Questions From the Spring 2005 Support Group Meeting
Dr. Jeffrey Hurwitz
Dr. Martin Kazdan
Dr. Stephen Kraft
Dr. Noelene Pang
Yolanda Rubinsztan (Allergan Representative)
John Walmsley, PhD.
- What can you tell us about the “rods” often used to help raise the eyelids and why are they made of silicon?
- Has there been or will there ever be a benefit of doing a study of those patients who have gone into remission, and, do you think it may have something to do with a possible alteration of the seventh cranial nerve?
- Are BOTOX injections effective for cervical dystonia or in my case torticollis?
- It seems to me that there are many causes of BEB We are told it is the seventh cranial nerve. Is that able to be x-rayed in the beginning?
- I do believe that the seventh cranial nerve is involved since I have MS and feel that this may have possibly damaged this particular nerve.
- How do you know how often you should give the patient BOTOX injections? Is it strictly on the say so of the patient?
- If this danger of immunity exists, how valuable do you think that a patient’s subjective input is? What happens if one is a chronic complainer?
- My mother, who is a patient of Dr. Kazdan, has had BEB for the last 15 years and is an avid tennis player. Three years ago she suffered a brain aneurism. Given that current belief is that BEB is centred in the brain, could there be any relation between these two occurrences?
- We discussed what a patient could do about the failure of reimbursement regarding BOTOX injections: they can contact Allergan. What about patients that are denied myectomies by doctors? I suppose they can contact the Foundation for assistance but, why is there a problem with OHIP? Is it due to a procedural error, like the wrong box may be ticked off?
- Has anyone ever filed an application for a Canada Revenue Disability Tax Credit for BEB?
- My family have epileptic seizures. Does this have a relationship to what I have considering that both have spasm and so on?
- I find that when I'm wearing glasses or sometimes concentrate while reading there is a lot of spasms around the nose and brow area.
Q. – What can you tell us about the “rods” often used to help raise the eyelids and why are they made of silicon?Dr. Hurwitz:
The idea of using the brow to control the spasms originally used muscle tissue from another part of the body, which were shaped like “rods”. This procedure is known as a frontalis sling. However, it was noted that these organic rods became part of the tissue located around them and did not work as first intended. Dr. Crawford came up with the idea of using silicon rods, which do not blend into the body, to keep up the eyelids up. The rods appear to be successful so far.John Walmsley
John stated that his BEB was corrected by a limited myectomy, performed by Dr. David Jordan, since the BOTOX injections appeared not to work anymore. Because of his apraxia Dr. Jordan fitted him with a frontalis sling (silicon rods) and he has been fine ever since. He had to return to Dr. Jordan once to correct the ties on the rods. He does not know how many of these operations Dr. Jordan has done but he knows that he definitely was not the first patient.
Q. – Has there been or will there ever be a benefit of doing a study of those patients who have gone into remission, and, do you think it may have something to do with a possible alteration of the seventh cranial nerve?Dr. Kraft :
It would be difficult because most of the patients have dropped out of our practices. If you could contact these patients it might prove to be a good comparison: measure the force-generation of current patients versus that of those in remission. One would suspect that the overall force-generation would be down.
Many patients do have remission as we have been told over the years of practice. We also know, in the case of HFS, that neurosurgery can correct the problem by separating the blood vessel and the seventh cranial nerve so that they no longer touch. This then causes the spasms to cease and it is anatomically explainable. However, all we readily know about BEB is that it is a multi-faced disease, and, since the cause is yet unknown, it would be more difficult to explain.
Q. – Are BOTOX injections effective for cervical dystonia or in my case torticollis?Dr. Kazdan:
He admitted that he used it on the few torticollis patients that he had. Injections were mainly in the muscles of the neck. He injected those muscles where he had access to the nerves.
Q. – It seems to me that there are many causes of BEB: you could have a pre-disposition, undergo surgery and wake up with BEB, and, medication can cause various forms of dystonia. One of our members present has been in remission for the past two and a half years. To find out what caused the remission you would need to know what caused the blepharospasm in the first place.
We are told it is the seventh cranial nerve. Is that able to be x-rayed in the beginning? It has never been suggested to me to find out what it looks like, what it is supposed to look like, or, why it does not look like that.Dr. Kazdan:
BEB does not actually depend on the nerve that controls the facial spasms but it actually comes from the brain itself: more specifically the area that we call the grey matter. Scans of the brain have shown that the spasms show activity in this area. Nevertheless, we still do not know the cause of BEB.
Q. – I do believe that the seventh cranial nerve is involved since I have MS and feel that this may have possibly damaged this particular nerve.Dr. Kazdan:
That is an interesting observation. I am sure that you have had several MRI scans to show the areas involved and maybe there is some pathophysiological connection..
Q. – How do you know how often you should give the patient BOTOX injections? Is it strictly on the say so of the patient?Dr. Kraft:
We know, in general, that BOTOX lasts about three to three and a half months at the nerve junction. I try to have patients come every three months but beyond this period I leave it to the discretion of the patient. Beyond the three-month period, the life span of the drug varies patient by patient: some go as high as six months before their spasms return.
Dr. Kraft has patients who have reached the maximum dosages and, for some time now, many of them cannot reach the standard three months watermark anymore. They do get responses and maybe because of antibodies they can last less than three months. Alan Scott’s original studies looked at the efficacy of injections at two and a half months, and, found that they still worked and for a number of years after they had been adjusted to fit this new schedule. Dr. Kraft has patients that fall in this category.
Most doctors will treat, if possible, no less than three months because they don’t want to risk the chance of having the antibodies build up so high that they injections have to be repeated more frequently. This is probably what is happening to those who are at the very high-end of the dosage scale.
Q. – If this danger of immunity exists, how valuable do you think that a patient’s subjective input is? What happens if one is a chronic complainer?Dr. Pang:
We will need to hear from the patient because we don’t know at what point he or she can react to the BOTOX injection, for example. We have no way of knowing at what point the patient will start to become immune; at what dose and after how long. It is still an unknown. All we can do is follow some basic principles: not too frequent and not too much.Dr. Kraft:
Another thing that has to be taken into account is the patient’s age and job requirements. If the patient has to work, for example, as an accountant, then he or she cannot have his or her eyes constantly close. These people may have to come in for injections more frequently than someone that is retired and to whom eye-closure is not that important to their daily functioning.
Q. – My mother, who is a patient of Dr. Kazdan, has had BEB for the last 15 years and is an avid tennis player. Three years ago she suffered a brain aneurism. Given that current belief is that BEB is centred in the brain, could there be any relation between these two occurrences?Dr. Kazdan:
I do not believe there is one. An aneurism deals with the arteries and their swelling to the point of rupture. BEB may be related to the grey matter area of the brain.Dr. Kraft:
He reminded everyone that in the past Allergan Canada was very instrumental in helping patients, who were getting BOTOX injections, have their claims paid by the various insurance companies. In fact, Jason Herod, formerly with Allergan, was a guest speaker at one of our meetings and he emphasized this very point, and, extended the offer to all of the members who experienced this financial difficulty.Yolanda Rubinsztan:1
With more and more BOTOX being used in the various areas; cosmetics, blepharospasm and dystonia, this can increase the confusion at the reimbursement area. When we have the situation of something that is “on label”, that is, it has been used for over ten years in Canada, it should be covered by most third-party drug plans but, not by OHIP if you are under 65 years of age.
If you are in a situation where, for some reason, you are no longer covered, or, you cannot get covered, Allergan has hired a reimbursement team to help you sort out this type of problem: mainly due to the growth of the drug. Please call 1-800-668-6424 and ask for your local Allergan representative (Toronto, GTA, Tri-City, etc.) and tell them about your problem. They want to know about this because they are constantly lobbying third-party insurance companies as well as each provincial representative that looks into these types of problems regarding reimbursement claims. Allergan feels that this is important and that it will be quite beneficial to you.
Q. – We discussed what a patient could do about the failure of reimbursement regarding BOTOX injections: they can contact Allergan. What about patients that are denied myectomies by doctors? I suppose they can contact the Foundation for assistance but, why is there a problem with OHIP? Is it due to a procedural error, like the wrong box may be ticked off?Dr. Kazdan:
All myectomy operations are denied by OHIP: they simply do not pay for them.Dr. Hurwitz:
I have not done this operation in a long time but I do know that there are people here in Toronto performing this operation. But I can tell you that years ago we spent a lot of time writing letters to the Ministry of Health, there is a medical adjudicator at the Ministry, and we got nowhere.
When we did these operations years ago, we did only the most extreme, extreme cases because this procedure was major surgery. In all of those operations we had to do something to lift the lids up because you cannot strip the muscles without concern for the eyelids. In these operations the surgeon got paid not for the myectomy but for the lifting of the eyelids, which is a procedure covered by OHIP. If the procedure is covered by OHIP then the hospital got paid including the anaesthetist you always had on hand. In other words, the surgeon ate the cost of the myectomy, which he did for the benefit of the patient, and everyone else was covered by OHIP.
Now, in the case of a limited myectomy, there may be no need to lift the eyelids, so it is difficult to have the operation paid for by OHIP. It is not the one doctor and patient that is the problem but rather the inability to get the procedure listed by the medical adjudicator. The problem today is that more and more procedures are clamouring to get listed: many of them do get listed but we have never been able, despite our Herculean efforts, to get this procedure listed. Currently OHIP is looking to de-list many of the existing procedures rather than adding to it.Dr. Kraft:
There is a central tariff committee within the Ontario Medical Association (OMA) that deals with government in terms of setting fees for the various procedures. The first thing that has to be done is file an application with the tariff committee of the specialty in question, namely Ophthalmology. That representative would then take the submission, prepared by the specialists in this field and who feel that this code is medically important enough to be covered, to the central committee where there are about sixty to seventy specialties all competing to get their specific codes added on. In most cases this does not work very well because the government only allows a certain number of increases to be added each year.
The committee will only work with a certain number each year. There are submissions from years and years ago that make up this list and, as of yet, have not been accepted by the government. It is a very difficult process and I know that Ophthalmology was going to try to submit certain areas that have been significantly under-funded for the past several years and they were refused, once again, this year. The next opportunity, possibly in 2008, may well be with a change in government and the current Ministry administrators.
It would not hurt to start the process now and re-invigorate it; maybe with a whole new set of administrators, different from the ones that were there fifteen years ago, the petition might get through. Keep in mind that it is a very long and arduous process. Also one must be aware that there exists within Ophthalmology itself a large number of requests competing against each other (retina, glaucoma, etc.) and, then you would have to compete against all of the other medical specialties (neurology, cardiovascular, GI, etc,).
Within the medical community this is an extremely competitive arena where one must be forceful yet have the patience of Job to get what they want.
Q. – Has anyone ever filed an application for a Canada Revenue Disability Tax Credit for BEB?Dr. Kazdan:
He recalls helping a patient fill out one several years back and, if memory served him well, it depended on how severe the blepharospasm is, and, ultimately, the response of the board reviewing the application. In other words, the process is not easy and a lot depends upon making one’s case as adequately as possible.
Q. – My family have epileptic seizures. Does this have a relationship to what I have considering that both have spasm and so on? Is there anything at all related to BEB? Also, is there the possibility for me, because I have what I have, to eventually get what they have?Dr. Kraft:
As far as we know there isn't any relationship. The only thing I can tell you is that by coincidence a couple of the medications that work for blepharospasm are also medications that are sometimes used for seizures, but it does not mean that what you have is related to or is a seizure. It just happens that the biochemistry that is changed by some of these drugs and the biochemistry causing the blepharospasm is the same type of chemistry that has gone wrong. It doesn't mean that the two diseases are at all related. As far as we know they are independent of one another.
Q. – I find that when I'm wearing glasses or sometimes concentrate while reading there is a lot of spasms around the nose and brow area.Dr. Kraft:
I have a number of patients whose spasms come from a central focus: the central part of the face is one of the trigger areas that seem to be predominantly involved. These areas can be injected. If you are not getting Botox injections for it, you can ask the doctor to concentrate a little more in the brow area and just beside the nose.
I have one woman I know that started coming to me about three years ago who had a very sensible predominant brow ache and nasal kind of twitch right along the central part of the face. We customized a little extra site in the brow and in the nose area and she did very well. Again, you customize it individually. Ask the doctor who is treating you to place some judicious injections along the areas mentioned. You have to be very careful because you're near the eyelid, so, as long as it's kept in the nasal area and the muscles that come down the nasal area, you can bias the dosage concentrations towards that and hopefully make your particular problem a little bit better.1. Allergan Represntative for the GTA in 2005
BOTOX® is a registered trademark of Allergan Corporation