Botox® Experiences - Sara Hartman - MO

After experiencing little relief and bad side effects from Topamax, the fifth medication I tried, and following a lot of consideration, I decided to go to the Washington University Movements Disorders Clinic for a Botox® treatment. I was not able to get an appointment with my physician of choice, who was not taking new patients until January 2007. Another neurologist had a cancellation for 08/09/06. I checked his profile on the Washington University website, and since he listed Hemifacial Spasm in his areas of interest, I scheduled the appointment.

I was extremely nervous and my 18-year-old daughter accompanied me to the appointment. Before I went in, I asked the nurse to double check that my insurance would cover the treatment, since I had never heard from them. She told me I would need to have a consultation with the doctor before the insurance company would approve the treatment. I was a little dismayed about that because I did not want to have to go back again, but she explained that they would call the insurance company right after the consultation to get the approval. Then I had an examination by a resident and then the doctor came in. I explained that I was hesitant to get the shots due to possible side effects, such as having my eye stuck shut, or having to tape it shut at night, or having a droopy mouth on one side. He promised me (yes, he actually said "I promise you,") that none of those things would happen because the odds were so low for any problems with Botox®, and that I would be very happy with the results. Then he said I was only scared because I read too much. At this point he left the room to call the insurance company, and my daughter said I should tell him that odds are meaningless to someone who has been struck by lightning AND has Hemifacial Spasm.

When he returned we moved to the treatment room where he had me sign a waiver that he was not responsible if any of those things did happen. Then he gave me five injections, three in the upper lid, one in the lower lid, and one in the cheek. I asked him why he was putting so much more in the upper lid when I felt most of the spasm under my eye. He said that despite the way it felt, that most of the movement was in the upper lid. Then he said that I would see an effect in ten days to two weeks, and sent me off to make another appointment for three months later.

Well, the next afternoon as I was reading a book, I noticed that my eye felt dry. I went to the bathroom to put some drops in and when I looked in the mirror I saw that my left eye was not blinking, although I could close it if I scrunched the other eye shut. I pretty much lost it. I mean, since the neurologist told me that I would not see an effect for up to two weeks, how much worse was it going to get if I couldn't close my eye the very next day?

I went directly to the archives and did a search for Botox®, and discovered that it was not uncommon for this to happen, and often would relax in the first five days to two weeks. This did not make sense to me. How could a toxin that is supposed to peak in two to four weeks cause a side effect that starts right away and dissipates over two weeks?

Over the next few days, my eyesight in the left eye blurred somewhat. Not a lot, but enough for me to notice and to get headaches as my brain tried to compensate. So, I made an appointment with my ophthalmologist and I learned a lot during my appointment with him. For instance, women are more prone to dry eye than men because tear production is linked to testosterone levels. I never would have guessed that.

He did an examination and told me that my eye was "as dry as the Sahara." He further explained that I lacked a reflex known as Bell's Phenomenon (named after the same neurologist as Bell's Palsy). Most people's eyes roll up slightly when the lid is closed. Since there is a small space between the lids even when eyes are shut, my corneas are exposed to air even when I am sleeping. He said that he would not recommend Botox® for persons who lack Bell's Phenomenon. I need to use lots and lots of lubricating drops, because if my eye gets too dry the cornea can be damaged enough to scar, which will permanently damage my eyesight. He estimates that I will have the dryness for eight to twelve weeks, until the Botox® wears off. And, if I get Botox® again in the future, the same thing will happen. He also said that sometimes the dryness gets so bad that the affected eye has to be sutured shut until the effects of Botox® wear off. I am going back for a follow-up this week

The dryness is a little better now. I probably need drops every hour or two instead of every 20 minutes, and I am still using the gel at night. My left eye is still pretty goopy in the mornings, whereas the right eye will have cleared up overnight, so I know my left eye is not producing many tears.

The worst part is that the area under my eye and cheek still go into spasm. At first they were even stronger than usual but have now settled down somewhat. My friends tell me they are much less noticeable, probably since my upper lids are immobile, but I can still feel them, particularly when I go to bed and when I wake up. The sound in my ear has changed from a click/pop noise to a whoosh sound. Although the sound is not as loud, the change is somewhat disconcerting. I'm sure that the neurologist would consider me a positive outcome considering that my spasms are less severe, my face is not droopy and my eye does shut. Still, I have cancelled my next appointment. Three to four weeks of debilitating dry eye every three months is not an acceptable tradeoff for me. It is not worth it to risk my vision for a treatment that does not stop completely stop the spasms.

In looking for the positive side of this experience, I now know for certain that I do not wish to continue Botox® treatments, and have a medical reason to present to the insurance company when appealing for out-of-network surgery approval. My husband does not want me to do any more Botox® and is behind me having MVD surgery. Although our original plan was to wait until 2008 for surgery, my husband now thinks we should try to do it as soon as possible, which would be May 2007. We will need to ask our insurance company to pay an out-of-network surgeon at in-network rates and my ophthalmologist is willing to help with the process. I have an appointment with my regular neurologist in October 2006 and I will ask for his help as well. At present I am leaning toward Dr. Casey in Detroit, MI (USA).

I am anxious about what it will be like between the Botox® wearing off and the surgery. I figure it is going to wear off just in time for holiday festivities. But I have to keep reminding myself that I don't need to worry about that right now, and maybe I'll be one of the lucky ones for whom Botox® lasts five or six months instead of three.

I'm very thankful for this group, for those who didn't mind me contacting them personally about their Botox® experiences, and for the archives where I could find out so much about what I could expect. Knowledge is power, as I wish I had reminded the doctor when he told me I read too much. In closing, I would like to urge everyone considering Botox® treatment to ask for a simple screening for Bell's Phenomenon.

Permission granted the HFSA to post Botox® Experience on website.
Sara Hartman - MO, September 04, 2006

 

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