Botox Basics
I have answered a lot of questions about Botox on several forums and I would like to compile a database of people's experiences to see if we can suggest some guidelines for someone looking at Botox treatments.
First of all, everyone should realize that Botox injections are more of an art form than a science. It requires precision in dosage, location, and muscle selection. A Botox specialist is essentially a sculptor of muscles not just a botox delivery system.
I have a theory as to what makes a successful treatment and what causes immunity. First of all, I understand that the rule of thumb is Botox should be applied every 13 weeks. More frequent injections will result in the body fighting the toxin with antibodies. Excessive amounts of Botox can also cause antibodies to form. Once you have been injected, you can't come back a week later because you missed a location or there wasn't enough Botox.
I believe the most successful treatments are given by neuros who have a lot of training and experience or a good sense of what needs to be relieved. Allergan is the manufacturer of Botox A and often holds conferences to teach neuros to inject Botox using a modified EMG machine. There is your basic difference in treatments. 4 years of training and extensive experience vs a weekend at a resort and training from an Allergan hired neuro. Not all of the neuros who get a crash course are bad, many of them are excellent neuros who have excellent medical skills and insight. I have had both types and the best neuros do not need the help of an EMG machine, they can observe and/or feel your spasms and make good quick decisions on dosage, muscle selection, depth, and pattern. Again, not all neuros who use EMG machines are bad. They may lack the confidence or are using the EMG to check their decision. My experience was horrible, it would take up to an hour of torture and bad results. Now, my neuro and I discuss the effectiveness of the last treatment then he observes my movements carefully for a few minutes then he maps out what he wants to do and the injections are done in less than 5 minutes. I get 275 units now and my previous neuro was 400 to 500 units.
Where am I headed with this? I want to empower other Dystonia sufferers to have a voice in their Botox treatments. Don't be afraid to ask where the neuro got his Botox training. Don't be afraid to ask how many he does in a year. The better the training and the more the experience, the chances of success is higher.
I'd like those who get or got Botox treatments to share their experiences and to ask their neuros the questions I mentioned above. We all deserve a better quality of life and it is up to us to find the best way to get it. Botox experience varies and it does not translate to expertise. Take charge of your treatment. If you don't get a warm fuzzy after asking the questions, go to the next neuro. Ask for recommendations on the many local support groups that are forming. I just started one on Facebook for those in the Metro NY and Metro Philadelphia area. I happen to live right smack in between the 2 cities.
First of all, everyone should realize that Botox injections are more of an art form than a science. It requires precision in dosage, location, and muscle selection. A Botox specialist is essentially a sculptor of muscles not just a botox delivery system.
I have a theory as to what makes a successful treatment and what causes immunity. First of all, I understand that the rule of thumb is Botox should be applied every 13 weeks. More frequent injections will result in the body fighting the toxin with antibodies. Excessive amounts of Botox can also cause antibodies to form. Once you have been injected, you can't come back a week later because you missed a location or there wasn't enough Botox.
I believe the most successful treatments are given by neuros who have a lot of training and experience or a good sense of what needs to be relieved. Allergan is the manufacturer of Botox A and often holds conferences to teach neuros to inject Botox using a modified EMG machine. There is your basic difference in treatments. 4 years of training and extensive experience vs a weekend at a resort and training from an Allergan hired neuro. Not all of the neuros who get a crash course are bad, many of them are excellent neuros who have excellent medical skills and insight. I have had both types and the best neuros do not need the help of an EMG machine, they can observe and/or feel your spasms and make good quick decisions on dosage, muscle selection, depth, and pattern. Again, not all neuros who use EMG machines are bad. They may lack the confidence or are using the EMG to check their decision. My experience was horrible, it would take up to an hour of torture and bad results. Now, my neuro and I discuss the effectiveness of the last treatment then he observes my movements carefully for a few minutes then he maps out what he wants to do and the injections are done in less than 5 minutes. I get 275 units now and my previous neuro was 400 to 500 units.
Where am I headed with this? I want to empower other Dystonia sufferers to have a voice in their Botox treatments. Don't be afraid to ask where the neuro got his Botox training. Don't be afraid to ask how many he does in a year. The better the training and the more the experience, the chances of success is higher.
I'd like those who get or got Botox treatments to share their experiences and to ask their neuros the questions I mentioned above. We all deserve a better quality of life and it is up to us to find the best way to get it. Botox experience varies and it does not translate to expertise. Take charge of your treatment. If you don't get a warm fuzzy after asking the questions, go to the next neuro. Ask for recommendations on the many local support groups that are forming. I just started one on Facebook for those in the Metro NY and Metro Philadelphia area. I happen to live right smack in between the 2 cities.
Replies to This Discussion
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Permalink Reply by noelv on -
I can't find your other posts. Are you happy with your results? Does it give you sufficient relief to improve your quality of life? If you say no to either question, find a movement disorder specialist who was trained at a teaching hospital how to use Botox. One weekend seminar does not a Botox specialist make.
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Permalink Reply by beka on -
Time for you to head to another movement disorder physicia who listens to YOU. Not your muscles !!
beka
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Permalink Reply by TWISTEDJAM on -
Hi Noelv !
My most recent Botox injections were given this April 17TH for my CD.
I was diagnosed in 2007. Ever since then I've had terrific results after Botox shots. Now I find myself feeling very weak on my left side with much difficulty trying to hold my head up. Walking as well is now such a unbearable task ... feel as if I have a steel pole jammed in my upper spine! Feeling very stiff ! Also have 5 degenerated discs on my upper back. I was told by my Nero that this was caused because of the two new sites she injected.
( I did notice the needles were much longer this time ).
I had 350 units ... total of 10 shots around the neck area with the aide of an EMG.
She told me that this is an imbalance and it should subside in 2 - 3 weeks.
In the mean time I've been told to rest and not to strain my self with any activity whatsoever.
Meds are out of the question right now as I was advised that this would only complicate the healing process.
I was on Artane one year ago and had to ease myself off of them as they made me very groggy
with poor concentration.
For the first time I'm using the aide of a cane ( my mom's second one ) which I find helps with my weak left side.
I'm worried that the Botox has given up on me !
(((((((( H E L P ))))))))
Grace ( Toronto, Canada )
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Permalink Reply by noelv on
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Sorry, I've been away for a while dealing with other important issues.
First off, I don't think the Botox has failed you, your neuro has. If you were getting good results, why did she change the injection pattern? Can you get an explanation as to why?
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Permalink Reply by Bud on
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My wife has focal SD with left turning head and neck spasms. Four times Botox used at 300,300,400,400 dosages. Maybe 10% improvement then right back after 6 weeks. Using movement disorder specialist at Robert Wood Johnson Hospital New Brunswick,NJ Do not have confidence this plan is working. Any alternative suggestions besides DBS?
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Permalink Reply by noelv on
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Dosages seem high. Take the train to Penn Station and the A train to Columbia's neurology institute where they pioneered the use of botox. I go there and I have multifocal dystonia including the jaw and dosage is 275 units. Please do yourself a favor and get better treatment.
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