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..
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?
Yes2 )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
