ANA Discussion Forum
General Category => AN Issues => Topic started by: lauralynn on August 20, 2009, 09:47:16 pm
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Hello my AN Family. I had a very upsetting day. I had a follow up appt. w/ my eye surgeon today for my gold weight that was implanted Aug. 5. He had told me that I have scar tissue from the cornea ulcer. I asked him where the scar was and he said,"It's right in the middle of your cornea." That is all he told me about it. Didn't tell me what that meant or anything. But the disturbing words that he said were when I asked, "Will my eye always get irritated? He responded,"What do you mean?" I said, "Well when I'm in my apartment the air conditioning bothers my eye or when I'm outside and it's windy it bothers my eye so I have to wear an eye patch." The disturbing words he said were," That facial paralysis you have will be there the rest of your life. That gold weight that I implanted will be there the rest of your life." I said,"My doctor left part of the tumor in so I will only have temporary facial paralysis. I will smile again and I will have this gold weight taken out and the next time I see you I guarantee I will have some of my smile back." I had my 17 yr old daughter with me. I went out to my car and started crying. My daughter asked if I needed a hug...which I did. I called my boyfriend to calm me down. My daughter opened the car door and asked what the doctor's name was. I said, "Why?" She said, "Coz I'm going to go tell off that doctor!" Well he was with another patient so she told the tech to relay the message....which I can't repeat. So proud of my daughter for sticking up for me though. So AN Family please reassure me that I will smile again....w/in a year I hope. Please tell me that I haven't been wasting my time doing my facial exercises 5 times a day. I see my neurologist (who recommended the eye doctor) this coming Monday. I'm so upset. If I never can smile again....I don't know what I'll do....cry for the rest of my life!
Laura Lynn
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What does he know? He probably said that because that's what he has seen in other patients, most of whom were probably not AN patients. He should know better, but he is not an AN doctor or a facial nerve doctor, he is an eye specialist.
Facial nerve recovery can take a while, but there are stories of remarkable improvement on this forum, including some that take 3 to 6 months, and some that are still improving 4 years later. If the nerve was not completely severed, you will get some activity back. If the neurologist is not enough, you can also get in contact with a facial retraining specialist, who will know what they are talking about when it comes to the facial nerve.
So yes, you will smile again. It may not make the cover of a fashion magazine, but it will be unmistakable to people around you, and they will smile right back. Promise. :)
Steve
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Thank you so much Steve for your kind words. Now that I am home and have calmed down...I'm more determined than ever to get my smile back. So when I do get it back I will pay that doctor a visit and show him!
Thanks again,
Laura Lynn
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Laura Lynn,
HUGS.
I am SOOH sorry you had to endure this medical practioner who is acting more like an insensitive nincompoop :-\ than an educated professional. If your neurotologist said that there was a reading on the facial nerve probe, post surgery, - then do not give up hope, yet, that the facial nerve is going to come back. You are still only at 6 months –post op.
However I am going to be honest and upfront with you that the longer it takes for the facial nerve to come back the higher the chance that synkenisis will be involved- but that does not mean “for sureâ€.
You need to let your neurtologist know that this ophthalmologist is very insensitive to patients with facial paralysis and that he should re-evaluate referring patients to him because of this.
Take a deep breath, sleep on this for a least a week… and sit down and reflectively write to your doctor who referred you to this ophthalmologist. My neurotologist referred me to some great doctors on his team. However not all were great, like the one he referred me to in my home state… I let him know this. They need to have patient feedback… otherwise they do not know better than to keep referring other vulnerable patients to this guy.
I know you have much on your plate. For next appointments try to see if a friend can take the kids (as this is hard on them too) and ask an adult friend to go with you.
DHM
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What a schmuck ! ! Don't let his ignorance upset you.
I agree wholeheartedly with Steve & DHM.
& remember, there's a reason for the saying 'patience is a virtue'
Be patient, take deep breaths; keep a peaceful heart through this journey.
Always good thoughts, Nancy
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Laura Lynn -
the insensitivity of this doctor is incredible.
I'm with DHM, Nancyann, and Steve - don't give up hope. Your surgery was not that long ago and there have been stories on the forum of others who had similar situations as yours and made great progress.
Positive attitude. Chin up.
Jan
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Hi Laura Lynn,
The ENT is not as eperience as a Neuro to make a final and permanent determination about your medical status. I think the Neuro will have a whole different opinion. Just believe in your heart and have faith that everything will be o.k. with time. Patience and strength are the key words.
Vivian
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Hi Laura Lynn-
As everyone has noted, ophthalmologists really aren't well versed in facial palsies/paralysis. That said, he should have kept his opinions within the scope of what he actually knows about, rather than attempting to predict something he knows VERY little about. I see a very skilled opth. guy - but what he is skilled at is eyes! When I first went to him for a temp eye weight, he tried to get me to go with a gold weight and he also wanted to do the corner stitch to pull my lower lid up. This was when I was about 3 months post - I declined everything but the temp weight and in another several months my lower lid was back to normal and I no longer needed the weight most days. Give yourself time and try not to get discouraged. Talk to your neurotologist about recovery and about possible referral to a facial therapist. And, unless you really like this opth., consider finding a new one ...
hugs to you,
Debbi
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I have 2 opthamologists in the family and they both reassured me that my eye function would improve and it DID! I also had a 4 cm tumor and woke up to complete one sided facial paralysis. At first I used drops hourly, taped my eye shut, never had tears, couldn't blink...it was awful. However my eye doc relatives said don't get the gold weight.
Fast forward 5 years - I'm back to wearing contacts, I only use Restasis twice a day, my blink is almost normal, I can muster tears now and then and I never did get the weight.
I also went to a facial therapist in Pittsburgh. He has done a lot of research on facial paralysis/numbness. He has seen improvement in patients up to 15 years!!!! For me it's been 5 years and I still see and feel recovery. I may never be the same again, but I actually have some vacation pics this year where I almost look like the old me.
Stay strong and like others have said, no doctor has all the answers.
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Is this the same eye doctor who yelled at you before?
Dump him.
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Thank you all for your kind words and advice. Yes it is the same doctor that yelled at me. My neurotologist told me he was the best, that is the only reason I went to him and continued to see him. I will be changing opthamologists and will see the idiot one once I have some of my smile back....just to prove him wrong! I know I will smile again...I am more determined than ever now. Thanks again everyone.
Love,
Laura Lynn
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Stay strong and keep moving forward.
DHM
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I agree, dump that horrible doc. My neurologist was almost as bad. I did my research, talked to doctors I trusted, and found someone who is positive and supportive. I refused to take "this is how it will be for the rest of your life" for an answer. And guess what? At 7 months out i finally got some movement. It's slow but I'm now almost 9 months out and I have a smile that children in the grocery store recognize and respond to. It's a very small smile, but it's a smile!!! Hang in there. It will most likely get better when you least expect it.
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Laura Lynn ~
Just popping in to agree with the rest of the folks that (a) the ophthalmologist is not only making broad and unsupported assumptions but, (b) is a jerk for telling you these terribly negative things with no basis in fact. Granted, it may take longer than you would like to regain your normal facial functions and things may not be 'picture perfect' - but you will improve. This condition is temporary and can be addressed with a multitude of approaches, from physical therapy to surgery, if need be. Your fighting spirit will serve you well in this struggle. I agree with DHM that a thoughtful, civil letter to your neurologist advising him that the ophthalmologist he referred you to is completely tactless and does as much harm to his patient's emotional well-being as he may do good for their vision problems, at least in your case. He may or may not choose to respond or drop the ophthalmologist from his referral (they may be golf buddies or something ) at least you'll have made him aware of the other doctors shortcomings and perhaps helped another AN patient who may step into the path of this hope-killing ophthalmologist. Please don't allow one uninformed, thoughtless doctor to derail your progress toward normalcy or discourage you to the point of despair. From your follow-up post, I can see you're using this doctor's caviler attitude toward your recovery as an impetus to 'show him' and thus, emerge victorious from your struggle to get your smile back. Good for you!
Jim
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Hang in there Laura Lynn, and PROVE HIM WRONG! The best revenge. ;)
Sue in Vancouver, USA
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Hi
My eye doctor was a jerk to. he put in a plug to clog my tear duct. But the time I got home I was in more pain then I was with the surgery. When I called him to say my eye is killiing me, he said that He did not do anything that it must me something else. Long story short, The plug came out and scratched my cornea really bad. He swares it wasn't him. Yeah right. Anyway I am 4 months out and I just began to gt movement in my face three or 4 weeks ago. I improve every day. Have faith it will come back!
Marybeth
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Laura Lynn,
I'm sorry, I can't speak for exactly what you are going through but I do know what it feels like to get a discouraging report from a doctor. My GP made it seem like my life would be hopeless after my AN surgery. He had an entire meeting revolving around "setting me up for what my quality of life will be like after AN surgery". He scared the sh*t out of me with the things he told me were all but certain! I felt like a hopeless case, and vowed to prove him wrong.
In his defense, he wasn't the most experienced in this area.......but still-sometimes they should offer more hope than doom and gloom (not asking them to lie, just asking them to focus on the positive).
Happy to report that I proved him wrong in all aspects, and I hope you can say the same soon.
(hugs)
Adrienne
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Hi Lauralynn,
What a horrible man -- I'm glad to hear you're dumping him. Never say never and don't let anyone else convince you of it either. Everyone heals at their own pace. Do your facial exercises and keep your wonderful positive attitude. Proving this idiot wrong is the best revenge. Cheers to your daughter for telling him office even if she had to go through someone else to do it -- I hope he got the message! Definitely let your neurologist know how this man treated you, he may be book smart, but he obviously is NOT a good doctor!
Best wishes,
Wendy
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Laura Lynn,
I also had total facial paralysis on my left side after surgery. It took 3 months before I had even a tiny bit of movement. Around 18 months I got quite a bit of movement. I'm nearly 4 years out now and am still seeing small increases in my face. I can smile pretty well now. My friend told me that my faciall paralysis isn't really noticeable to her anymore. At my 6 month appointment with the doctor who did my surgery, he told me that my face wouldn't come back. At that point I had very minimal movement. Hardly any. I was devastated thinking I would be like that for the rest of my life. Time has proven him wrong. I don't think he was trying to be unkind. He just didn't know. I'm happy to be able to prove him wrong. It will take patience and time, but you will do the same thing too.
Jean
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Oh Jean I just want to give you a big ole HUG.
I remember you responding to me, at my 6 month post op, and sharing a photo when I was so bewildered. That was so encouraging when I thought I was THE only one in the world going through this... and I was told that where I was at 6 months was where I would be. 2 year anniversary for me tomorrow... and more upper lip movement today than just 2 weeks ago..
You are such a sweetie to keep helping us.
As Pearly Whites (Phyl) puts in HUGGLES!
DHM
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Big hugs to all of you that responded! I'm feeling much better today and am more determined than ever to get my smile back! I will continue my exercises....just last week I noticed my lower left lip started tingling....a little bit each day. I had no feeling in it what so ever before. So I know things are happening. I know I took my smile for granted before and probably didn't smile as much as I should have. Well when I start to get my smile back I'm going to have a big celebration party and I will smile so much everyday after that that people will wonder....why is that lady always smiling? ;D I want to add that I have an appt. w/ my neurologist this Monday and am telling him the whole eye doctor story and asking for a new ophthamologist. I want someone else to look at my eye and explain everything to me. That other jerk never explained, he went over things really fast. I will keep you all posted.
Thanks again my AN Family,
Laura Lynn
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well dearlady . i got 20 months since my almond sized tumor was removed. now i'm 58 was 56 when they did surgery. They told me i would have a small "hair lip" but on old men it didnt look so bad..........
well let me warn you about a few things. the more you do those exercises, the better and quicker things will be for you. i didnt them religiously for months. and saw nothing. BUT my family saw it, my co workers and friends saw it.
looking at my ugly puss everyday seeing what wasnt right, i couldnt see what was getting better.
exercises yes. do them until you can feel some tired ness. electro shock9 about 5 volts ) is another way they helped me to twitch those nerves and prove to my self we were doing something.
now i have a slight 1/4 inch droop in my rt eye (my an side) which i still cant "blink" i can close it and wink. my teeth are finally being fixed after a year. and my face i cant shave without 2 hanbds
BUT its all minor stuff.................and what i have face and rt eye wize at 20 months is light years ahead of where it was at 6 months
it takes time
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Laura Lynn,
After all you've been through, your poor body needs to take one step at a time. The hospital and rehab experience would have set me way back, but you just marched outa there ready to take on the World.
I'll blame the tumor (and the fact that your signature is a little out of date!, Hunnie) . . . did you ever have your GK, and are you scheduled for your BAHA? I don't remember your sharing the radiation experience, or did I miss the thread. My apologies if I did.
Keep up the good fight.
Report the guy to his professional organization!
Kudos to your daughter.
You'll get there. Just keep trying to smile. It's good exercise.
Nancy
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Hi Lauralynn,
I'm so sorry for what you've gone through and agree with the sentiments of everyone here. Your attitude and spirit are great! I hope you can find a new doc soon; one who will really help and be understanding.
Keri
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Hey everyone,
Just saw my neurologist yesterday and filled him in on the ophthamologist story. He was disgusted of course and commented that he had some other complaints recently. I believe he is taking him off of his referral list. He recommended another eye specialist whom I am seeing tomorrow (Aug.26). I'm anxious about meeting him and anxious to get some answers. My neurologist reassured (just as my AN family has) that I will smile again. He said if I don't show any improvement by next April (whilch will be a year) he said I will have the option of having an outpatient procedure done that involves taking a nerve from the tongue. Has anyone had to have that done? Forgot what it's called. I'm determined to get my smile back on my own. I've been doing my facial exercises daily as much as I can. My younger kids commented to me (my 10 and 8 yr olds) told me my bottom lip is looking better. I looked in the mirror...and I said, "you know....it is starting to look better." My 8 yr old asks if I feel anything in the top lip yet. I tell her no, but she believes the tingling in the top lip will be next. I have many of you praying for me, friends and family praying for me....so I know it will happen and when it does I'm having a big party! It's going to be the happiest day in my life when I can smile again.
Laura Lynn ;D
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Lauralynn -
glad you're seeing another ophtamologist today - and that your neurologist is removing the first one from his referral list.
I'm hopeful your smile will return on its own with just the facial exercises you are doing.
The surgery you are referring to is called 7-12 jump and several on the forum have had it; including my two partners in crime Kaybo and Lori67. Kaybo went on to have T3 surgery - which worked wonders for her. Lori just had 7-12 in October and is very pleased with the results.
Jan
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I believe in you Laura! On a positive note being around local AN meetings for the last couple of years I have seen very much improvement on our AN patients at our approx. 6 month get togethers. Best wishes, Mickey
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Oh Laura Lynn here's a big ole cyber hug for you! <squeeze>.
I too had to endure a very insensitive ophtamologist. I asked for his experienced response in regards to facial nerve recovery. He was quite negative and made some comment that next I would ask for stats. He said not to get my hopes up. I had an ENT who was so comforting during my desperate feeling days. She said that it is enough to have to deal with having an AN and then to get through surgery to only have to deal with complications. It is as if you are treading water and just cannot get to the other side and be done with this. I cried because I felt she used an analogy that made me feel she understood. He last words were don't give up. When you have complications from surgery you need some HOPE to move forward. Not false hope but negative people should not be in positions where we as patients are hanging on their every words looking desperately for some hopeful words.
I honestly feel that part of the fact that I fell so far into depression following my surgery was first of all I was not expecting facial paralysis (they were not sure I had an AN so my research was all over the map) and secondly I encountered some negative medical professionals. I took their words which now I know was foolish. I am getting my face back and if your nerve was not cut you do have HOPE and believe in yourself. Be strong Laura Lynn, pick yourself up dust yourself off and show your daughter the strength that you do posses. Some days you just may need to dig a wee bit deeper to find it.
I protect myself from negativity I repeat this to myself: I choose to surround myself with people who make me feel good about myself and eliminate those who do not!
Michelle >:(
I understand.
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BIG Gianormous Cyber Hug to Laura Lynn!
I know the recovery road us rough at the moment. You will come out of this fiasco stronger- and most of all in character.
Hang in there!
HUGS.
DHM
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Laura Lynn ~
Thanks for the positive update. I'm pleased to learn your neurologist was disgusted by the clueless ophthalmologist's behavior and unnecessarily negative feedback. Removing him as a referral is the logical thing to do. I hope that by now, you've had a successful consultation with a 'new' ophthalmologist who will impart some encouragement instead of discouragement.
The nerve graft (the '7-12 jump', as Jan accurately described it) is a relatively common procedure to reanimate the face. If it becomes necessary, the folks here who've undergone the procedure can tell you how it goes and what to expect. Of course, I hope your facial paralysis is, indeed, temporary and you won't need the nerve graft. Still, it's good to know that it's available.
I can only agree that the day you can smile again will be the happiest day of your life - and I'll add that a lot of folks you've never met (forumites) will be sharing in your joy on that day. :)
Jim
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I had a Gold weight for approximately 16 months and I too had my tumor debulked in order to preserve my facial nerve. Five months after surgery I had an emg done on my face and the Doctor could not detect any movement. He told me to not give up. Gradually things started happening. I had the most improvement from 12 to 18 months. It seems to me there is no normal with acoustic neuromas. I found Prayer, great doctors (I would stay away from that negative one) and a positive outlook helped it get better. My face is about a one on the House-Brackman scale. I really wanted my smile back and I have it. Have you ever noticed how many people have crooked smiles or faces naturally? Hope you heal completely. Blessings, Cath
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...I have many of you praying for me, friends and family praying for me....so I know it will happen and when it does I'm having a big party! It's going to be the happiest day in my life when I can smile again. Laura Lynn ;D
Laura Lynn,
I am late to this thread...but so glad to hear your dumped that crazy eye doc!
My thoughts and prayers are with you too.
And BTW - i think you should have a party now AND a party later - you deserve it!
I believe your smile is already shining thru and will only get better as time goes on!
All my best and continued healing.
Sincerely,
Sue
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Thank you all again for your sweet and encouraging words. I met with the new ophthamologist yesterday. What a difference! He is super nice and took his time with me. He even apologized for what the other doctor said to me. He told me that every AN is different and he encouraged me to continue my facial exercises. He took a picture of my eye and showed me on the computer the "scar tissue" that I have on my cornea. He said he would describe it more as a haze than scar tissue. He referred me to a cornea specialist and I will see him Sept. 9th. So of course I will keep you updated on that appt. The new ophthamologist answered every question I had and I felt very comfortable with him. I will add that the nurse that I spoke with there used to work w/ the other (jerk) ophthamologist. All she said to me was, "I used to work with him." In other words she was telling me w/out saying anything that he was not pleasant to work with. Wow. The new doctor wants to see me in 2 months. The jerk didn't want to see me for 4-6 months. I'm very happy w/ the new doctor and so relieved that I don't have to go back to the other one. I will pay him a visit though when I get my smile back....because I know I will get it back. As always I will keep you all posted on things. Thank you all again for responding. You all are so sweet.
Laura Lynn ;D
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Laura Lynn,
That is great news! :) Good for you for taking the bull by the horns...
Keep moving forward.
HUGS
DHM
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All's well that ends well. :)
Steve
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Laura Lynn -
it sounds like this new doc knows his stuff.
Thank goodness! Please keep us updated.
Jan
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Laura Lynn ~
Thanks for letting us know what happened with the new ophthalmologist. You've obviously found a caring and patient-friendly doctor who respects you. Things are looking up! I believe this experience demonstrates the sometimes vast differences between doctors, aside from their diplomas. You did the right thing and I'm pleased to learn that its paid off for you. Good work! :)
Jim
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LL~
Glad to hear things are going well and the new doc was SO MUCH BETTER! YEA!! I am sure that you will get your smile back on your own, but if you ever need to talk about other options, please PM me!! ;D
K ;D
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Laura Lynn .....
Late here but wanted to add that I am very relieved to read that you now are in the hands of a qualified, experienced, AND compassionate doctor ...... the combination we all strive for!
Just relaxing under his care should let your body "do its thing" and heal much more quickly!
My prayers for a steady, reassuring progress.
Clarice
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Hi Laura Lynn,
It sounds like your found yourself a keeper! It's amazing what a jerk the other doc was and wonderful that you found someone so caring and compassionate as this new doc. Keep doing your exercises things will get better and better. Keep us posted!!!
Wendy
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Thank goodness you found a good doctor! Please keep us updated.
Both my husband and I have had our shares of jerk doctors - it is so frustrating and hopeless to deal with some of them.
Grace