Author Topic: words of advice please  (Read 5074 times)


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  • Facial paralysis- 5/7 nerve transfer
words of advice please
« on: October 08, 2015, 02:53:54 am »
Helloeveryone, my name is stephanie and im 24 years old. I had my an surgery 14 months ago and i thought it would get easier if time passes by but it doesnt.

When i was diagnosed, i was working on a yacht as a stewardess that was going to travel the world ( it has always been my dream) now thats not even possible because im not allowed to have nautical medical permission anymore. I was earning great money and looking forward to save up and finish my college degrees ( i did tourism). Obviously none of that happened. I lost my job, my dream, my boyfriend,money.

Now its been 14 months , and lifes gotten worse. I havent found a job since then ( even waitressing jobs dont accept me as for my facial issue), losing money, dont have studies and having another surgery in a few monthsbecause they saw i had venous malformations in my brain. I feel really down, dont have a reason to smile, i feel like life doesnt continue. I dont know where else to work where my facial issues wouldnt be a problem. I am thinking about studying cooking instead. At least i can be comfortable , all o have to do is make good food, i dont have to be in front of people.

5 months ago i had the masseter-facial nerve transfer which niow can help me make a grin, but i still feel like a complete alien as it didnt help at all with the droopiness in my face. I am very anti social now. i just go out when im with my real friends, and dont go to any parties where i dont know anyone. I have a really low self esteem, and with boys, i havent been with anyone since my last boyfriend and im afraid i wont have a relationship again. im 24, all my life ahead of me, but im scared it would be too long.

I  just wish that someday the day will come where i can look back and be happy again.  :( i dont know where to start again.


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Re: words of advice please
« Reply #1 on: October 08, 2015, 06:43:13 am »

I am SO, SO sorry that you have found yourself on this journey with the results you have. I know how you feel on so many levels. I have replied several times thinking you had a different graft surgery,,,, but I am hopeful that you will have more significant results with a little more time. I know just how hard waiting to see movement is and can only imagine the impact at 24,, I am considerably older. Being retired I haven't had to deal with getting in public if I don't want to either.

I see you are in Spain so not sure how your health system works,, but are you able to get a referral to a psychologist or psychiatrist in order to speak openly to a professional who may be able to help you get a better perspective on your future? There is hope,, always be hopeful,, that your facial tone will improve with a few more months. You may never be able to return to your dream job but I am SURE you will find something else that you can embrace with the same enjoyment once you heal more.

Please try to find a professional to speak with and maybe get a prescription for some anti depressants to make it through this admittedly very hard time. It is very hard for others to relate to the loss we feel when our looks have been  taken from us so quickly. It DOES change how we feel about ourselves and how others relate to us. We "see" it EVERY day. But you have to dig deep inside and find yourself,, you are still there,,, and there is life, a good, full life ahead.

After some more healing if you don't get the results you hope for, maybe you can look into another surgery to increase your ability to smile. There is one in particular, the gracilis free flap, that I have been told about to increase muscle movement and tone in the cheek area. Not sure they preform it over there, but you could check. But as I say,, I think in another 6 months, you will see even more healing yet. Please hang in there and know you are still the beautiful person you were before your surgery!

My thoughts and prayers go out to you sweetie! Surround yourself with those who love you and are positive and realize you are still beautiful,,   Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26


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Re: words of advice please
« Reply #2 on: December 07, 2015, 07:45:24 am »
Hi Stephanie,
I think I had the same 5/7 surgery and it took me a full year before it worked. I think if I would have followed the therapist instructions better it would have even been better. You really cant tell I have a problem immediately.
 I am not in the same situation as you since I have a daughter your age. I don't what I would tell her if she was in your situation.
I would probably tell her things will get better as they will. Please be patient.
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic

oh, now what

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Re: words of advice please
« Reply #3 on: December 12, 2015, 03:49:29 pm »
I am in the middle of Nancy Zieman's autobiography "Seams Unlikely." Nancy Zieman,  whose "Sewing with Nancy" is a long running program on public television, has struggled with facial paralysis since she was a toddler. Growing up with facial paralysis is a different animal than getting hit with it as an adult, but you may find her story interesting. I am interested in sewing, and her biography came out relatively close to the time I was diagnosed with my AN. I started reading it recently just for the perspective, in the event I must deal with it in the future --not an easy journey,  but hopefully strengthening. Prayers for healing, wisdom for your medical staff, and great employment
midfossa Wilkinson, Schwartz, Basta, Roberts @ House 4/13/2016, sticky 1.2 x 0.7 x 0.8, no pain ever, facial nerve preserved (camera cannot tell any difference) hearing not, age 64, walking 2 miles daily unless lightning, heat or ice--if you can, work up to walking 2 miles per day, the magic pill

Gloria Nailor

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Re: words of advice please
« Reply #4 on: April 25, 2016, 07:00:16 pm »
Oh Stephanie, I am so sad to read your post, but I know exactly how you feel. I felt like I would never be the same again, but after five years I finally feel like my old self. I was lucky and regained a partial smile. We show so much of our emotions with our smile. I will say that my emotional recovery was what took the longest to heal, once I accepted what I had been through then I seemed to move forward.  It's so easy to look at what we have lost and you certainly seemed to have lost a lot. I totally agree with another post here asking you to seek therapy and possibly an anti-depressant. I had a nervous breakdown after my diagnosis and depression made my recovery extended. I am hoping you have found work that you enjoy. I wrote a journal during my recovery, I found it very helpful. I have since written a book that includes my journal, I am hoping it can somehow help others who are going through  a hard time.  My book will hopefully be out in the next six months :) in it I share how God and my faith helped to get me through my problems with my acoustic. I can actually say there are days that I don't think about my tumor until late in the day, it is not all consuming now, hang in there, time did help me and hopefully it will help you.
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK


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Re: words of advice please
« Reply #5 on: April 25, 2016, 08:20:31 pm »
Stephanie.. I can appreciate how difficult this must be for young woman, especially with how today's society focuses on material looks.

I remember when I first came to grips that my facial nerve was first cut. I remember how heavy my face was, the difficulty eating, how I hated to laugh and smile. (Laugjing was the worst) My close friends said it was barely noticeable and the I saw girl in the gym that I would see every 1-2 years and it took her five seconds to ask me what happened to my face (actually "what the hell happened to me"). So clearly my friends were less than accurate in their assessment.   I remembered one time in a restaurant a waitress was treating me as if I had a learning disability.

In my job, I'm in sales, and my customers are CTOs of fortune 500 companies. While I would like to believe otherwise, looks are one factor in this career. I need people to see me and not perceive a disability.

 It was crazy hard.

But, I told myself I was not going to be stuck in the house. I was going to get out. Go to bars, concerts, travel.  I became more comfortable with the stares and awkward questions. My personality started to shine. Now I look in the mirror and I see the same amazing person that I knew before the surgery.

I guess my lesson, is what worked for me, is that I made sure to take my life back. Even though I hated my situation, was crazy depressed, I started doing everying I did prior to the surgery. It took 7-8 months but I started to become comfortable. Honestly, most people don't see my facial paralysis. The only difference, is my attitude. I still get the occasional stare sand to be honest it lets me tell my story of being am AN survivor. We are a rare and courageous group.

In the end, I hope your paralysis improves, but in my opinion you should not wait for improvement. The only one that can hold you back is yourself.  Honestly, as muck as I hated when I looked in the mirror. It's NOT what everyone else sees. I was much harder on my appearance.

Get out and experience life. Feel better about yourself and the jobs will come.  I know it's hard. If I ever looked at how much I lost, I would have never get out of bed. All I knew is that life could be much worse and I was going to take a small step forward every day.

By the way, I'm now forcing myself to like taking pictures. (This sucks)... But it's the next step to stop hiding.

Sorry.. Too long winded.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene