Facilities

MY FACE / Facial Paralysis Support Network

"Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one'"- C.S. Lewis

Testimonials - Experiences, Tips & Support

An introduction to the testimonials page is for patients to share their EXPERIENCES. As a patient in recovery, one of the most powerful tools in my healing is writing. I'm very lucky to have connected with someone who I could share this with, who could understand it, and, somehow putting it into words has made it easier to sort through and process.

In writing regularly, I found myself making notes about my face: reflecting on a day where it felt particularly good (why), observing changes and reactions to treatments and all the time discovering new sensations, not only was sharing this helpful, but also informs my recovery. Additionally started to record emotional reactions- a day of insensitivity, a day of frustration of anger, a day when I cant bear to look in the mirror...

If you wish to add to these, and I hope you do, please e-mail the contacts and send your text and a photo (optional / I know how we love those).

About ME: Lucia R.- My 29th Birthday Gift

About My Face- My facial paralysis was / is caused by the surgical excision of a vestibular Schwannoma aka acoustic neuroma, aka brain tumor) which had been growing, beneath the facial nerve for ten years or so. How I got to that place, that diagnosis, I shall leave for last, as it is the nuanced symptoms / treatments and the emotions associated with suffering from these relatively rare conditions that bind us most intimately...

It was after 6 days in ICU that I was moved to the regular unit and ambling to the bathroom I saw it- me, what used to be me, some scary clown from a horror film version of me. It was immobile, I was immobile, and then, then the hysteria set in”…my life was over…nobler to have died on the table than to face the world like this…sobs...!!! ” And my mother, kind hearted lying soul said “You’re fine… You look fine… it will be fine!!” And a nurse shut the door on me, alone, and she berated me, “Look around, there are people dying all around you and you’re crying about your face!” I felt guilty for a nano second, then I was sure those souls were enjoying a better fate than I, half their age, having to live the rest of my life like this! I was ambivalent, on some level she was right but I knew I was entitled to feel bad, sad, mad…

After the surgery, I needed to trust that the physician I had so carefully chosen would refer me to the appropriate after care, but, frustratingly, that was not the case. On my first visit to the referred physical therapy dept., something in my gut told me that my experience was somehow not scientifically sound, but my mother dismissed me, and I thought maybe she was right, I imagined they had referred dozens in the past. I trusted- big mistake. I allowed them to sell me on some “nerve stimulating electrical machine."

On a family outing in PR, my relative, a physical therapist skilled in facial therapy, asked me about the machine, commenting that it was meant for larger nerves. Then she asked me a battery of questions about different therapies, none of which had been tried or used on me. I was in a state of utter rage and I called this reputable hospital’s PT department, demanding to speak to the head, I explained to her my situation, wanting to know why the PTs in PR seem to know more and have more ideas than the woman I was currently seeing and she said (words that get burned into your memory) “I’m sorry about your condition and you have to be prepared to accept that your condition will not improve. The research on the facial nerve is inconclusive and right now we are giving you the best possible treatment available…”- the device. Furthermore, she implied, “I don’t know what kinds of treatments they have in PR but we are using accepted science.” I choked up and rudely put her off, she could hear it in my voice and apologized, and within a few minutes all my hope just melted away. I was inconsolable, only the presence of family and their reassurance of hope calmed me. But when I returned to Boston, I was on a war path.

I confirmed with the manufacturer of the machine, that it should not be used on the facial nerve and knew of the newest studies showing that in fact its detrimental. I went to see the PT assigned to me at our frequent and unproductive appointments and I handed her the machine, told her what I knew, and asked her had she ever dealt with a facial paralysis patient before, and she said no, and I reigned in my anger and told her I wouldn’t be needing her services.

In the next couple of days, in the waiting room for an appointment, determined to find answers, a few clicks from this Generation Xer’s finger and there it was, one of a fistful of its kind, the Facial Nerve Center at the MA Eye & Ear Institute, and as luck would have it, right her in MA. I contacted them right away. Met the supportive staff which gave me the one thing everyone else failed to give me (no guarantees of course) but they gave me hope, hope, HOPE and even though the magical healing powers of hope are well-documented, many of the care-givers I encountered refused to give it. I fou Lucia after w/ time

nd a staff who understood and could offer insight into the process, the mysterious activity of my face helped to teach me to control my face and its tics…and then later were able to offer minor adjustments to enhance symmetry and most importantly, disperse some of these strange “pains.”

It’s been 2 ½ years now and I’m still in recovery, probably always will be. As many might imagine, I’ve had a lot of trouble picking up the pieces of my shattered self-esteem. Though I am better, look better, everyone has forgotten all about it, but it’s all a part of me. Sometimes I wake up and see that same monster in the hospital; I avoid mirrors, preferring to see my reflection from a dark panel of glass. I do my messages incessantly, to the point that people are now starting to wonder “who is this weird chic with her fingers in her mouth all the time.” A good day is when I realize that several hours have passed and I haven’t thought about my face, but it’s My FACE, the only one I got and I need to learn to love it again.

The Path to Paralysis, The Conclusion

Friends told me “how good the thirties are, you find yourself, you know who you are…” So, just after celebrating my 29th year, I was off to Guatemala for the summer, to embrace a new adventure, so you can imagine my dismay when I heard about my "lesion."It was a difficult surgery, 12 hours, the usual day in ICU, turned into six for me. Fortunately there was no room in the regular ICU, so I was in the ICU Burn Unit, thankfully, because there were no mirrors- had I seen my image, I’m not sure I would have recovered, and apparently I had survived some touch and go moments. I initially woke up one morning as two interns were hovering over mediscussing my “severe facial droop” and had it not been for the catheter I might have lunged at them, but instead I shouted, “I’m not dead yet” and ordered them out.

The immediate recovery was arduous, relying on your mother, weight gain, pain, flashes and light-headedness. Then, just as charming as the facial paralysis, there is the awful hearing loss. My distorted perception of sound, and the continuous static, or din, that I hear when more that a couple of people are speaking, leaves me with perpetual anxiety. For me, as a brain tumor patient, I loathe that feeling in the affected side of my head. I feel like a half-gutted grapefruit with a paper towel stuffed in a half. I’m healing and going on as best I can, asking for help when I need it and hoping we can help each other. My notion of my life was decimated and for a long time, I thought it more glamorous to have died in dignity. I know better now, but it was no short road, 2 yrs. just to know what you can expect and science has helped with much of the rest, but like it or not, this is now a part of the essential "me."

Stephanie- loss becomes truth

First I want to thank everyone for sharing their stories, it's a privilege and it’s not easy. My mind is going in a million directions. I'm not sure where to start. I am 35 years old and mother of one daughter who is now 4.5. I am truly blessed. I was diagnosed with an acoustic neuroma on my left side 4.5cm in July 2004. That is when this journey began. My husband has been amazing thru this entire process. He never made me feel I was "damaged goods" I did that enough on my own.When I did talk to people I kept saying, "I’m going to be fine". I truly felt I have never been more alone in my life. I felt I couldn't tell anyone what I was really thinking, how I was really feeling. I felt so much guilt about what I was doing to my husband and daughter , my family and friends, that I couldn't even entertain the thought that I wouldn't be around, that I would leave my husband to raise my 1yr old daughter alone, that she would never know her mother who loved her more than she ever thought possible.amazing man.
There is no way to describe what happened to my family, the devastation was so thick you could physically see it when you looked at us.I thought every day about writing letters, especially ones my daughter could read as she grew up if I wasn't there, but I could not bring myself to write them. I never did. I did do a video with her, playing with her, something she could watch to remember what I looked like and see how much I loved her. So I was diagnosed in July, decided on Dr. M in August and had to wait 5 weeks for my surgery date. I have a few very treasured friends. They all tried to be a support to me this time but I withdrew emotionally,I still have a really hard time talking to people about it, people say that I'm so strong and positive and it makes me feel like an imposter some times.
So can someone be alone and surrounded by love and support at the same time? If it is possible that is my story. So I had the surgery Sept 27, 2004. It took 18 hrs to remove almost the entire tumor. It was decided to leave a little tiny piece because it was so tightly wound around the facial nerve (like wet tissue paper) that my surgeon was pretty sure he would sever my facial nerve if he took anymore. So there I was with complete paralysis and a little piece left for a souvenir. I was deaf, deformed and feeling like I was hit by the biggest most destructive vehicle you can imagine. I still find it so amazing that even after having a “brain tumor” and “brain surgery” the most powerful impact it has is what it does to our face. I don’t remember the first time I saw myself in the mirror because I think it was a really long time before I really looked. I would catch a glimpse here and there but I would not look at myself straight on in the mirror.
So we were sent home after 5 days and my poor husband was expected to be my nurse, doctor and maid. He was handed a big bag of medication and instructions and God bless him never looked as terrified as I now know he was.

My biggest fear in coming home was how my 1yr old daughter would react. The moment before I saw my daughter, the anticipation was almost more than I could bare but the only person she saw was me, her mommy. What I relief, I can barely think of it now without wanting to cry. I went back to work after 3 months, which was very hard but ultimately good for me. I work with teenagers and I was nervous about seeing them again. The kids I worked with were wonderful.
So here I am, 4 years later and some pretty good facial regeneration. I’m still deaf, no tears, weight in my eye, lid stitched on the side, titanium in my head but other than that jfabulous. Still good days and bad but trying to take one day at a time. This has been an indescribable journey, some things I would never change if I could and some I would most definitely change. Life is funny that way, you have everything all planned out and then you realize it's really not up to you, your only in control of how you choose to handle the cards dealt to you.

My first incidence of facial paralysis occurred when I was in 11^th grade in 1979. I remember how embarrassed I was. High School was hard enough socially without facial paralysis. I barely spoke to anyone. My doctor at the time thought I had Bell’s Palsy. He prescribed steroids which added acne to my paralyzed face! After about 2 months my paralysis subsided. I thought that was the end of it.

From 1993-1996 I began to contract ear infections on a regular basis. I began to have problems with my employer due to absenteeism for my illnesses and appointments. During this time my own doctor had a medical leave in the middle of my recurring ear infections. When he returned and noted that I was still having them he referred me to an ENT specialist for exploratory surgery. During this surgery the doctor discovered the tumor on facial nerve. I remember him telling me as I awoke from anesthesia that he was unable to remove the gelatinous mass and that I had a dime sized area missing from the myelin sheath of my 7^th nerve. I soon realized that I had a slight drooping of my right eye brow and an occasion twitch of my right eye.

I was then referred to the head and neck clinic at Brigham and Women’s hospital where a team of 13 doctors reviewed my case and suggested that stereotactic radiation would be the best manner in which to treat and shrink the tumor (seventh nerve schwannoma). I was told I was too young to risk possible permanent damage and facial paralysis by surgical removal. I was fitted for head gear that would fit my mouth and head so that it could be screwed into the table so that I did not accidentally move as the radiation was aimed at my head. On the fourth day of being strapped to the table with the ominous machine on my head, I had complete facial paralysis on the right side of my face. (At the time I was a preschool teacher and was horrified that I might scare the children in my class.) The next day when I saw the doctor, he assured me it was due to swelling and that it was only temporary. He prescribed steroids to help reduce the swelling and I was to take them regularly for several months. Unfortunately he was wrong. The steroids caused acne, moodiness, weight gain, depression and almost cost me my marriage but did not offer any relief from the paralysis. After that day he never saw me again, he only sent his associates to my appointments.

I saw an acupuncturist, took holistic herbs, went to an archaic form of physical therapy that involved electro-stimulation (this was painful and I do not recommend anyone do this). A year and a half later I regained minimal movement but at least had regained muscle tone so my cheek did not sag and I was back to the occasional eye twitch. I was told the tumor was shrinking. I began to be my usual self. I allowed myself to be photographed. I attended social engagements and my life seemed “normal”. On rare occasion I would get an ear infection would cause some weakness on the right side of my face.

In 2002 I had what seemed to be an ear infection that would not go away after 3 weeks of antibiotics. My facial paralysis was getting worse by the day. My primary care referred me for further testing and a referral to Brigham and Women’s hospital. I ended up seeing one of the original 13 doctors from the Head and Neck Clinic. He reviewed my case and determined that surgery would be a great option to remove the tumor. He said depending upon what they encountered during surgery that it could potentially turn into brain surgery. We set a date to have the procedure done in a month. Before we could have the surgery he broke his wrist in a bike accident. He wanted to reschedule my appointment for 6 weeks when he would be fully healed. I completely lost confidence in his ability to perform the surgery and opted to search for a different surgeon who had not had a history of broken wrists. I researched via the internet and found the facial paralysis center at Mass Eye and Ear. I had my surgery on 01/02/03. The hospital staff were all kind and wonderful. I healed miraculously after a 13 hour brain surgery, nerve resection and tumor removal, I left the hospital in 2 days and was back to work within 2 weeks and back to yoga by the 3^rd week. I attribute this to prayer and surgery preparation from “Prepare for Surgery Heal Faster” by Peggy Huddleston and lots of visualization and relaxation techniques. Post surgery I found that although I did not have all of the side affects associated with brain surgery I did still have facial paralysis. I was told to wait a year and then start physical therapy. In the mean time I could have a platinum eye weight and a slight brow lift. The eye weight was a life saver!

Years later I returned regarding a dent behind my ear and was told that I should start physical therapy again. I was not mentally prepared for this. I had already decided to accept my appearance and was disappointed that I was being told I needed to more than I already had. I was tired of allowing my paralysis to run my life and my moods. I thought I was over that. I also argued that I was way past the 2 year post surgery period when they said I could get results. I cried during my physical therapy appointment and could not finish the exercises. I asked to be referred for psychological counseling and ws told that a support group would be formed. Dr. Hadlock referred me to a doctor from MGH. It took 3 months to get an appointment. I met with the psychological cognitive behavior therapy doctor weekly. I became ready to start the exercises and also decided to give in and attempt the Botox that I had resisted in the past. Botox rocks!!! Within weeks of receiving the Botox I began to see more and more results from my physical therapy. I became more motivated to do the exercises and massages. Soon after the support group began to meet. It has been a true God-send. It is so comforting and informative to be within a group of people who really get you.

Jonie-Devoted Member & friend
I have a long way to go but I am shocked at how far I have come. After having paralysis for such a long time I did not know that it was possible to get any tone in my face without a muscle graft but I have. I also was beginning to thing I would never feel “normal” again but I can sit within the support group and feel more normal than I have before. Thank you Lucia and Stephanie you are blessings!