagnosed my tumor. I know that it can be very difficult to remain positive when things do not go as planned or hope. I had initially planned to be back at work in a month. Instead it was three months. Lots of disappointment and anxiety possible.

It sounds to me like you may wish to see by another doctor to get a second set of opinions. I know others will have much more to say on the topic, but seven months out is probably too early to resign yourself to no improvement. People here seem to have a wide range of recovery times, so I would not give up hope if I were you.

Good luck to you, and know there are a lot of supportive people here that have some understanding of what you are going through.

-Tod

[opp2]

Wow, you certainly have had a hard time of it, and a really bad day. Virtual hugs, and cyber strength to you. If it helps, my ENT said he didn't like the BAHA either. However he's only one man and he is of course, entitled to his opinion. I haven't even begun to consider what if anything I'll do about my SSD.

There are lots of wonderful folks on this forum who can help you with managing your facial paralysis, and can offer support in the form of referrals, experience and most of all, like you said, an understanding of exactly how you are feeling.

All the best and keep that optimism. It will truly help you, even when you feel like it won't.

[dalern]

Hi allisjbh,
You have really been through the ringer!  And then some.  I know exactly what you mean about those who have not gone through brain surgery not understanding.  I did not have an AN, but I did have another brain tumor.  I totally get what you are saying.  Reading your story, and being a nurse, my first thought is that you need another opinion.  I would encourage you to get a consultation elsewhere.  It does not mean you are committing to changing doctors, but just checking out your options.  I have yet to hear one person on this forum (although I am new too) say that they are dissatisfied with their BAHA.  I had my BAHA surgery, but will not have the processor til the end of September.  It sounds like your doctor just might not have experience with the BAHA.  Please feel free to email me privately (dale@dalebarnesrn.com).  I have not had any of the facial paralysis issues, but there are plenty of folks on this forum who can speak to that.  Wishing you the very best,
~Dale

[Barb909]

Hi Allison,

I can feel your disheartenment (a word? Is now!) through your words. Although I have not had treatment (yet) I have read enough here in the last 5 months that I can feel your pain. And, I am/was a teacher and understand what the next month means.... I now mentor new teachers and help others in need. Wish you were here. Anyway, as other have just said, there are many on here that LOVE the BAHA. In fact, I have only heard good about it. If I end up SSD, I will definitely look in to it and I assume, from what others have said here, will get it. They will see your post and reply, I am sure. Also, there are folks with the facial nerve issue. They will respond also, I think. They are "regulars" here and are always of so much help! It seems I read here somewhere that the nerve restores sometimes way after surgery. Just takes time and patience......

If you just want to talk, please email me. I'll send my number. My heart goes out to you.

Barb

[allisjbh]

Thank you so much for your kind responses Tod, Opp, Dale and Barb. I have a feeling I will be spending a lot of time on this forum reading. I'm amazed already at the variety of differences in the individual experiences of the posters.

Allison
ps - A clarification of my earlier post - The ENT I saw yesterday was not from my surgery group at Emory! I will be seeing the Emory doctors in September.

[Kaybo]

Allison~
Please don't be discouraged (well, it is OK to be TEMPORARILY discouraged) - sounds like this doctor was a big buffoon and really doesn't know a lot of what he is talking about!  Not anything against Dr's at all but you have a WHOLE BUNCH of people on here who have actually experienced these things for themselves!  You are not even a year out - I would NOT do anything regarding your face yet!!  Give it time! And by all means...seek another opinion!!  Others will come along that have more input into reanimation.  I had my surgery so long ago that I was unable to do any of that (I had surgery in 1995 when I was 25) and have had facial paralysis since.  I was also a teacher and went back to teaching 1st grade 3 months after my surgery (my tumor was very large & I had many complications).

I would usually offer to call you about now but I am in the middle of a move and do not have my regular phone service and what I do have is AWFUL (I can't even talk to my dear friends that I miss so much!).  Please PM me if you would like to chat more!

K  

PS - I did have the T3 to help restore my face - there are different things out there - and I am looking into a BAHA now that I am in a big city where I can more easily access one!

[leapyrtwins]

Allison -

don't want to sound harsh here, but I think you should find a new doctor.  The one you describe sounds like he's part of the reason you are discouraged.

You have found a very valuable resource in this Forum - as lots of us here can help you with your questions and concerns.  Many forumites have had the issues you have been facing and have found support and solutions by networking here. 

I have a BAHA and absolutely adore it.  So much in fact, that I became a Cochlear volunteer and spend many hours telling people of my experience with it and encouraging them to look into it.  I just spent 2 1/2 hours at an event tonight and not one person there who had a BAHA had anything negative to say about it.

The BAHA is not for everyone - some object to having a titanium rod implanted into their skull (which is totally understandable) - but it's a great option for lots of people. 

I strongly encourage you to try the BAHA demo - I personally found it highly impressive - and form your own opinion.  If you need to find a doctor in your area who performs BAHA implants, go to www.cochlearamericas.com and look under "Find a Clinic".

My neurotologist has done hundreds of BAHA implants and so far only one patient decided it was the wrong decision for her.  IMO, that speaks volumes.

If you have any questions, or want to know more, about the BAHA please free to PM or email me.

Best,

Jan

[cindyj]

Hi, Allison...I am sending you a PM (personal message) with my contact info - I am also in the Atl area as I assume you are since Mattox was your surgeon.  I will also give you info about our next Atl Support Group meeting, if you would be interested in coming. 

Know it's so tough to know what to do when the medical world is giving you conflicting information.  Hope you can find the answers that are right for you very soon.  There are many folks here who can give you their stories and, hopefully, you can benefit from them.

Cindy

[Lizard]

Allison -

don't want to sound harsh here, but I think you should find a new doctor.  The one you describe sounds like he's part of the reason you are discouraged.

You have found a very valuable resource in this Forum - as lots of us here can help you with your questions and concerns.  Many forumites have had the issues you have been facing and have found support and solutions by networking here. 

I second what Jan said, you need to find a new Dr., many of us have had to go through the same issues with our Dr's...search for a new one and if you don't like what you hear...move on.  You Dr. should be in your corner, and they certainly should not be discouraging you!  Even if your nerve was cut, there are still options for you.
hang in there, sending you lots of virtual hugs XXXXX
Liz

[allisjbh]

Kay, Jan, Cindy, and Liz - Thanks so much. I can 'feel the love' through your posts. It's too bad I didn't join this forum when I was first diagnosed. It might have saved me from a lot of lonely despair.

[Lizard]

Allison,
I hear you on that one, I didn't find the forum until I was about 16 months post op...it has been an amazing tool in my recovery!
Liz

[Cheryl R]

I agree with the new dr.     My view from some  experience and reading here is that some ENTs don't have a clue about ANs!    They have some basic knowledge of what they are but what the post treatment recovery and care is not their expertise unless they trained with a neurotologist who did them fequently.          Even then, one does not know for sure as some of neurotologists are big on the inital treatment but do not do well with the long term problems some people have.   Others do well with not as many problems.
  You also will hear that one needs to do exercises while a facial therapist may say no as the nerve just needs to heal before the muscles will work.          Some therapists do not even see patients until around a year past surgery to see how the healing is going.
Facial muscles are of a different fiber than regular muscles so have some time before atrophy.               It is frustrating as one just wants the face to be looking better!                        I do not the have answer as to which dr might be the best for you to go to and get the right answers as can depend on yoru location and ins.                              Do not give up though as you have still time to do some healing.                                    Cheryl R

[CHD63]

Allison .....

You already have some good advice from others.  I did not experience facial paralysis so I cannot help much there.  I do, however, want to welcome you to this forum.  As you have already discovered we are a group of very caring, supportive friends who collectively understand your roller coaster ride.

I will have to add that I, as well, think you should seek another opinion from another physician.  It certainly sounds like the doctor(s) you describe has(have) little understanding of ANs and/or facial paralysis following AN removal.  Any doctor who does not give me hope is soon a doctor of the past.

Best thoughts and many prayers.

Clarice

[Kaybo]

At least you found this Forum within the 1st year or 2...I didn't find until 12 years out!  LOL!  Since the web was barely around when I had surgery, I don't think it even existed!!     Glad it is here for everyone NOW!!   

K