Botox® Experiences - Karen V.
Okay, here is my Botox® experience:
I started noticing spasms in October 2002, and was diagnosed with HFS in February 2003. My neurologist referred me to an ophthalmologist who has administered Botox® therapeutically. In fact, she has another patient with HFS who has been receiving Botox® from that ophthalmologist for a few years and was pleased with the results.
I believe the ophthalmologist I saw was very capable. He spent a good amount of time explaining the Botox®, his conservative approach to injections, mapping the injections, possible side effects, etc. I had about 4 or 5 shots that day, mainly around my eye and upper cheek. They were only painful momentarily, and there was no further pain as a result of the injections. He started me out on small dosages, explaining that he will see me again in about a week to reevaluate my treatment and possible give more Botox® if needed. I was very impressed with him.
The shots did not start taking effect for 3 or 4 days. As expected, I had slight bells palsy on my right (effected) side. What I did not expect is that my right eye was very sore and felt constantly tired.
When I saw the ophthalmologist again in a week he explained that Botox® can make your eye dry, and suggested eye drops for the soreness. He felt I probably needed more Botox®, since I still had a considerable amount of spasm, especially in the lower cheek and nose area. He wanted to wait another week though, because he said the full effect of Botox® is not the same for everyone and that I may still get more benefit out of what was already administered. Plus, he prefers to be cautious so there will not be unnecessary droopiness, drooling, eyelid droop, etc.
When I saw the doctor again in another week we tried about 4 more injections, which, again were mapped. He took photographs of my face relaxed and smiling, and wanted to see me again in a few weeks. In a few weeks he looked over the total effect (which seemed optimal) so that he would know how to continue in future sessions. Again, he took photographs of my face relaxed and smiling. At this point my smiling face was quite different---very little expression on my right side. This did not bother me, or should I say I was willing to give up movement on one side of my face to control the spasms.
The problem was that I felt I was still having the spasm, only it was being masked. In some ways this bothered me even more. My eye was also constantly dry and irritated. I developed two cases of conjunctivitis as a result of constant use of drops. I still had quite a bit of pain in my eye and behind my eye. I also started getting headaches, and tiring easily, plus I developed blurry vision and sometimes double vision. (Horizontal, not vertical.) It was around this time that I discovered the Hemifacial Spasm Association (HFSA). I poured over all the material---MVD Diaries, Personal HFS Histories, and links to everything imaginable. I had been getting very frustrated with my condition and literally quite depressed. I was no longer working (I am a realtor, and could not get myself to interact with people outside my family or a few close friends.) I think I spent 48 hours on the Internet doing nothing but reading about HFS, eating and sleeping. It was at this time that I decided I had to cure this condition rather than cover it up for the rest of my life.
Fortunately my local neurologist has been very receptive. Although she feels confident that she diagnosed the condition properly, she admitted that she is only a community neurologist, and does not know all the latest and greatest on this specific condition. When I told her about the association and everything I learned she was very supportive of my decision to have surgery. She was also grateful to have a site to refer any future patients to for more information. She was unaware that most surgeons require a perspective patient to be "Botox® free" for nine months.
Now that the Botox® is wearing off my vision seems to be improving. I certainly have not experienced any more double vision. While those close to me say they can see my spasms more, I feel them less. I think it's because the underlying spasm was always there; my muscles were just paralyzed so the spasms were not visible to others.
Despite the fact that I obviously did not like the results of Botox® I am not sorry I tried it. In fact, I do not feel that I would be feeling so confident in my decision to have surgery if I had not tried the one other treatment that has brought others success. In terms of having to wait longer for the surgery as a result, I guess you just have to put everything in perspective. I will have only had HFS for a little over a year, while others have suffered with this for a decade or longer. Nine months, hmmmm. I remember the last two times I had to wait for something for nine months brought me the birth of my daughter and then my son. They were certainly worth the wait, and I know this surgery is also worth the wait. The anticipation I am experiencing is also similar to pregnancy. And just as having children gives you a whole new perspective on life, so does being afflicted with HFS. Fortunately this condition is not painful, nor is it life threatening, but those of us who are affected by it know how it can change our lives.
I just want to add that I believe my Opthamologist did a fine job, but that we all react differently to Botox® as anything else. For one thing I tend to be very sensitive to most medications. If you are considering Botox® make sure it is with someone who is experienced with the therapeutic aspect of it. I have seen the opth. again and told him I had decided to have surgery. He, too, was very supportive, especially considering my age (46). He thought nine months was ridiculously long to have to wait since the basic benefits of Botox® wear off in 3 months. I will make sure I supply him with correct information regarding this when I see him again. In the spirit of informed consent I believe that any doctor giving Botox® for HFS should let their patient know that if he or she decides to have MVD they will have to wait.
Like so many other people I have encountered through the Hemifacial Spasm Association (HFSA), I encourage anyone who has questions to contact me. The support here has really changed my life and my ability to cope with HFS. I hope I can help someone else out there.