ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Darlene on July 21, 2009, 08:12:37 am
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Hi Everyone,
I am 3 weeks out of surgery and have been told my facial weakness, is temporary. I have been pretty much home for the last three weeks but have finally started to go out. While I am extremely grateful for how my surgery has turned out and feel really really blessed when people first see your face it is very obviously a big shock to them.
As a matter of fact my 9 yr old son was totally scared of me for the first two weeks.. he would run up into his room and literally avoid all contact with me. I have to admit between the face and the scar I could understand why, but it certainly hurt. He has now adjusted and I know that eventually most people will know and it will be no big deal but the first encounters are tough. I feel like I shock them and then they pity me. Not exactly a wonderful feeling and it kind of makes me want to avoid all new contact. I realize that total avoidance is unrealistic but did anyone else feel this way? I can't even imagine when I have to go back to work, I really don't want to spend all my time giving people explanations and as a health inspector I deal with new members of the community everyday. It is especially tough because I didn't really tell a lot of people about the tumor or the surgery so for some of them it is a total surprise and requires a full explanation. Do you ever just not give an explanation or is that counterproductive?
BTW: Totally love the new spellcheck option!
Thanks
Darlene
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I would address it, but that is just me...I might say "Back on the job after a little brain surgery...everything went great - just waiting for my face to catch up with the rest of my body..." or something like that & go on. People will take their cue from YOU! I have found that their is really no pity after they realize that you are OK with it...I just went full steam ahead - it truly is what you are on the inside and how you react...
K
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Most people I know already knew from update e-mails my husband sent from the hospital. But I agree with Kay's advice on having a brief explanation ready.
I have a question for you, though. Did you wake up with facial paralysis, or did it occur later? Delayed facial paralysis is generally temporary and will usually resolve more or less completely. Immediate paralysis is more of a guessing game about timing and extent of recovery. If it was immediate, I recommend that you seek out a facial nerve specialist as neurosurgeons are specialized in neurosurgery, not recovery from nerve damage.
Sara
P.S. Here's a great site that explains facial paralysis as a result of surgery:
http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm
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Thanks K,
That is really true, I guess I just need to pull myself up by the boot straps and make no big deal of it. I am in general a very reserved person who doesn't share personal stuff easily, so I guess I am just going to have to tell myself to get over it and move on. It really is quite odd because I have never been someone who cares what a person looks or acts like or their ability. I mostly care if they are kind in their actions and words. I guess just seeing peoples shocked face when I talk and half my face doesn't work or my words slur will take a little adjustment. Thank you, you are definitely an inspiration.
Darlene
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Sara,
I woke up with the facial paralysis but the doctors did say my face responded well during surgery. I actually wondered the same thing and I appreciate the link. I was under the impression you don't do anything for a while but wait and see if it responds so thanks for the information.
In hindsight, I should have told more people about the surgery and consequently the results but I guess as I am out and about they will learn.
Thanks,
Darlene
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Darlene~
I really think you will be surprised at how well it goes...I personally don't think there is much "pity" just mere curiosity! I think you will do fine - we are behind you all the way!
K ;D
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Hi Darlene
I had my surgery a little over a year ago and like you I expierenced about 3 weeks of temporary facial paralysis. I too struggled at the reactions that people had when they saw my face.I think that I was my own worst critic than anyone else was-it was way hard to see myself that way! I returned to work at 6 weeks when some of the paralysis was still resolving and I too found that an upbeat, positive response put my coworkers at ease. The more that they saw that I was the same person as far as my work went, the less it was even an issue and the more that they understood what was going on with me, the more supportive they became. I too am a very private person but you will be suprised how kind and supportive people can be when they understand a little better what you have been and are going thru!
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Darlene, I know just how you feel. I am coming up on 4 weeks and and to me I still look like a freak. I decided if people didn't like the way I looked, they can just look the other way. I came home without any facial problems, but started having them the first weekend home. I was put on heavy steriods and have been off them 3 day now. SO, the face and neck are steriod puffy, which doesn't help. I got so depressed, I finally had to go get some meds to help and they have helped alot.
It's easy to say, don't let people get to you till it is you. I tell them that I am thankful I am alive and walking and talking. You can tell whne someone really wants to asked what happend, but don't know how. Hang in there.
Patty
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Hi Darlene: More of us are coming out of the woodwork ! Many people who didn't know about the AN thought I had a stroke !
I think I just got use to people staring. I too got back to work (after 8 weeks) & haven't looked back, it does get easier, & hopefully your paralysis will be temporary.
Always good thoughts, Nancy
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All,
Just wanted to share an observation about our culture and the "first look" that I have noticed. After my surgery and for the first nine months before I got any movement from the VII-XII transfer, I got the same looks as you all talk about. No one ever asked what was up, they just stared or gave me the "pity" look. After deploying to Iraq, the Iraqi people, without fail, immediately ask what happened. Not in a rude way, just curious, and everyone, for some reason, from the kids to the sheiks knows about the VII nerve (I didn't even know what it was when the doctors were explaining it to me). There also seems to be a lot of Bell's palsy here because everyone either had it or has a cousin that had it and I get countless remedies on how to fix it until I explain mine is permanent. I even had a ten minute discussion with a detainee that was headed to jail who took the time to share his palsy experience and offer a remedy. Its funny that even here, all the senior leaders and Soldiers I deal with in our Army refuse to make any comment but just give me strange looks.
But I will say that those family and friends that I dealt with routinely after the surgery "got over it" pretty quickly and its no big deal anymore. My older sons dealt with it better than anyone else and my youngest (3 now, 1 1/2 at the time of surgery) had no issues other than he liked to look at my scar (the big boo-boo).
I have made a note to myself to not be like the starers when I meet someone with a similar condition. I know I was like that before and now that I've been on the receiving end and can guess how they feel, I will try and be less insensitive.
Rick
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Thanks Rick for your thoughts ..... and special thanks for your service to our country! Prayers go out to you and your family, both here in the states and there with you.
Greg
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Oh, I hated the pity looks that came at first. My family was just so grateful that I was alive and well, that they didn't care that I looked funny. But I went to my nephew's b-day party at "Playworld" 4 weeks after surgery and it was haaaard. About 8 weeks post-surgery, I had to go to an Arkansas Ag Council meeting as a new board member. I knew some of the men there, most of them knew me by reputation but had never met me. It was so hard to greet new people without being able to smile at them. I felt very alone and wanted to cry right there in front of everybody. My hubby and I were out on a "date" (if you can call it that when you carry a baby with you!) in the spring and he told me that he was proud of me for going out in public instead of hiding at home. Ok. Have to admit, I didn't know whether to take that as a compliment or a slap in the face. LOL
I'm to the point now that most people don't realize that there's anything wrong with me. I look a little odd, but not obviously messed up. Certain friends and family members that hadn't seen me in a while made such a big deal out of how much better I'm looking now, that I have to wonder just how scary I was before. ;-)
vonda
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I've had a few people ask me if I've had a stroke too. Actually, Santa Claus, who was ringing a bell outside Walmart last Christmas came up to me and said "It looks like you've had a stroke". I was a little shocked at first, but just explained that I had a brain tumor and surgery and I think he was quite impressed that I was out doing my thing as if nothing had happened. I've also had a few people ask if I had Bell's Palsy.
I don't think I've ever noticed a look of pity, more just curiosity, and if people ask me what happened, I'm glad to tell them. I look at it as a chance to provide a little education on a very uncommon subject.
I think it's all in how you carry yourself - if you act like you are embarrassed to be seen, people will pick up on that and react accordingly. Yes, some people might appear shocked at first, but I'm sure once they realize that you are still the same person, they won't even think twice about it.
Lori
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Everyone,
Thank you very much for all your help, I feel much better after all your understanding and words of encouragement. I think sometimes it just takes time to adjust to dealing with a new situation. I had one not so great experience with a neighbor but I am sure the more I am out there I will be better able to cope with whatever comes my way. Having this AN has certainly been a journey of experiencing new things both good and not so great but either way I am so grateful to be here with my family that I have to learn to keep all these things in perspective. Thanks again.
Sincerely grateful,
Darlene
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Darlene,
I too had facial paralysis immediately after surgery. I too wanted to crawl under a rug and stay there. Actually I did for the first year. I don't recommend this! Time is your only answer and you will improve. It is slow but it does come and it is slower and usually incomplete for those who wake up with the paralysis as opposed to those who get the delayed palsy. My purpose of this post is to bring you good vibes and to let you know it does get better. I am living my life and actually interviewed for a job today! You may not recover to 100 percent but the emotional growth and character building that you get from dealing with this situation will more than make up for whatever you don't get back with your face. AND this is coming from what was at one time the most distraught person on earth.
Angie
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I'm in the same boat. Other than the fact that my eye is an issue for surfing I could care less though. The people that I care about don't give a damn what my face looks like. It may have been a surprise for them but they've gotten over it. I'm still the same person. I caught a little girl staring at my face the other day when Sue and I went shopping. I winked at her and gave her my single-sided smile....she smiled back. If anyone cares about how I look (negatively) ...I say to heck with them. If I let others opinions of my looks effect me its me that has a problem.
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Hugs, Darlene.
We have an elderly gentleman in our church who has total one sided facial paralysis. He is an amazing person - great sense of humor and is able to ignore any stares. When I was told that there was a chance I would be left with facial paralysis, I would think of him and his attitude to life. You WILL get through this...walk with your head held high and care not a whit about people's rudeness. Look at it as their problem, not yours.
Cecile
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Darlene,
Great posts from the others, and ditto ditto ditto!
It becomes more of a norm after a while. Those first couple of weeks/months are very awkward for sure. I too felt like hiding. That is the normal response!
It's called coping!
Hopefully you have seen some facial improvement already :) ???
I too felt this need to explain to people why my face was droopy and my eye was half stitched shut (facial nerve cut) after seeing people I knew after the surgery.
They were like "Oh you look great!" huh?
I guess, I still had the same personality and I smiled with my eye, and I was alive and being myself.
Keep truckn :)
Maureen
p.s.- 3 years post op brain surgery, and I go next week for my 12/7 surgery follow up (18 month follow up) , with hopefully plans for the next phase of my facial drama. I'll get to start a new topic!
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Just wanted to update, it has been almost 7 weeks and most of the time I totally forget about my face. I totally understand now how your own positive attitude has a great impact on how others view your difference. Since my original post, I have been out an about and other than some curious questions (everyone wants to know how you know you had a brain tumor, guess they are worried about it for themselves) and well wishes, my facial paralysis has not been a big thing. I went back to work and aside from slurring my words and my eye sometimes dripping from the drops it really has been a non issue.
To show how far I've come, the other day I saw an advertisement for a job that I thought I might want and without giving it another thought, called, sent my resume and got an interview. Of course as I got ready for the interview, I remembered my face and began to panic, even to the extent that I thought of calling and canceling. Well, I got tough and went and it was a great interview. I briefly explained I had, had surgery and my facial nerve was nicked and that I was waiting for it to recover. I was basically offered the job, but I have decided to turn it down ( too much office politics, that would make me unhappy) This AN has changed my perspective and despite it being a great opportunity, I don't want to waste my time in a negative environment. Thanks for all your words of wisdom, it really helps to get another viewpoint and to learn from others experience, Take care, Darlene
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Darlene~
Glad things are going well for you!! ;D
K
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Congrats on getting over another little hurdle, Darlene!
One thing I learned when applying for a job here in WA after we got settled was that there is no need to disclose personal health info. With my first job interview (home health nurse), I felt compelled to explain what happened to me. They didn't hire me. ( I didn't like the interview anyways :D, or how they ran things). Don't know if it was discriminatory or if I was overly qualified for what they were looking for. I have tons of home health experience and was floored when they sent me an email saying someone else got the position!
So with the second place, I didn't mention a thing. I was hired, and like this company so much better, anyway. I still am so conscious of my facial paralysis. I look like I have Bells Palsy, which is what people think.
Now that I work there, they know the gorey details!
Glad to see you are progressing :)
Maureen
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Darlene ~
Kudos to you for your fortitude and determination not to allow your fears or misgivings to conquer you! The successful job interview should cement your realization that your temporary facial paralysis is not a barrier to living a full, productive life because it does not define you. Now that you've come to understand this, you should continue to have better days. Well done!
Jim
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A little late to the game but....
Darlene, it looks like from your later posts that you are doing a fantastic job at adapting to your situation, be it ever improving.
I count myself fortunate in that I had plenty of practice with people staring at me for pretty much my adult life. When we lived in Korea, I stood out a lot. I'm about 5 to 6 inches taller than the average Korean guy and about 50 to 80 pounds heavier. While I don't usually think of myself as being gigantic but certainly felt so when walking down the street. Couple this with the fact that very few Korean men have beards and those that do are usually pretty old and it wasn't just my imagination that a LOT of people stared at me.
The other aspect of this extra attention was that small children and even some adult women, would come up to me and touch my beard. Since I have a very American sense of personal space in public spaces (big ole 3 foot circle around me please), this was a bit unsettling at first. I know they were not meaning to be rude and there was absolutely nothing negative or menacing in their actions and after a short time I got used to it. I really was a pretty unique sight moving through their presence, unique enough to provoke reactions. The usual reaction from the Korean men was to show me more deference than I was usually due. Respect for age is still a very huge part of their culture and since only old men grew beards most assumed (at least the ones I asked) that I was much older and therefore was due more respect. Not that I ever took advantage of this misconception.
I also seem to attract quite a bit of attention each year starting about Thanksgiving or so, especially if I happen to wear red garments. I will see small children tugging on their parents and can hear them ask, "Is that Santa Claus?" Like was suggested above, I have a canned spiel to offer during these times. I usually say, "Actually, I'm Santa's younger brother, but I tell him everything I see. I'm glad you're being good for your Mom (or Dad) today." That usually results in lots of grateful smiles from the parent.
When my face was in full side paralysis, I suppose that some folks stared at me, but I didn't really notice much of an increase...as I said, folks been staring at me my whole adult life. Only occasionally, while wearing the eye patch, did I ever let out a menacing "Arrrrgh, matey!" if I caught someone staring.
..take care.. tim b
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Thanks everyone! I went to therapist yesterday and he made me feel very hopeful. He believed I would make a full recovery! With the start of the school year, I am meeting a lot of people and it still makes me uncomfortable to talk when I am slurring words but overall I am doing my best to just move forward and continue to be grateful for all that I have.
Tim,
I loved your Santa reply!! You are one impressive person, I am always in awe of people who make the best of any situation. I have a resilient personality but I am not so quick on the uptake.
Thanks,
Darlene