Botox® Experiences - Missy Dean

I noticed a slight twitch in my right eye beginning in January 2004 at the age of 39. I tried really hard to ignore it and since it was intermittent, I could turn my head and hide it from most people. My husband would occasionally give me an “Aargh, what’s wrong with ye eye matey”. When my co-workers starting asking what was wrong with my eye, I knew I had to get some help.

I discussed the twitching with my Optometrist during a normal eye exam. The twitching never happened while I was being examined so his recommendation was to: 1. Take an antihistamine and 2. Stop rubbing your eyes (I wear contacts so I never rub my eyes). After a few more months of increases in the number of twitches each day, I decided to make an appointment with my family doctor.

My GP prescribed Primidone (generic for Mysoline) and, in December 2004, I started with one 250-mg. pill per day . The side effects of one 250-mg pill put me down and out for 2 days (nauseous, headache, no energy) however, the twitching did stop. After consulting with my doctor, he recommended cutting the pills into ¼’s. This got me back to a twitch free life in which I could function again. At the time, making the symptom (twitching) go away was more important and less expensive than finding the cause of the twitching. I never in my wildest dreams could have imagined how those little annoying twitches would impact my quality of life!

Over the course of the next 10 months, I had built up immunity to the effects of the Primidone. In September 2005, I was taking 3, 250-mg pills each day with no relief. After another visit with my family doctor, and a lengthy discussion regarding other medications, he suggested Botox treatments. Off to the Ophthalmologist I went. I didn’t think to ask for the “name” of what was wrong with me, I don’t think it even occurred to me that there would be a name for the twitching.

The first meeting was a discussion and evaluation by the Ophthalmologist. He agreed with my family doctor that Botox could help the twitching that was still contained to the right eye. After getting insurance approval, the first set of 3 Botox injections was administered around the corner of my eye at the end of October 2005. This did stop the twitching within a few days and I didn’t notice any side effects other than the minimal pain when the Botox was injected. I was instructed to call when I thought the effects were wearing off and not to rub the injection sites.

Every 2 – 3 months over the next 3 1/2 years I called. I had 12 Botox treatments of 3 injections around the outer corner of my eye each time from October 2005 to May 2008. I either got no relief or some relief – there was no pattern. I did think the relief was related to the injection site and communicated with the Ophthalmologist the best I could so he could administer the injection in the “right” spot. It seemed like a crap shoot every time I went in whether it was going to work “this time” or not. I even offered to get a tattoo on the injection sites where I got the most benefit! The time period in between treatments was based on how fast the Ophthalmologist was able to send a letter to my insurance company and how fast the insurance company approved the treatment. Each treatment was covered so I shouldn’t complain but waiting for that approval was not always pleasant – I just wanted something done. I timed a December 2007 treatment two weeks before Christmas with the hope that this year, I could be in some of the Christmas pictures – never happened. Every time I smiled, my eye closed. I debated whether or not to have any more Botox Treatments. After waiting for months, I gave in to the ever-increasing twitches and scheduled another round of injections. In May 2008, I had what was my last round of Botox. The outcome was the same as before – no relief. By this time, my twitches were getting more intense and instead of twitching, they had changed to closing my eye although it still felt like a twitch to me. My right cheek was just starting to pull up and so was the corner of my mouth. My right eye was now drooping so much that even when I wasn’t twitching, it looked abnormal. Gradually, I started to avoid those situations where the twitching made me a target for embarrassment. Anytime I could wear sunglasses I did. Our family outings became more of a chore for me than fun – I just didn’t want to be stared at. At work, I began to avoid meetings and relied on e-mail and phone conversations instead of face-to-face meetings. Looking back on the experience now, I know I waited too long before requesting another treatment option.

In May, at what was my last Botox Treatment, the assistant offered me information about Blepharospasm. I had no idea my condition had a name. I finally had something I could go research on my own. I had no clue that other people had this condition. I didn’t know anyone who even knew anyone with this condition. Not one person had ever told me that others had this same issue. I left this treatment armed with a pamphlet and hope that this time, the Botox was going to work. I learned that the twitches were actually spasms and there was no way I could ever control them. I learned more importantly, that I was not alone and others have this condition.

After taking a 2 week vacation with pictures of me only in sunglasses, I knew I was done with Botox and had to find another option. I started researching Blepharospasm and was confident that the treatment I had been receiving was on course for what most people received. I do remember reading that this sometimes leads to Hemifacial Spasms. I didn’t research HFS because I thought I had Blepharospasm. I also knew that something else had to be done.

I requested a consultation after returning from vacation with the Ophthalmologist and in desperation, asked what other options I had. The Ophthalmologist was concerned about the drooping eye (Ptosis – the cause was never mentioned although I believe this was a side effect from the Botox) and suggested an eye lift. After having my peripheral vision checked twice, the technicians checking my vision told me that the surgery would be covered by insurance with no questions asked – I didn’t realize my peripheral vision was that bad. They taped my eyelids open and even I could tell the difference right away. Once the insurance approval came through, I went back to the Ophthalmologist for measurements before surgery. During this appointment, the doctor became concerned with how much to lift, since he felt my non-Botoxed eye was drooping as well. This is when he decided to send me to another Ophthalmologist 45 minutes away who specialized in eye lift surgery.

6 weeks later, I met the 2nd Ophthalmologist. His recommendation was to lift both eyes and remove muscle in the right, spastic, droopy, Botoxed eye. He told me the muscle removal should help with the spasms and that if it didn’t, he would follow-up with additional Botox. His other recommendation was to have a MRI to rule out anything else. I had hope that this surgery would help me. I had confidence that the doctor knew what he was talking about and yet I couldn’t make myself believe that this was going to work and my spasms would be gone. At this point, I didn’t care about the peripheral vision – yes, I had to take more care when changing lanes on the interstate but that wasn’t making me turn away from people or find excuses to stay home.

The next week, I got the call to get on the surgery calendar (5 week wait). I questioned the scheduler about the MRI (no note in file) however, she was able to confirm the need and called back the next day with a MRI appointment. I had the MRI on Friday, October 10, 2008 and on Monday, October 13th, I found out through the 2nd Ophthalmologist that he was diagnosing me with Hemifacial Spasm. His treatment recommendation was to continue with the eye lift and eye muscle removal surgery in 2 ½ weeks. I hung up the phone wondering how in the world removing eye muscle was going to stop the spasms and how would that change the effects of Botox? The very next day, I requested a copy of the MRI report and pictures. I think I subconsciously knew that I had to have another opinion before having any eye muscle removed.

I scoured the Internet every day for a week prior to my appointment with my family doctor for pre-surgery testing. I looked for everything I could find about Hemifacial Spasm and came across the Hemifacial Spasm Association website. What a godsend! Here I found other people who knew exactly what I was going through. I felt like I was finally at a place where others could help me understand why my face does what it does when it wants to. I read every Botox Diary and every MVD Diary and did not come across one reference to eye muscle removal surgery. This intensified the warning flag that had already gone off in my head. After reading and reading, my husband and I decided that the only option was to keep the pre-surgery appointment but use this as an opportunity to discuss a better treatment plan aimed at removing the source of the problem and not just treating the symptoms. I was armed with fear and enough knowledge to know that eye lift and eye muscle removal surgery was probably not right for me at this time. Through all of my research, one name kept coming up over and over again. My plan was to discuss with my family doctor who the right neurosurgeon was for me.

On Monday, October 20, 2008 I had a very emotional, lengthy and informative consultation with my family doctor. I know I put his schedule out of whack for the rest of the day but being the guy he is, he never once tried to avoid any of my questions or escape when I slowed down long enough to breathe and glance at my notes. In the end, he totally supported my decision to find a neurosurgeon specializing in HFS. He had one previous patient who had HFS that had received treatment from a neurosurgeon. He checked his files and came back with the same name that I had come across time and time again. The appointment was set – I would be heading to Pittsburgh to meet with Dr. Peter J. Jannetta.

Back to the Hemifacial Spasm Association site I went and that’s how I came across the HFS patient who lives in my hometown and has the same family doctor as I do. We were able to meet for lunch and communicate by e-mail and phone calls. As a two-time MVD patient, my new friend has eased many of my concerns and given me the strength I need to attack this condition head on.

After meeting with Drs. Jannetta and Sekula on November 24, 2008, my husband and I realized that the Botox was only going to prolong the inevitable decision of whether to have surgery or try to deal with the symptoms that will eventually progress. Dr. Jannetta and his entire staff are knowledgeable, comforting, and just ooze with confidence. The calm I felt during and after this appointment made me realize that I was in the best place and this group knew and understood the physical and emotional exhaustion that comes with HFS.

During the one visit, I was able to have my baseline hearing study conducted and also had a Facial EMG. All signs point to Hemifacial Spasm which in itself, is comforting to have a positive diagnosis from a group who knows this condition first hand. I also realized just how lucky I am to have their expertise only 5 hours away.

The decision for me is to pursue MVD. I am done fighting the symptoms and want to attack the cause once and for all. I realize the risks and am willing to take those risks. I’m ready for a change. My MVD is scheduled for March 26, 2009 (delay due to 9 month waiting period after Botox and my choice to wait for Spring Break to help ease the homework load on our family who will be taking care of our children while my husband and I are in Pittsburgh). I’ve started down the insurance road with a request for a Pre-Determination Letter from Dr. Jannetta. My MVD was approved on the same day the Pre-Determination Letter was received by the Insurance Company. I didn’t ask any questions so I have no idea why it went through so fast. I’m hopeful that this will be a small roadblock to overcome and are hopeful that this minor inconvenience will resolve itself quickly. More to follow on the next adventure……

Permission granted the HFSA to post Botox® Experience on website.
Missy Dean, February 25, 2009

 

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