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 bkaren46 on -
Hello Noel & Beka,
I know my Neuro has done a lot of injections, that is all she does on Friday's.
My 1st Botox injection was Feb of 08, and it was EMG guided it took a few weeks for my treatment to kick in. and about a month before my next treatment my head was tilted again and I was in a lot of pain.
Since the first treatment I have had injections May 08, Aug 08, Dec 08, I will be going again in 3 weeks. Only the first time did my doctor use emg guided, she feels around my neck and shoulder and can find exactly where she needs to inject.
My 1st two treatments My head was twisted to the left and my shoulder was 2-3" above my head. The 3rd time it was the right side of my neck that was twisted and my injections were giving on the right side. Last time and now this up coming time it is back to being left sided. Is this common to go from side to side?
These injections seem to be kicking in quicker and they ware off about 4-6 weeks prior to my next set of injections.
I just started having problems with my right cheek having muscle spasms they only last a few minutes and then my cheek will get stuck and it pulls on my lip, this is painful but I can rub it for a few minutes and than it goes back to normal.
Could this be Dystonia?
Thank You
Karen
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Permalink Reply by noelv on -
Sounds like it is and the good news is you are responding to the Botox. You're just not getting the right results. Botox can be trial and error and my current neuro said it could be 4-5 treatments before they rreach an ideal pattern. Do you know what your dosage level is? Your injection patterns are changing a lot, it should be minor tweaking? The latter is better. My head tilted to the right but I get injections on both sides to avoid what you are getting. Your neuro should recognize that by now after 4 treatments. Your next treatment should include both sides, in my opinion As for wearing off too soon, the dosagew could be low. Are you on Botox A or B?
As for doing it a lot, do you know how many on a Friday? My neuro does Botox 2 full days a week and accomodates a few patient when he has time the other days. I can see his schedule and its typically 10-20 on those days so 2000-4000 treatments a year is a likely number since we all go regularly every 13 weeks (91 days or 3 months) Do you know her training and how long she's been doing it? You can e-mail me with the neuros name and location so I can keep a database. Be patient, don't give up and take charge. Let us try to help you help yourself. The more info you can give us about the treatment, the more likely we can make good suggestions on how you can be a partner in your treaatment. Knowledge is power and with more knowledge we can improve our results.
By the way, my previous neuro did Botox only on Tuesdays but he saw only 5-8 patients from the schedule I saw. He had us in 45-60 minute blocks. So he's 250-400 a year, a far cry from 2000-4000.
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Permalink Reply by bkaren46 on
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Thank You for your quick response. I am on Botox type A I get about 250-300 units each time, but she only does the side that is twisted and my shoulder area each time. I will e-mail you her web page. I will talk to her about injecting both sides. Does this mean I am going to need injections in my cheek?
Will you let me know what you think after you have seen her web page?
Thank You
Karen
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Permalink Reply by noelv on
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Are you biting or clenching?
Just think about it, Botox weakens muscles and when one side is weak then you have an imbalance even if it's not Dystonia related. 250-300 units seems to be a lot for one side. I get 200 for both sides and 35 on each side of the mandibular jaw muscle.
I just e-mailed my contact at Harvard Med to get recommended experts for you. Maybe Mass General is the place to go for you.
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Permalink Reply by bkaren46 on
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Hi Noel,
I see Dr. Nutna Sharma she works out of MGH and Brigham & Womens. She only does botox at B & W Hospital. Besides injections in my neck, I also get them in my shoulders.
Karen
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Permalink Reply by noelv on
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I posted 2 names from Mass General that you can consult with. They are in another discussion.
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Permalink Reply by edahl on -
My pain specialists asked me which muscles hurt and that's how he chose where to put in the injections. The pain was in the trapezius muscles for the most part at that time, so that's where he put them. Within 2 days I could not hold my own head up when bent over. My muscles in front (Sternocleidomastoid) then seized up more than ever and decided to get in on the pain train. I have another month and a half until it wears off and then we can try different muscles. I wonder why an EMG was not done or he didn't check the muscles himself? Why let me guess where the pain was coming from? I live in Iowa and don't know how to find a Botox specialist as opposed to someone who did a two day session. I have an 8 week old baby at home and need to be in the best physical shape possible. I want to be able to hold her for more than a couple of minutes. Any suggestions?
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Permalink Reply by noelv on
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My wife's family is from Iowa. If you live in the eastern part, Chicago is home to prominent med schools and hence, teaching hospitals. On the west, you have the Mayo Clinic in Minnesota. A few calls and you can likely find a decent specialist. It's a haul but again it's 4 times a year plus the one consultation. Most of the neuros with experience will be at teaching hospitals like Chicago, Northwestern, U of Iowa, and you're pretty close to the Mayo Clinic. Make the phone calls and get your answers.
In my humble opinion, pain specialists have no business injecting Botox. They may tend to injct Botox where they would inject cortisone or otherpainkillers and from my experience that is not where the Botox should go.
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Permalink Reply by edahl on
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Thanks, it has been an endless search for doctors that can help. They all seem to think they can fix the problem and then they give up and I move on to someone else. I am so tired of guessing who to trust. I need to know the right questions to ask and I think this forum can help me. I am only 2 hours from the University of Iowa and was planning on trying that after one more round of Botox. I did feel really suspicious when the Doc was asking me where to inject. I thought, isn't there a thermoscan or some sort of test to decide which muscles to inject? Why rely on me? Besides just because the pain is in one place doesn't mean the cause of it is there. Right? I went to a neurologist (the pain doctor sent me to him to make sure it wasn't rheumatoid arthiritis) and he said, "Your head isn't tilted therefore you do not have dystonia. I don't know what this is, but Botox won't help you. Take vicaden as needed." I asked him what he though the problem was and he had no answer, but was sure that no one could help me. I cried for a week after that appointment. The pain doc disagreed with him and went ahead with the Botox. I am feeling new hope for the Botox if it can be injected in the correct place.
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Permalink Reply by noelv on
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My first neuro didn't even have Dystonia on his diagnosis form and it is rare so teaching hospitals are your best bet. I waited for all of the botox and pain meds and muscle relaxants were out of my system so they can see how I really am. There is good news with your situation, Botox is affecting you.
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Permalink Reply by edahl on
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It seems that many docs are unaware of dystonia or only think of it when a patient's head is stuck to their shoulder. I called U of I just now and left a message. I asked for the name of a neurologist who has the most experience with dystonia and best training with Botox. I told them not to bother sending me to someone who thinks dystonia doesn't exist in someone whose head isn't tilted. They will probably think I'm demanding and rude, but I need someone who will understand my problem. I'm not driving two hours to be told to go home and take pain killers. I wish I would have had the guts to do that long ago. Of course I had no idea what was wrong with me for over two years and most of my doctors still don't agree! Is there a list of questions to ask your doctor posted somewhere on the website? The Botox website has questions for the doctor to ask the patient, but not the other way around! I should ask:
How much experience do you have with dystonia?
How much training do you have with Botox?
How often do you do Botox injections?
Do you use EMG or other technology to find muscles to inject?
What other treatments do you use for dystonia patients?
Anything else or tweaking of these questions?
I will be sure to be off meds when I go to the appointment. That is a good suggestion as well. I don't take many meds because I am breastfeeding, so I mostly suffer through the pain anyway. I only take meds when I can't function at all.
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