Botox® Experiences - Homer Wesolowski
July 1998
Here's what I know about Botox®, assuming that I am correctly relating what my doctor has told
me:
Botox® works by chemically attaching itself to the ends of the nerves that transmit the signal
to the muscles. The signal is blocked, so the muscle doesn't twitch. It doesn't really attack
the root problem at all. It is effective after about a week and a half, but it takes about 3
weeks for the full effect. After three to four months, the nerves will have started generating
new ends, and the effect wears off. The return of the twitch is gradual, but at some point it
will cross a threshold and it will seem as if it suddenly (over the course of a week or so)
returned. Then you go get it again. I have been every 5-6 months. I have only been on it a
year, so I don't know the long-term effects, or why it becomes less and less effective. It may
be because people build up a partial immunity to the toxin.
Botox® comes in a tiny vial, with only a few specks of Botox® in it. This is 100 units of
Botox®. They're called mouse-units (the amount needed to kill a mouse, which disturbed me
until I realized how much bigger than a mouse I am). Because of the expense of the drug
(according to my doctor, it's because only one company, Allergan, can make it), the doctor
will waste as little as possible, scheduling all his Botox® patients on the same day, in order
to pool the requirements. I get about 20 units, so I'm glad I don't have to pay for all 100!
My doctor uses about 500 units every other Friday. We HFS guys get relatively little; people
with Tourette Syndrome get about 200 units - they have a larger set of muscles that need
blocking.
The doctor uses a different needle for each patient, of course, and the needle is tiny - 24
gauge - so it doesn't really hurt - uncomfortable probably describes it best. Regardless, the
first two times I took it sitting up and ended up feeling nauseous and lightheaded, which is
my reaction to just about everything medical. The last time I asked to lie down, and with my
feet elevated, I had no problem. Most people seem to describe the pain as discomfort, but I
have heard two say that it was quite painful.
I get 4 to 5 shots in the muscles that circle the eye, not in the eyelids. The object is to
prevent twitching in that muscle without interfering with blinking. The twitching in the eye
tends to trigger the twitching in the cheek and chin, so the majority of attention is
concentrated there. I get one shot in the upper part of my cheek, one in my cheek, and once I
got one in my chin. My doctor feels with his fingers for the muscles that are twitching,
although he says he could use a 28 gauge needle with a sensor, hook me up to a machine, and
use instruments to tell. However, facial muscles are close to the surface, and barring a
fairly pudgy face, he can get by without. This reduces expense considerably, and based on
results, I'd say it works. The whole appointment takes about 15-20 minutes, with the shots
taking about 5 minutes.
My doctor tends to apply the Botox® conservatively, and has me come in after a couple weeks
for a booster if I think the twitching is still excessive. He is concerned about the side
effects - the drooping smile. As far as the drooping smile goes, it can be somewhat mitigated
by getting corresponding shots in the other cheek. Unlike your arms, where if they were
unequal strength, your brain sends a stronger signal to the weaker arm to automatically
balance the effect, the sides of your face get the same signal. So if one side is weaker, it
droops. By weakening both sides, the brain sends a stronger signal to both, and neither side
droops (rather than both sides drooping). I had this done the last time (I got 3 units in the
twitchy cheek and 2 in the other cheek). The truth is somewhere in between - although I am not
unbalanced, I can't smile as broadly as before, either. I'd say I am better off with the shot
on both sides. The sort-of good news is that with the Botox® treatment, the one side of my
face looks younger! No more wrinkles at the corner of my eye. My brother, an optometrist in
New York City, says some people get this in order to look younger. He says I should ask my
doctor to treat both sides!
At the time, I had Blue Cross/Blue Shield insurance provided by my company, so all I had to
pay was my yearly deductible.
Follow-up, June 1999...
It turns out that June 1998 was my last Botox® injection, because by December I was seriously
thinking about getting the MVD surgery. The surgeon prefers that the effects of the Botox® be
reduced when you have the surgery.
In March 1999, I decided that Botox® hadn't worked well for me, because I was too far along
before I tried it. I thought with HFS you go through three stages: early - when the symptoms
are easier to live with than any of the treatments, middle - when the twitching is affecting
only part of the face, and late - when you're twitching from forehead to chin (or more) and
experiencing sustained contractions. I thought Botox® would be most effective during the
middle stage - a minimum amount would be needed to have maximum effect. Later, the
effectiveness diminishes and its own effects become quite pronounced.
My case of HFS progressed more slowly than most, I believe. I experienced the early stage for
about 3 years, the middle stage for about 4 years, and the late stage for 3 years.
In April 1999, I learned that sometimes some of the effects of Botox® are permanent. Since my
MVD, I've had facial weakness that is exactly like what I experienced when my Botox® was in
full force. My surgeon says he thinks the Botox® had been having that effect all along, but it
was masked by the fact that my muscles weren't getting a strong signal through the facial
nerve. The MVD restored nerve signal strength, but now the Botox® is blocking it.
If the effect can remain forever, it might not be such a good interim solution, even for the
middle stage. There's a risk and possibly a significant expense associated with Botox® (not
quite the risk and expense associated with MVD, but the benefit is either). So it isn't a
no-brainer to use it; it's another decision each person must make.
I would neither persuade nor dissuade anyone about using Botox®. I would suggest that if they
are inclined to try it, the middle stage is the appropriate time, and that they watch for a
point when the positive effects are less than the negative effects.
Follow-up, October 1999...
In a presentation about HFS, Dr. Jannetta said use of Botox® correlates with decreased success
of MVD surgeries, another factor to take into consideration when thinking about Botox®. The
decrease in the success rate is a few percentage points.
For details of my HFS experience see my Personal HFS History.
For details of my MVD surgery see my MVD Diary.
Permission granted the HFSA to post Botox® Experience on website.
Homer Wesolowski, October 16, 2001
Back to top
HFSA HOME
Home |
Alternative Treatment Exp.|
Ask The Docs |
Bell's Palsy Exp. |
Botox® Personal Exp. |
Botox® Usage |
Chat Room |
Contact Us |
Contribute |
E-mail Archives |
HFS Histories |
Important Dates |
Informational Pamphlet |
Join Us |
Links |
Medical Advisory Board |
Medical Terms |
Members |
Membership Summary |
MVD Diaries |
MVD Surgeries |
Organizational Structure |
Pictures |
Site Map |
Site Policy
Copyright © 2001, The Hemifacial Spasm Association (HFSA) Rev. 040901