Personal HFS History - Juliet Rhoden

I am a 43-year-old woman residing in Atlanta, Georgia (USA) with my two sons, 8 and 20 years old. Six years ago my Neurologist diagnosed me with HFS. This is my story. (This will be a bit lengthy, so I recommend that if you decide to read it, you may need to pull up a chair and get yourself a drink.)

My journey to this diagnosis was perhaps an uneventful one. I believe I first noticed the eye flutters at age 34. At first they were a mild annoyance which I attributed to being pregnant and stressed (unlike most of you it was not my doctor who suggested stress but myself). During one of my pre-natal visits my OB/GYN noticed the flutters and asked me what was going on. I joked about it and told him it was hormonal. He did not agree but let it go. As my pregnancy progressed the flutters around my eye grew in intensity.

After the birth of my son I noticed that there were tremors in my cheek and within a matter of perhaps weeks the corner of my mouth began to draw to the right. I was concerned but not consumed. The spasms were not always there. I had good days and bad. Good times and bad. I also had a new baby who needed all my attention.

My OB/GYN continued to comment about my face, even suggesting that I go see an Internist. It took me two years to make the appointment. My Internist is a wonderful man (I believe there is a counselor hidden inside). He allowed me to talk while he observed my face and took notes. He did all the necessary pressure tests, blood work, EKG, urine analysis and more. They all came back normal, as I told him they would. I suggested a diagnosis of stress to him and he told me it was more than that. He recommended a Neurologist, and before I left his office his nurse had make the appointment.

The Neurologist spent twenty minutes with me. I did my balancing act, reflex action and all those other psychomotor activities for him. He left me alone for five minutes and returned with a bound book in his hand and a diagnosis of HFS. He showed me the three sentences that talked about HFS. I was not prepared to read or comprehend any of it. It now had a name.

Perhaps he should have sent me home after his diagnosis because I was not prepared to listen or retain anything from that point on. I believe he sensed this and therefore instructed his nurse to copy the page from his volume. He did however suggest that I do my own research on the Internet.

I went home with these facts (1) I had HFS (was it Hemifacial Spasm or Hemi-facial Spasm I kept asking myself), (2) It was not life threatening (that's good, I was not prepared to go just yet, I have children at home), and (3) there is no cure (I will just live like the hunchback, in seclusion). On the drive home I decide not to tell any one about this new development. After all, what could I tell them. I knew almost nothing. All I had was a name and a twitching face.

The next day at work I get on the Internet. I typed in HFS, hemi-facial spasm, hemi, spasm, and facial. Some produced hits, others nothing. Here's the frustrating part. I found two paragraphs on the topic. That's right, two paragraphs. These paragraphs did not talk about treatment or cause. They were perhaps written by someone with a medical degree who probably thought that no one would ever read it. I could have cried.

The doctor's nurse called me later that day and told me she had made an appointment for an MRI for the following week. I kept the appointment. The results showed no abnormalities. An appointment was made for another test (the name eludes me) that entailed laying in a dark room with wires attached all over my face. These wires extended from my forehead, temples, cheeks to my neck. I do not recall much about this test, but I do remember that each time I had a spasm an alarm went off. The test took approximately an hour.

After all the results were back I met with my Neurologist again. He offered me three methods of treatment, in this order - Medication, Botox® and surgery. Then he discussed them in this order. Surgery was risk, he said, because we are talking about the brain. There is also no guarantee that they can fix the problem, (and here is the tricky part) he made it sound as if there was less than a 50% chance of success if I had surgery and a higher chance that I might die. The next treatment option he discussed was Botox®. These were injections, he stated, that would deaden the nerves and stop the spasms. He was vague on this also. He mentioned that he knew of three doctors in the area who administered Botox®. A plastic surgeon, an Opthomologist and a Neurologist. He did not do them. The third option, the one he was more enthusiastic about, was medication. He suggested we begin with this treatment method, trying a few drugs if necessary to see which worked for me. We started with Tegretol.

At this point I must confess a few things about myself. I am terrible at keeping schedules and following routines. I am a spontaneous person. I am always on the go, can't keep still. I do not believe in drug therapy for myself. The drugs were doomed right from the start. I started the Tegretol and my family reported the following (1) I was moody, from one day to the next or one-hour to the next they could not predict my mood (2) I was irritable, snapped at everyone and everything, and (3) I looked tired. All this and the spasms were still there.

Truth or dare. I did not always take my medication on time.

I was now looking hideous during spasms. I started to avoid appearing in pictures. I tried covering my face during spasms. People started looking at me. People started asking me questions like - Are you feeling OK? At first I would try to smile and assure them that I was fine, but when I smiled the spasms got worse. I changed that strategy and decided to just say NO. At a party, during a game of guess what I am doing (can't remember the name) one guy (a total stranger) kept asking me why I was making those faces. I was so hurt and embarrassed. I decided there and then that I would avoid parties where the majority of the guests were strangers to me.

After six months of driving everyone crazy, I quit cold turkey, no more drugs. My doctor was not pleased. He suggested we try another drug, I said "HELL No". Show me the needle.

I chose the plastic surgeon. I did not like him on the first, second or third visit. He seemed more concerned about my insurance coverage. My insurance company rejected his first request for payment, so I had my office administrator call them and explain the nature of my treatment. They informed us that it was the doctor's responsibility to use the correct code to ensure payment. I relayed this message and told them to resubmit their bill. Now he was annoyed because they reimbursed him only a nominal amount. We call the insurance company again and they inform us that this was between them and the doctor, because as a member of their group, he had agreed to their terms. They worked it out some how because I kept going to him for over 4 years. He also grew on me.

My first Botox® experience. I was the plastic surgeon's first HFS patient. He didn't even know what HFS was. He took pictures of my face, observed my spasms while I talked and smiled, used his pen to draw lines on my face and made notes on his note pad. Then the hard part. The nurse brings in the needle and small bottles of a clear liquid. He tells me where he will be administering the injections but I have left the room. The nurse is holding my hand and I am squeezing for dear life. He injects my eyebrow, the outer corner of my eye, my cheek, the corner of my nose. GOD, they hurt. The pain from the insertion of the needle was slight. It was the stinging from the insertion of the medicine that was almost unbearable. I recall him asking if I needed a break and I said no, let's get it over with. I think I fractured the nurse’s fingers.

The doctor explained that he did not inject my eyelid because that would impair the function. He also did not inject my mouth. He wanted to see me in two weeks to evaluate my progress and possibly administer more injections. In all he had injected me 13 times. Before you gasp, by the time I was through with Botox® I would be up to 28 injections.

My face was sore that night. There was no overall swelling. I could however see a slight swelling in the areas where he had inserted the needle. I avoided touching my face until the next day, and when I did I could feel the medicine just below the surface of my skin, just sloshing around.

It was approximately 5 days before I noticed that my eye and cheek were calm. There was still movement at the corner of my mouth. The spasms it appeared were below the skin. I could feel them, but barely notice them except for the mouth movement. Great I thought. This works for me.

At my next visit the doctor admires his work and decides to inject my upper lip and the corner of my mouth. I say let's go for it.

I guess I noticed the change in my appearance. But it was not until my brother saw me two months after my Botox® appointment that I realized how drastically my face had changed. He was shocked to see how droopy the right side of my face was. He ordered me to cease the Botox® injections (he is number four on the food chain but believes he is the first born). I guess that was my first glimpse of how others perceived me. I began to pay closer attention to myself and the reaction of others.

The children in my neighborhood began to stare. My younger thought I was always angry. People didn't know what to say, what to ask or how I felt. I didn't want to talk about it. Botox® was worse than the spasms.

I get my injections every three months. My doctor continues to congratulate himself. He takes more pictures. His measure of success is his ability to control the spasms. This he has accomplished. He is not concerned about my "stroke" appearance. After one year of looking like this I finally get the courage to ask him to inject my non-HFS side. He says no and cites the "do no harm oath." He does however suggest that I go see a therapist. He explains that he can only inject my good side if a counselor says my appearance is causing me psychological distress. I am a counselor in training and am outraged by this suggestion. Perhaps I do need to see a counselor, I am in a depressed state.

I accept very few invitations. I give very few parties now. I am annoyed when people stare. I am sometimes rude to those who unashamedly stare, even when I stare back. I no longer care if others think I am angry or not OK. I hide behind my appearance to avoid contact with people. I am reaching the end of my rope.

After two years the Botox® is lasting for shorter periods of time. The doctor wants me to come back in less than 3 months but I refuse. He talks about switching to Botox® type B but decides to inject more of the current drug into each site. I have also told him that I do not want any more injections below my cheek.

This is what I look like. The entire right side of my face has drooped. My eyebrow however is arched. It is distinctly higher than the left brow. My eyelid is weak and does not open fully. It appears that I have a weak eye (dreamy eye someone said). My eye is often dry, requiring constant moisturizing. The corner of my mouth is turned down. My cheek has sagged. When I speak or smile only the left side of my face moves. When I smile I look like Popeye. This is me.

Although I have told my doctor to cease the injections around my mouth, a couple of times he has defied me. I dread my visits.

I have been taking Botox® for 4 years and I don't believe I can live like this for the rest of my life.

Today I am in a depressed state. I am sad and defeated. I am past due for my Botox®. I should call an make an appointment. I used to look forward to them, now I hate the thought of going. I make the appointment, but I think I will try the Internet again.

Google is a good search engine. I have been using this medium to research my papers for school. Perhaps I will go to Google and type in "Hemifacial Spasm". What do I have to loose.

My goodness, over 5,600 hits on Hemifacial Spasm. Where do I begin?

There's a support group out there. My doctors told me that HFS is rare. How many people could possibly be in this group? Can't be many.

My goodness, I have been on this site for over 8 hours. This is amazing. There is so much information. Wow! There are actually people who have had surgery who have not died and others who are spasm free. This is too good to be true.

I read everything but I hold on to key words and phrases (1) the cause of HFS, (2) MVD, (3) successful MVDs, (4) doctors who do MVD, (5) UPMC and Allegheny General in Pittsburgh, (6) experienced and caring doctors, (7) 10 days in Pittsburgh. I have never been part of a support group, but because I am a counselor in training I have come to learn the importance of support groups. My printer is working overtime. I am printing every page because I am afraid that I will never find this site again. I also write down the site address because I just know that all this information will disappear. All this information is going home with me so that I can sit in the middle of my bed and read every word that has been written.

Someone's having surgery in the next few days. My God, Is this really true? Another living, breathing soul who has HFS. My hands are shaking. Perhaps this is my answer. I am excited and scared. My heart is racing, but no spasms. Maybe it knows that this is the beginning of the end. Ha Ha. I am no longer depressed. I feel like I have won a large lottery, like all my stresses have been lifted off me, the pressure in my head is no longer there and I am breathing regularly.

"Persons receiving Botox® must wait 9 to 12 months before undergoing MVD surgery." I read this on the HFSA site and stop in my tracks. This is my answer. I call my plastic surgeon and cancel my Botox® appointment. Yes, the decision has been made for me, no more needles.

Before I go home I complete a member profile for this Hemifacial Spasm Association (HFSA) support group.

Permission granted the HFSA to post Personal HFS History on website.
Juliet Rhoden, October 17, 2003

 

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