Questions From the Fall 2010 Support Group Meeting
Respondents:
Yasser Khan MD, FRCSC
Stephen P. Kraft, MD, FRCSC
Questions:
- Would one of the doctors be able to tell me what they would say in a letter to CNIB for referral of their blepharospasm patients?
- I know about the form but what I specifically want to know about is E-Books. These are books that can be downloaded from the library and displayed on the screen and are easy to read. I just downloaded my first one and am very enthusiastic about it. I was hoping to show the CNIB my enthusiasm for these books so that they would offer a variety of these books.
- A patient who was not able to come today asked me to ask Dr. Kraft if he has ever come across acupuncture in connection with blepharospasm.
- Does anyone have a large collection of data obtained from BEB patients that shows that there are similarities or some co-relation, say, to diet, blood work and other medical indicators, in order to see if there is some consistency between people and determine what the cause may be?
- Would there be a connection between what you just explained, and, the neuroplasticity of the brain where we can train ourselves if there is something wrong? Since no two patients are the same would this still be possible?
- Have there been any advances with the procedures involved in myectomy?
- Can the screws be removed?
- Dr. Khan, if you were to consider doing the titanium screw procedure what would you need to know or what steps would have to happen before considering to start such a trial?
- The surgeon also wants to make sure that sensory tricks actually work for you because if they do not the screw operation will not work. Is that correct?
Q. – Would one of the doctors be able to tell me what they would say in a letter to CNIB for referral of their blepharospasm patients?
Dr. Khan:It is really dependent on what each patient's complaints are because each patient has varying levels of disability. So, it is very specific as to what they may want. I have written some forms for my patients requesting such aids as glasses or specific lenses along with their concerns about lighting so that they may continue to read. It is quite simple for the doctors because the CNIB has a very simple form to fill out and fax to them.
Q. – I know about the form but what I specifically want to know about is E-Books. These are books that can be downloaded from the library and displayed on the screen and are easy to read. I just downloaded my first one and am very enthusiastic about it. I was hoping to show the CNIB my enthusiasm for these books so that they would offer a variety of these books.
Dr. Khan:We have the CNIB forms in the office and when a blepharospasm or any patient that is "visually" disabled tells us of their specific needs we fill out the form, sign it and then fax it to the CNIB. In your case, for example, we would fill in your profile; your vision, the extent of your disability and various facts about your condition along with your need. We sign it and fax it to the CNIB. They then contact you or you can contact them.
Q. – A patient who was not able to come today asked me to ask Dr. Kraft if he has ever come across acupuncture in connection with blepharospasm.
Dr. Kraft:There have been a lot of non-medicinal treatments, such as biofeedback, herbal therapies, and the latest acupuncture. Acupuncture, like a lot of other things, helps some people and does not help others. Studies show that it has no added relief when compared to no treatment at all.
While it helps people with other ailments there is no scientific proof that it helps BEB patients. In cases where people claim that it has helped somewhat we do not know if that is the"psychological factor". There are no long-term studies showing its benefits. There is no harm in trying it by a qualified practitioner. Biofeedback was tried for many years before Botox and it was not that successful—it helps some but not the majority.
Dr. Khan:It is an interesting question. I am actually meeting with a qualified acupuncturist to attempt a study, which hopefully will determine the efficacy of this treatment. Acupuncture does work for a lot of ailments and there is a lot about the body that we just do not know, as there is a lot that we do not know about blepharospasm.
I am meeting with the qualified acupuncturist who is very interested in doing something in this area. We are trying to develop research where we can get a proper study going where we will have patients that get the acupuncture injections almost in the same injection points as those for the toxin. We will then compare that to BOTOX® to determine if indeed it does have an effect.
As with any of these non-traditional therapies, I personally do not recommend any patients stopping their traditional treatment. I believe that non-traditional therapies may add to medical care and are very important part of it. Traditional therapies should not be replaced by these others. However, I do not exclude looking at this question in a formal research project and I am actually working on that now.
Dr. Kraft:You can take any kind of illness and go on to the Internet and you will find someone who states that he or she has benefited from some non-traditional therapy. But, in reality, the only way you can know if this is true is to use the scientific method. This means that you compare the proposed non-traditional treatment to the traditional treatment or to no treatment whatsoever. What is considered to be the strongest evidence is to take people with the disease, treat them with the proposed non-traditional therapy, and compare it to another identical stream of patients who were either treated with the traditional therapy or had no treatment at all.
You then compare the results of both streams and then you will know if therapy actually works. This is what Dr. Khan is saying. Currently we do not have this kind of scientific study for acupuncture that allows us to determine the actual results and, if examined properly, we may have an answer to this question sometime in the future.
Q. – Does anyone have a large collection of data obtained from BEB patients that shows that there are similarities or some co-relation, say, to diet, blood work and other medical indicators, in order to see if there is some consistency between people and determine what the cause may be?
Dr. Khan:As far as I know there is no co-relation. They have done, since the medical community has been aware of this condition, epidemiological studies, and, as far as I know, there is nothing to say that there is a direct link to diet, genetics, or environmental stimuli and things like that. There is some thought but nothing is concrete.
Age seems to be a factor. As we get older it becomes an aging factor. It is more common as we get older but then what is not. There are younger patients; some as young as 40 years of age.
Dr. Kraft:I have seen some patients younger than 40. As far as bio-chemical markers nothing has come out from the many studies. From the neurological side people like Dr. Yankovic have looked at the bio-chemical markers such as selenium, magnesium or the relation to the thyroid, and, to be honest with you, as of 2010, I have not seen anything that suggests any one item, separate from the genetics: except that it is predominant among the 40, 50, and 60 year age group.
However, the literature is showing that there are about five different neurologic pathways for the eye blink. People have looked at the force of the eyelid and looked at Magnetic Resonance Scanning (MRI), known as functional MRI scans, and, they can actually see the area of the brain that is active in various actions such as eyelid spasms. It is all over the map; six or seven different brain areas light up but they are not the same in any two blepharospasm patients. Some of the areas that light up are the same as those for non-blepharospasm patients. So we know that some areas of the brain are hyperactive and some may be under active but there is no consistency.
I have been taking BOTOX® treatments about every three months for cannot take five BEB patients and find the exact same area of the brain like you could with another disease. In Parkinson's disease, for example, where they know exactly where the problem is and, they have neurological conditions, for severe cases, where they can actually target it.
Q. – Would there be a connection between what you just explained, and, the neuroplasticity of the brain where we can train ourselves if there is something wrong? Since no two patients are the same would this still be possible?
Dr. Kraft:You cannot guarantee that they would be the same because there are four or five different pathways. You do have patients who have the same pathways involved when you check them. What I am saying is that you cannot look at that patient to say I know which area of the brain is yours. But, they do tend to group themselves.
Nevertheless, you are right. There are two aspects to it. You can train yourself to overcome it by involving other areas of the brain. This is what is called biofeedback: you are trained to recognize the symptoms and try to employ tricks to overcome it. This was done some 30 years ago and it does not seem to be too helpful it worked for some and those, probably, were the ones that could be trained but it did not work for the majority.
Q. – Have there been any advances with the procedures involved in myectomy?
Dr. Khan:Not really. However there is a surgeon in Boston who uses titanium screws and has claimed to have some success. The procedure is done in an operating room. He implants the screw right above the eyebrow and claims that it potentially disrupts the signals to the eyelids. He has some success with this and he has given one lecture on it.
It is a very tiny device and the procedure is done under local anesthetic. It is not a very invasive procedure. I am looking at it very cautiously since some of my patients have inquired about it. The jury is still out on this, and, he is trying to collect more patients to do a study in a scientific manner.As far as myectomys go, people still prefer the partial myectomy. There is strong evidence from multiple studies that, although not conclusive, doing any kind of surgery on the eyelid can improve the effect of botulinum toxin on the eyelids and blepharospasm.
Q. – Can the screws be removed?
Dr. Khan:They are inert so they can be removed. Lots of people have screws, nails and other things in their bodies and they are fine.
Q. – Dr. Khan, if you were to consider doing the titanium screw procedure what would you need to know or what steps would have to happen before considering to start such a trial?
Dr. Khan:First of all, for me personally, it would have to make sense from a surgical point of view. It would have to be safe for the patient and there would have to be evidence that the procedure does work.
The next step would be cost. Would such a procedure be covered? Would the cost of the screw or device be covered? In fact you would have to verify with Health Canada that the device is allowed. Health Canada has a list of approved devices and, if this one is not on the list, permission, under the rules of research would have to be obtained.
I am keeping an eye on it because there is a lot of interest and purportedly good results. At the moment there is only one physician that is doing. You always worry when one surgeon is doing it and all the results are his. As I say I am keeping an eye on.
Q. – The surgeon also wants to make sure that sensory tricks actually work for you because if they do not the screw operation will not work. Is that correct?
Dr. Khan:Yes that is correct. The other interesting thing is that he has not been to many conferences or has written much about it. So, I have received my information from my patients who have actively been following this on the bulletin board. So far everything I know about it comes from my patients. Nevertheless, as I say, I am keeping an eye on it.
Dr. Kraft:This organization, BEBCRF, funded a study that I did with Dr. Gill. If you recall Dr. Gill who has been coming here from time to time, is one of our Residents. Upon completion he will go to California to do a two-year ocular plastic Fellowship, that is the specialty that Dr. Khan has been through, and, it is unlikely that he will be coming to these meetings for some time.
Dr. Gill and I collaborated on a study, which was funded by BEBCRF, to go back and look at what happens after you have gone through 30 or more treatments. Nobody has looked at what happens to those of you who have undergone the injections over a lengthy period of time. We looked at the intervals, the success rate and the efficacy of the injections.
Our research has been accepted by the Canadian Journal of Neurological Sciences, the premier neurologic journal in Canada. The paper received rave reviews as something that was really needed. You, as members, should be proud for having donated to fund this important research.
We collaborated on the study, which was funded by BEBCRF, to go back and look at what happens after you have gone through 30 to 50 treatments. Nobody has looked at what happens to those patients who have undergone the injections over a lengthy period of time in regards to success rate and the efficacy of the injections.
We are talking about age-related issues in connection with BEB. In Hemifacial Spasm we know what the problem is and the age of onset can vary from 20 years of age onwards. In the HFS patients, after 30 or 40 injections, the interval for relief seems to be consistent. So, if during the first four or five treatments you are coming every 3 to 4 months you will probably be doing that over the next 20 years.
Over time with BEB patients, all seem to get some relief but about 25 - 30% need an increase in the dosage at some point in their treatment, and, the length of the interval between injections decreases somewhat. The decrease is not much: from treatment 1 to treatment 40 you lose about one week of duration. Therefore, if your treatment was every 13 weeks in the beginning by treatment 30 to 40 it may be every 12 weeks. The treatment is still effective and the side effects do not seem to be worse the longer you are treated.
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