Botox® Experiences - Darlene Frederick
For those of you who have read my personal history, some of this information is a repeat. As I read through the HFSA website last evening, I realized that I had not submitted my own Botox® experience and thought it might be helpful to others. Please feel free to
if you'd like more information.
After being referred to a neurologist in August of 2001, he immediately knew I had HFS and offered some options (medication, Botox®, surgery or do nothing) and after a brief trial of medication I opted for Botox®.
The first injection was September 12, 2002 and the doctor informed me there might be temporary drooping of the facial muscles. He also explained the goal of injections would be to “fine tune” them so that I could get maximum relief. This would be accomplished by trying to locate all the affected muscles over the course of future appointments/injections. If the injections stopped the spasms in those areas, at some point in the future he would inject multiple muscles in one single visit and I might be spasm free for 6-7 months, possibly longer. After many months of right-sided spasms, the promise of this treatment offered much hope.
The spasms initially decreased; however, there was pronounced facial drooping which started about 72 hours after the injections. The drooping was startling to myself and friends feared I had a stroke. I was as self-conscious about the drooping as I was about the spasms themselves. As the drooping increased, a call to the doctor's office informed me that the drooping was temporary and could last “about a couple of weeks”. At the time of a follow up visit with the neurologist in December 2002, the entire right side of my face continued to droop though was slowly beginning to improve. Even with some resolution, the drooping disturbed me, as it did not fit the "couple of weeks or temporary" as I envisioned it.
Subsequent injections in January, April and August 2002 brought more drooping and incomplete resolution of spasms. During the course of the last 4 Botox® appointments I pinpointed areas where I could feel spasms yet it appears to me all the muscles were not injected or Botox® was ineffective. I feel this because a few days after initial injections the drooping began and there was incomplete resolution of spasms around the eye and cheek. Since that initial injection, there have always been other areas that continued to spasm, even after what seems to be adequate time for Botox® to take effect. My last Botox® appointment was August 28, 2002, and at that visit I again pinpointed spasm locations. He avoided the eye and mouth area to aid in resolution of the drooping and injected three areas on the face. The only affect of those injections was the inability to raise the right side of my nose. The spasms of the eye, mouth and chin persisted.
Though Botox® therapy has advantages for some who suffer with HFS (or for folks suffering from other conditions), after 4 appointments I began to wonder if this method of treatment would ever provide long term relief. Considering I was 40 years old and had no other major health concerns, I also wondered if continuing injections every 3-4 months for possibly the rest of my life would ultimately be the best option for this condition. Additionally, I became concerned about possible long-term side effects of Botox®. It was at this time I began searching the Internet for additional information.
The drooping around the mouth was still very noticeable 4 months after that last injection, which was around Christmas of 2002, and I never had a completely normal smile since that first injection in August of 2001.
After locating the HFSA and reading both personal accounts as well as the need to be off of Botox® for 9 months prior to surgery, I knew that the August 2001 injection would be my last, as least for HFS. I did not research Botox® through their web site yet that "gut feeling" kept telling me that having a toxin injected into my face for the rest of my life just did not seem like a wise decision. .
As I update the Botox® information from my personal history today (April 21, 2004), I can say with confidence that if my spasms ever return I do not plan to pursue Botox® injections again unless there are other health concerns that would prevent me from having a second MVD. Some in the HFSA have stated they cannot or will not have surgery and therefore Botox® is their best hope. I have a selfish wish that everyone who has spasms could have a successful MVD and be rid of them forever. But, as I've mentioned in emails to the group, life is uncertain and we don't know what tomorrow holds. At the time the neurologist told me about the surgery, he did not share a lot of detail and I did not ask - I was so hopeful that Botox® would be the cure! But, looking back, I should have asked more about the surgery and just might have made my own decision to have surgery much sooner. Then again, everything happens for a reason and perhaps if I had never had Botox® then I would not have found the HFSA. .
For details of my HFS experience leading up to my MVD see my Personal HFS History.