ANA Discussion Forum
General Category => AN Issues => Topic started by: allisjbh on July 29, 2010, 07:55:37 pm
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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! :-\
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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
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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.
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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
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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
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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.
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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 ;D
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!
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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
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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
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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
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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.
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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
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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
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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
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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!! ;D Glad it is here for everyone NOW!! :D
K ;D
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You 'guys' are the best! Good to meet you Cheryl and Clarice - thanks so much.
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Good day to everyone!
Allison .... a big ;D 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.
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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
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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
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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
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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!
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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
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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.
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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
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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
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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 ;D
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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
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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
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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 :o (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
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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.
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Allison, Get a new doc and don't look back. I have the BAHA and I am a teacher. It is not your original hearing but it helps, alot, especially in those noisy situations like the gym.
I saw Todd at UPMC for facial retraining and it helped. My face isn't perfect but according to all those around me I look normal. I don't think so but I've never had anyone say...HEY you're face is messed up.
If you have chronic dry eye, see about a punctual plug and Restasis. Both have been very helpful for me. Find a good eye doctor!
You will be okay with the right support. We're here and we can help too. PM me if you want to talk.
My surgery was 6 years ago and I have accepted my new normal. It takes time, a lot of time, and let me tell you I hated hearing that but it's true. Stay strong and welcome to our little family.
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Thank you Pembo. The optimist in me doesn't want to accept a lot of what has been happening - but you're right about the new normal. Reminds me of an old Twilight Zone episode in which a person was born with unusual features so he was sent to another planet where everyone there looked like him! I guess this forum is the different planet for us (thank goodness).
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bad news again... had discussion about emg results today. Doc says no signs of regeneration. tired of hoping for the best
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Sorry to hear that. I'm sure it's very disappointing. Sending good thoughts your way. --Carol Ann