Botox® Experiences - Jim Evridge
My very first experience with Botox®, to calm down my HFS, was in 1996. At the time I knew nothing at all about HFS and compared to what I now know, as a direct result of the HFSA, the neurologist I was seeing knew little more than I. Other than she "thought" Botox® injections "might" help me. After thinking it over for a few weeks, I decided to give it a try. Not only were the spasms affecting me at work (I was a welder/millwright and the spasms were affecting the vision in my right eye terribly) with my co-workers constant harassment, but it was affecting my vision while driving. Also eliciting stares from others while in public.
I went back and had the injections. She used, if I remember correctly, 30 or 40 units of Botox®. Her explanation: It comes in 100 unit bottles, so we might as well use as much of it as we can. What's not used will only be thrown away, and you paid for the entire 100 units". After the injections she informed me that it would be several days to a week before I would notice any results. I thanked her and left. It would be a short drive home, from the doctors office in Wilmington, Delaware to my home in Pennsville, NJ, about a total of 10 miles. As I was driving across the bridge into New Jersey my wife began yelling that there was something wrong with my face. At just about the same time I noticed something also, the right side of my face was not twitching. As a matter of fact, it was completely numb, felt very heavy, and my speech was affected. By the time we got home a few minutes later, nothing at all was moving on the right side of my face, and it appeared as if I had suffered a major stroke! My wife immediately called 911 to report that I must have been having a stroke! The EMT's arrived and their initial assessment was a stroke, so it was off to the hospital! After numerous tests and scans, it was found that I didn't have a stroke. It appeared to the Emergency Room doctor's that what had occurred was the result of way too much Botox® injected into the muscles of my face.
Firstly, for years I suffered the "embarrassment" of the muscle spasms, now I had to suffer the "utter humiliation" of looking like Quasimodo or the Phantom of the Opera, unmasked. It's ironic, that through all of the further embarrassment and humiliation of the next six months, the only offers of "support" I received were "hey Jim, you know you probably have a good case for a lawsuit". That was the furthest thing from my mind at the time, although in hindsight, they were probably correct. But what good would it have done? It wouldn't restore my face over night as quickly as it was disfigured, and, a young doctor's career would more than likely be ruined. After hearing what had happened to me, my calls to the doctor's office either went unanswered, or not returned. I persevered, but it took almost a year for the paralysis to go away. I vowed to never have Botox® again, yeah, right!
Five years of progressing spasms and eye problems later, a much darker and somber neurological illness came to the forefront in my life, Parkinson's Disease. While undergoing every neurological test and evaluation to verify the Parkinson's Disease, one of my neurologists, a MDS (Movement Disorder Specialist) asked me how long I've had Hemifacial Spasm. My reply was, "I thought you all said I had Parkinson's Disease?" "you do" was her reply, "but you also have another incurable neurological disorder, known as HFS, totally unrelated to your Parkinson's Disease." Can you imagine how it feels to learn in just the space of a few days that you have not one, but two, incurable brain illnesses?!!!
In any event, since HFS is not a killer as Parkinson's Disease can be in some cases, the main thrust of my attention was on getting my Parkinson's Disease under some sort of control. As the various Parkinson's Disease medications were helping me to get by with a reduced form of new found "normalcy" the "twitches" and spasms of my face began a renewed prominence in my life. Also, by then, summer of 2002, I became computer "oriented" and was led to the wonderful HFSA where I learned about this condition we all share. At the time, my present neurological group, which was treating my Parkinson's Disease, had no one familiar with HFS, so I was referred to a group of neurologists in Newark DE (USA), just across the bridge from my home here in Southern New Jersey. Ironically, the very same group where I had the terrible Botox® mishap several years before. What would I do? The neurologists I trusted had no one that could help me, and the spasms were getting quite bothersome. They now encompassed my chin and neck. With much trepidation, I made an appointment, only after learning that the doctor who made "the terrible mistake" was no longer in practice with them.
The "new guy" was just that, the new guy in the office. I was "loaded for bear" that first visit. Having "been around the corner several times" in getting to know how the brain, my brain, operates since the Parkinson's Disease diagnosis, and especially after finding the HFSA, he soon realized I knew what I was talking about. I believe it became a learning experience for him. It isn't too often that a patient knows more about a disorder than the treating physician! Since I had been a previous patient, he wanted to see my records from before and what had transpired. Guess what, there were no records of me anywhere in their files or computers! Nothing, nada, zilch! I didn't exist to them prior to that day! In any event, after several conversations with the young doctor, a trust of sorts began to form between us, and my insurance company appoved the Botox®. He proceeded with maximum care, based on my previous horrible outcome, maybe a little too cautious, at first. Two weeks later, the spasms were back, not as bad, but they were back. So, back for more Botox®, This time, he got carried away and injected me in eleven different locations using 27.5 units total! You guessed it, the stroke look was back! Not as bad as the first time, my face wasn't paralyzed as before, but a definite stroke look! Before my next series of shots I asked him if he would consider using EMG to determine exactly which muscles were affected the worst and could be causing the lateral spread throughout the other muscles in my face, chin, and neck areas. NOTE: all the above regarding EMG and lateral spread was garnered by me here on the HFSA site.
In any event, he said I didn't know what I was talking about. EMG wasn't designed for that purpose, according to "Doogie Howser" as I came to call him because of his youth. Shame, because he is rather bright and has the early earmarks of becoming a brilliant neurologist one day. I returned for a few more series of shots from Doogie" but our relationship became cooled and strained over the EMG episode. So, back to the "drawing board" for me to find a "new" to me neurological group having someone familiar with HFS and the injection of Botox® to control the spasms.
As fate would have it, I was helping a new member of our group find a neurologist here in New Jersey, since she only lives about 25 miles from me. While checking the website of my present neurological group which takes care of my Parkinson's Disease, I found that just within a day or two of my search, a new neurologist had joined their group. This new doctor was not only well versed in HFS, he was also a skilled and highly trained user of Botox®, AND, he uses EMG to locate the exact muscles that are most affected by the Cranial Nerve VII transgressions! My prayers were finally answered, all thanks to the HFSA group and the new member.
My first visit in November 2006 was a "get to know" each other session. My past experiences, and horrors, plus a medical examination , no need for any x-rays or scans to rule out any other possible causes such as tumors as those had already been done, much more extensively when I was diagnosed with Parkinson's Disease.
I just had my first series of Botox® injections 10 days ago, December 06,2006. Instead of the eleven or twelve shots, and 26 to 28 units of Botox®, as in the past, my "new" doctor only injected in four locations, 3 units per location, for a grand total of 12 units of Botox®!
The four locations are one in the top eyelid, just about to the right of center, and at two locations in the lower lid: one towards the outer corner of the eye, and one nearly to the inner corner of the lower eyelid. The 4th injection site was in the nose area under the inside corner of the eye, about 3/4" below the eye, and in the area of that long muscle that goes down to the corner of the mouth area. I questioned his use of only 12 total units and he explained that the areas he injected were in all probability the ones responsible for the lateral spread.
Here it is ten days after the injections. I still have a few flutters every now and then, but that's it, just flutters. Nothing that I could classify as a spasm. Most importantly, nothing that an "outsider" can notice! I have a follow up visit scheduled for a few weeks from now, so maybe with the EMG he can find the flutters and get a "booster" shot or two.
See the "before and after" pictures below:
Permission granted the HFSA to post Botox® Experience on website.
Jim Evridge, December 16, 2006
