ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mimoore on October 06, 2008, 06:11:17 pm
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My four month update ~ Michelle.
My intention is not to make a scary situation worse for anyone but hope that I can support others going through the same thing or help those preparing for surgery. Each situation is unique and it is your own. I want to share my experience with you in hopes that I help or touch someone going through this (whether it is you or someone you love). I thought I was fully prepared for surgery, I threw myself into researching the possible Meniginoma or Acoustic Neuroma that the neurologist thought I may have. I felt confident in my surgeons skills. He informed me of all the risks associated with this type of surgery but it wasn't going to happen to me. I have a great life, I am young, strong, and vibrant, I have an incredible husband, great children, a wonderful family, and a great career. I had my whole life ahead of me. I was going to have this tumour removed and get on with my life. And then it happened!
June 4th, 2008.
Once moved from ICU after a 12-hour surgery I woke up and my husband calmly said, I love you, your alive, your face is paralyzed and they had to leave some tumour behind. I remember thinking, well that wasn't supposed to happen. I was too weak to care about anything at that point, and I just kept throwing up. Days turned into weeks and weeks into months¦I was completely devastated. Wondering why this happened to me? As I began to feel stronger (slowly) and realized I was heading down a slippery slope, I was completely depressed. I started taking an anti-depressant and slowly started to feel better. Why was I not just happy to be alive? I was reminded of that daily. "Your nerve is intact" said my surgeon. Your nerve will regenerate 1 cm per month, it could take a year or more WHAT??? I am not a very patient person, I wanted to be better now and it was not happening fast enough for me. I found this great forum and realized I was not alone. Apparently this rare tumour has affected more than just me. People experiencing the same feelings, someone to understand, what more could I ask for?
With the great support I have received here I started to feel at peace IF my facial nerve did not regenerate I have options. As I felt better (a little movement helped me to cope), I went back to work part-time as a kindergarten teacher. It really was the best thing for me, gave me a reason to get up in the morning and get on with my life. If my doctor was right, things would improve SLOWLY. I needed to visualize and believe it will happen.
Practice patience (oh I hate that word now). It is a test. Was someone trying to teach me a lesson? Okay I get it I now, I needed to slow down and enjoy life. Anyway this has not been an easy journey for me, it wasn't supposed to happen to me (but why not me?). Life goes on whether you want it to or not. I choose to live it with or without facial paralysis.
I am a work in progress I am trying to not be so hard on myself.
Some things that have helped me cope.
* Loving support from family and friends.
* Reaching out to others in the same situation.
* Pushing myself so I did not isolate myself (gets easier with time).
* Say positive things to myself everyday. Remind myself things I am thankful for.
* I have used tranquil eye foam (unlined) in my sunglasses (it is the only eye relief that works for me) See my other post Eye Wear for photos. Oh and a steamy hot bath. Lots and lots of lube and drops. I am looking into an internal eyelid weight.
* Clear goggles for the shower.
*·Harley goggles for on the boat.
* A knee high filled with white rice (tied at the end). Heat in microwave for 50 seconds and apply to face. Then massage lightly in circular motion. Or a heating pad.
*Paper tape and junior eye bandages at night.
If you have any questions PM me and I will try to help.... no need to reinvent the wheel.. ;D
Symptoms to date October 4, 2008:
1)7th CN shut down:
Facial paralysis (slight movement near lip and nose).
Eye: no tears, slight blink, no close (when exert energy some flow).
Ear: no hearing, constant tinnitus, balance issues.
Nose: dry no nasal flow (when exert energy some flow).
At times site throbbing and down base of skull (was hard and puffy at top of incision and with massage puffiness went down and intense pain subsided).
2)Jaw clicks, when finger in ear makes it easy to feel.
3) Hip sore and side numb.
4) After three weeks post op, warm rushing, tingling, from in front of ear across cheek to lips most feeling has returned (numbness at side of nose and nose itself).
5) Shoulder and neck pain experienced prior to surgery has vanished.
Questions I had for my doctor:
1) Able to clearly identify 7th CN?
Yes
2 )Prediction or experience in nerve recovery based on the nerve integrity during surgery. My understanding is that not all fibres are needed for movement. How damaged was the 7th, including axon? Is it possible to know? In my operative summary report you said; [try to preserve the 7th nerve as best as possible? However there was not one nice bundle of 7th nerve. Stimulated at 1.0 mA. We spent a couple of hours in this area and we were getting diminishing returns. Nerve fibres splayed widely. I feel confident that you will regain 50-75% function back.
3 )EMG showed nothing at 6 weeks post op, is this predictive of nerve recovery? It is only a snap shot in time.
4) Correlation between itchy scalp and nerve regeneration? Yes Other signs? Tingling, zapping, twitching.
5 )Nerve graft (which do you recommend)? When? Where? Do any of them restore eye function?
Lets wait and go there IF we need to.
6)Post op MRI showed 1 cm residual rind? Regrowth? Plan of action?
We can talk of GK or surgery IF needed.
7)Premed for dental work? Seek your advice before medical procedures?
Not necessary, just inform them of past medical history.
8)Alter my life in anyway? Eg exercise etc..
I would like to see you do some real heart pumping aerobics.
9)Next steps - Any suggestions / recommendations that I could be implementing that would enhance recovery?
Eat well, exercise, rest and listen to your body.
Thank you everyone for your continued support.
Hope this helps take care.
Hugs Michelle ;D
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Hi Michelle. Thanks so much for posting-especially the pictures. You are very courageous! Be well, Karen
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Michelle,
That is quite a post. I guess you could say that you are not on the fast track recovery plan. As you know, they are others on the forum in the slow boat with you, and we will be here with you as long as it takes. I just saw a new post in JeanLea's topic, where she shows her progress after three years. There is always inspiration here. I get the feeling that even though you have been dealt a rough hand, you are coming to terms with it, and are finding the courage to keep going forward. I think it is great that you are back in the classroom, and I bet the kids think so too.
More power to you.
Steve
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Hi Michelle, i remember my consultant saying your face may take 6 months - 1 year to recover am like WHAT lol, but i am now coming up for 2 years post op. and i am just startimg to see results, my AN was large so i think the facial nerve took a lot of damage, dont give up ,we all heal at different rates. Loved your story and pic. take carex
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Your story is certainly an inspiring one for those dealing with facial paralysis on how ones attitude can help and your attitude certainly is up there in being positive. I'm sure it's hard though and you most certainly need encouragement more than most.
Your photos are wonderful thanks for sharing and is that your tat or husband? Anyway I love that!
Your posting your questions and response will be of value to others thanks for doing this.
The "waiting game" has to be the hardest but if all doesn't work out at least you know, thanks to others before you, there are other surgeries to help you. At least there is help out there.
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Thanks Gang, It is my daughter's tattoo. I am the she if you didn't figure that out. I was flattered but in shock. Michellel
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Michelle,
Thanks for your story. You really have a great attitude for someone who has been through so much. I'm sure your story will be an inspiration to many. I had a really good outcome and initially had a minor problem with my eye and my balance has been my biggest issue. Believe me when I say I am thankful, although I tried to be prepared for whatever came. When I read posts like yours I realize all over again just how lucky I have been in my own recovery and to know people like you.
Wendy
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I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do. ~ Edward Everett Hale
Michelle
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Great quote! ;)
K
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Hi Michelle-
I too was in Mexico on vaca.my ear was ringing the whole time 7 i was putiing off going to er till i was sure it was not going away.On my birthday 5/6/08 i got MRI that showed 2cm
AN.Happy Birthday to me!I am really glad it was discovered but not w/ any help from my Primary Care Physician who told me i had meniers & tinnitus was just part of it
I want to go back to Mexico everyday & drink Dosakies at 10 am!
I think back i even went skiing last winter.Now i have all i can do to make it down the little hill walking next to my house w/ sneakers on.
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Michelle:
Thanks for the extensive and informative post, including the photos, which really do say more than words.
Obviously, you've had to deal with disappointment and frustration but have developed a coping mechanism that allows you to help others who may be in your situation (enduring facial paralysis) or are concerned about how they might cope with it, should this occur, post-op.
I and many others appreciate your leadership in honestly stating your experience, including the fears, resentments and coping methods you've learned to use. I applaud your decision to resume teaching as this is a very necessary profession and I'm sure whatever healing benefit you may receive from teaching your young students, also benefits them. :)
I hope and will pray for your continued healing and for facial mobility to return.
Jim
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Michelle,
Thanks for the post, it is incredibly helpful and informative. Your strength and determination are what will get you through. And by the way, even with half a smile, you are still beautiful.
Marci
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Great post. Thank you. Now I need help. I want to post a couple of pics and I tried but it didn't work?!?!
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Angie upload your photos onto photobucket and then copy the area that says direct link and then click on insert image above (drag your mouse over and you will see which one) and then paste your link in between. Does that make sense? Hey I had brain surgery and I am using that excuse for as long as I can. hehehe
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Okay. I uploaded photos on photobucket. I see direct link option.....now what do I do with it? Yes I am dumb with this type of thing> totally clueless.
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highlight it and copy it and then go to you new topic scroll over the icons above and find insert image and then paste your direct link that you copied into the middle (that will make more sense once you click on insert image) Magically it will appear.
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hey Michelle,
Thanks for sharing your photos, feelings, fears and findings (that's a lot of "f's" from someone who can't make the sound properly at the moment!).
I hope that one day (in the not too distant future) you can look back on this and find that you have recovered from most if not all of these challenges.
Trish
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Right back at yah Trish. Great things are coming our way. It is almost Thanksgiving here in Canada and I have lots to be thankful for. Happy Thanksgiving Canadian friends.
Michelle
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Yes Michelle we really do have a lot to be thankful for. I'll be in NYC hopefully meeting up with Wendy and Jersey Girl. I'm celebrating and cooking family next weekend for all of men in my life ;) I love Thanksgiving....no pressure.
Michelle you look gorgeous in your pictures. Thanks for sharing.
Anne Marie
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Michelle,
I really liked your post. Your pictures reminded me of where my face was after a few months. Your post should help other people as they are going through this process. I'm glad that you were able to accept what happened and are happy and working again. I do think working, if possible, really helps in the long, long process of healing.
Jean
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Michelle, Your 4 mo update sounds very familiar to mine...over four years ago. I hate the word Patience too but in looking back you will be able to see your progress. Ask your eye doc about a punctual plug, it has helped me and I use Restasis. I went from lacrilube all day everyday to never using it again. :)
Stay strong.............
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Michelle, what do I say? :) thank you SO SO very much for sharing all that you have shared. A shining star to share such details with all for others to learn and grow... I commend you!
You know you got the huggles... and a few extra thrown in for good measure.
Rawk on! :)
Phyl