(Ed. Note: Much has been written and discussed in the medical community about the proper procedures of injecting Botox (A) or Myobloc (B). Is palpation best.or is the EMG procedure better? What muscles should be injected? How often should you have an injection? Well. in conjunction with our medical advisor, Dr. Jim Auberle, we hope you will find the following questions and answers to be a big help in solving some of the mysteries. Please bear in mind these will be our views; your doctor, or other doctors, may have differing views, but this is good, as discussion is much needed if we are to be helped. Should you have any questions, please let us know so that we can ask the experts. Howard Thiel).
Q: Dr. Auberle, how long have you been injecting patients with ST? How many patients would you have injected?
A: I started injecting Botox in the latter half of 1990. Prior to that I had been doing injections during my residency with phenol about five years earlier. In 1997 we started recording patients' and injections in a database. Since then we have about 600 different patients listed there. Starting in early 1997 until now, the database allows me to keep many different statistics on what we inject, how much and when. I have done about 1,600 injections since starting those records. The vast majority of patients have been those with torticollis but some have included the limb dystonias, a few hemifacial spasms and spasmodic dysphonias as well.
Q: What procedure do you prefer and use and why? Palpation? EMG? Would you explain briefly each method.
A: In a palpation technique the physician injector simply uses the knowledge of anatomy of the human body and their own personal touch to determine where they are going to place an injection. The theory here is that muscles that overwork themselves become larger. A bodybuilder exercises his muscles to get bigger just like many dystonic muscles get bigger. I believe that there are some problems with just palpating. First, not all muscles that are large are participating with the dystonic process. Secondarily, there are deeper muscles of the neck that simply cannot be palpated. The EMG technique goes further. One can see and hear the muscle firing. It eliminates the guesswork. The overall procedure becomes more quantifiable.
Q: You also inject phenol. Would you explain what this is and how does it differ from botulinum toxins? When would you use it and why?
A: Phenol is a chemical as opposed to one of the botulinum toxins which is a complicated protein. Phenol destroys just about every thing in its path without regard whether it is a nerve, muscle or any other structure. In the past, we wanted a treatment option for those patient's who became resistant or developed antibodies to the Botox (A). Now we also have Myobloc (B) as an alternative treatment.
Q: There are some doctors who inject many patients and use the palpation method, many of them well known. Why in your estimation, do they do this? Are they missing muscles with the palpation method?
A: Quite frankly I personally do not trust the palpation technique. All that one must do is simply listen or watch an injection that demonstrates no muscle activity and then movement of a needle just a few millimeters to hear some raging electrical discharges to understand that there may be some significant technical issues to the injections. There is absolutely no way to palpate the deeper muscles of the neck. The benefits to the injections are that they take less time without the EMG. These days in medicine time is money.
Q: There are different types of EMG machines .what are they and which do you prefer? I know from our previous discussions and from my own experience that different muscles can be detected with different EMG machines and/or procedures e.g. placement of the needles?
A: There are EMG machines that have no screens and act as stereo sound amplifiers. Most EMG machines have some sort of screen or computer panel where the waveforms can be watched. This is helpful because often there are telltale changes on the screen that suggest that further manipulation of the needle may get one closer to the active dystonic reaction. Several EMG machines are multi-channel allowing the opportunity to record from several different sites or muscles at the same time. These are good for attempting to identify different patterns of muscle involvement that participate in the dystonia. Multiple channels means multiple needle sticks/pokes.
Q: Now that we've established the procedures, let's move on to other questions. Do you inject Botox(A) or Myobloc (B)? Do you have a preference? Does the type of torticollis determine which is used?
A: In my practice, I'm relatively conservative but we inject both types of botulinum toxin. I have being injecting Botox (A) for the longer time and feel very comfortable with it. Myobloc (B) has only been available for about a year now. As time goes on I'm sure we will develop the same degree of comfort with Myobloc (B). I feel that we are still learning the best ways to use botulinum toxin (B). Each has some advantages and disadvantages. However, I cannot say that I have a particular preference. To my knowledge, there is no information available to say that a particular type of torticollis responds to a particular type of botulinum toxin. (Ed. Note: Professor Edward Schantz, one of the 2 developers of Botox, explained years ago that Botox (strain A) was picked at that time because it had the most toxicity associated with it).
Q: There are four basic types of torticollis - laterocollis, retrocollis, rotational, and anterocollis. Which type of torticollis responds to botulinum toxin A or B the more frequently? .least frequently?
A: I don't think we can say at this point that a particular type of torticollis responds to a particular botulinum toxin. I will however comment that the anterocollis are usually the most difficult to treat.
Q: How much of A or B would you use for the above? What is your maximum amount you would inject. Some doctors use more for anterocollis, do you?
A: Most patients routinely receive somewhere between 200 and 300 units of Botox (A). The maximum I personally have used has been 400 units on a resistant patient with severe torticollis. However, with some other situations of spasticity I have gone as high as 700 units. For Myobloc(B) we're still feeling our way but average would be 5,000 to 13,000 units. For anterocollis if I use a relatively large amount I will alternatively inject the SCM's. One SCM this time and the other is injected next time.
Q: What do you recommend the minimum period to be between injections?
A: I subscribe to every three months a minimum time between injections. On some occasions, we will shorten that to about 10 weeks. However, the insurance companies have started to monitor this and will only allow every three months in most cases.
Q: For people with segmental dystonia, truncal dystonia or a fixed contracture, will either toxin work as well? Please explain each of these. If the toxins won't work, is phenol a viable substitute?
A: For any situation where there is overactive muscle activity e.g. dystonias, spasticity, twitches, tics etc., the botulinum toxins will work. The only example where it will not work is if there is a fixed muscle contraction. This is a situation where the muscle has been replaced by thick fibrous tissue. The botulinum toxins only work at the connection of the nerve / muscle. No muscle means no nerve which means the botulinum toxins will not work.
Q: What are the main muscles that are injected? Any secondary muscles?
A: The most frequent are probably the SCM, trapezius, and splenius capitus and longissimus capitus. Any muscle that I can reach with a needle is fair game.
Q: Do the muscles vary in the different forms of ST or do injection sites vary?
A: The answer to this question strikes at the very heart of what a
physician should do when performing injections. In the various types
of ST the pattern of individual muscles involved can vary a great
deal. Let's take an example of a Right looker. For some Right
lookers the major muscle involved may be the Left sternocleidomastoid
muscle (SCM). For other Right lookers, the SCM may be very quiet and the more active muscles would be the Right splenius capitus and /or
the Right longissimus capitus. In my opinion, the best way to
determine this is by EMG. At various times we have found that individual muscles may act in independent ways. For example, a big
muscle like the trapezius may have "hot" spots where muscle activity
is greater in certain portions of the muscle. This can even lead to
certain muscles performing certain types of activity in different
forms of torticollis. Let's go back to the SCM for a moment. The sternal portion of the SCM participates in the rotary form of ST but the cleido portion of the SCM particpates in the lateral form of ST. Depending on which is more active or participating in controlling neck movements is the one I treat. In most regards, in treating the SCM we inject in the posterior cleido portion to avoid any swallowing problems. However, I've been known to break my own rules to get a better result for a patient if I hear that something is just not working.
For a Right looker:
Left SCM
Right Splenius capitus
Right Longissimus capitus
Perhaps several others
For a Left looker:
Right SCM
Left Splenius capitus
Left Longissimus capitus
Perhaps several others
For retrocollis:
Both Splenius capitus
Both Longissimus capitus
Both Trapezius
Both Semispinalis capitus
Perhaps several others
For anterocollis:
Both SCM
Perhaps several others
For laterocollis:
Same side trapezius
Same side SCM
Same side scalene
Same side longus capitus
Perhaps several others
Q: When you inject do you primarily inject on the side which pulls? Or all around?
A: I personally do not understand the "all around" method of injections. First, we need to identify the muscles involved. However, there are often typical patterns of muscles involved. It is helpful to know which muscles are stronger than others. It is also helpful to understand the mechanical stress that the muscle contractions cause in the neck.
Q: When a muscle is injected, what in theory is supposed to happen?
A: The botulinum toxin of choice starts to travel to the "motor point" where the nerve and muscle talk to each other. Depending on the particular botulinum toxin it will infiltrate this area and start to cause a disruption in the normal flow of electrical signals that cause a muscle to contract. If successful the muscle may get smaller in size or atrophy.
Q: How much do you inject in a given muscle and do you inject at various locations on any given muscle? How do you determine how much is to be injected? Can you over-inject a muscle?
A: For the most part the decision on how much to inject is a guess. It depends on a certain degree of experience, the size of a muscle, how much activity is heard on the EMG, how much the particular muscle is participating in the overall pattern of dystonia. A good deal of this is the "art" of medicine. A muscle can be over-injected, but in the long run virtually the entire botulinum toxin is metabolized and the muscle will return to its previous size and strength.
Q: Some doctors tell their patients that muscle activity can move from one muscle to another. Your thoughts?
A: The muscle activity does not literally move from one muscle to the other. Treatment with any chemodenervation process is circumventing the problem which causes the torticollis which we are still attempting to understand. However, after a period of successful injections, the dystonic process may recruit other muscles that may not have been originally so involved.
Q: It has been said that too much toxin injected in the sternocleidomastoid (SCM) muscle causes swallowing problems. Why is this able to occur? How much should be given?
A: Again, the amount varies depending on circumstances. However, despite best efforts some botulinum toxin will "leak" out and affect other regional muscles, usually smaller muscles of the eyes or throat.
Q: Does the size of a person's neck determine how much botulinum toxin should be given e.g. man versus woman?
A: Yes, all those factors should be considered in determining the amount to inject.
Q: I've been getting injections of Botox(A) for 14 years at 200 units every three months. I've been reading lately some doctors are saying the longer you go the more chance of antibody buildup. Your thoughts?
A: Determining the effect of antibodies to botulinum toxin is tough to understand. There are patients who have antibodies who continue to receive benefits from the botulinum toxin. There are many others who the botulinum toxin seems to have stopped working and yet they have no antibodies. It appears that the overall "load" may be very helpful to help understand their development. If frequent injections of large amounts of botulinum toxin are given, then it is quite likely that antibodies will develop just like we immunize our children to bad diseases of childhood. The best thing to do is to keep the dosage as small as possible to get a good clinical effect and to stretch the injections as far as possible to continue some comfort.
Q: Some patients are injected by different injectors each time they go in for treatment. Is this good?
A: I personally don't think so. It may take me as long as a year to start to understand a person's torticollis especially if it is complicated. If different injectors participate it will probably take much longer. Meticulous records such as we keep in the database are a must under those situations.
Q: Now, as to antibodies and primary non-responders, please explain what each is?
A: No matter what sort of infectious agent causes any kind of widespread disease e.g. anthrax, West Nile Fever, etc. there are people that will be naturally immune to the effects. Those individuals who are naturally immune to botulism will be our primary non-responders. The secondary non-responders are like our children who become immune to a particular disease by receiving immunizations. These individual start to produce a neutralizing antibody that inactivates the invading toxin.
Q: In your mind, is there such a person as a primary non-responder, especially people with just laterocollis, retrocollis, or rotational forms of torticollis? Could it be the fault of an inexperienced medical person missing the "target"?
A: Regardless of the type of torticollis, poor injection technique and poor management of botulinum toxin amounts can lead to poor results. It also can result in the second or third injector not having a good response even with better technique.
Q: As to antibodies, I presume the only cause of this is too much toxin? I've heard of doctors injecting 400, 500, or even 600 units of botulinum toxin A. Isn't this too much? Wouldn't this lead to antibodies? What is a good test for antibodies?
A: As stated earlier, the more medicine, the more frequent the injections, the more likely one is to develop antibodies. A company called Athena Diagnostics has an assay to estimate the number of antibodies. This is a simple blood test but can take many weeks to get the results back.
Q: Last question, a woman ST'r told me recently that the Botox (A) injections weren't working and then tried Myobloc (B) with a different doctor and she improved. I would wonder whether the correct muscles weren't injected with the Botox (A) by the original doctor. Any thoughts?
A: Both are possible. The first injector may have had poor technique or the patient could be resistant to the Botox (A). With a good response with the Myobloc (B) and a second injector, there is nothing to stop her from asking the second injector to try a series of injections with Botox (A) to determine if it was more technical issues or medicines.
(ED. Note: I would like to add the "close" to Dr. Auberle's article. It relates to my own experience with botox. My symptoms, before botox, had been extreme pain, undue amount of pressure in my head as if it was going to shoot off rockets, burning sensations and pulling of my head to the shoulder. I lived that way close to 10 years. I received my first botox injection in January, 1988 and the pain, pressure, and burning sensations disappeared immediately. The pulling persisted for 4½ more years and was aggravating, to say the least. The doctor I was injected by had always used the palpation method. I finally decided to see Dr. Carlos Arce of the University of Florida to determine if I should have the selective denervation surgery and made arrangements to visit with Dr. Arce for a consultation type visit. It was the most interesting, informative visit I've ever had and has been the deciding factor in finally ridding myself of at least 85% of my ST symptoms.
I was given a complete EMG reading and it was found, as it is with most ST'rs, that much of my muscle activity existed in my lower trapezius. He also determined that I was not ready for the operation as I had too much botox yet in my system, but he did say that if I stayed with botox I should also be injected in the lower trap; that, specifically, that area would be, for me because I was pulled downward to the left, an area out towards the shoulder. To define it better, if I loosely lay my right hand on my left shoulder, where my middle finger rests is where I receive some of my botox. My pulling, after I went back and had another injection, stopped immediately. That was 1993 and I have't had any pulling, or any of the other symptoms since then. I would caution you to check with your doctor, however, first, as your type of torticollis or your muscle activity may be different than mine. I have laterocollis. I hope all of what Dr. Auberle and I have said here helps. If you have questions, please advise. Howard Thiel).
