Fall Meeting Notes, 2004
Guest Speakers John L. Walmsley, PhD.
Dr. Walmsley began his talk by thanking Dr. Kraft for a very kind introduction. He went on to thank Fred Martin for inviting him to speak, and the Foundation for organizing the meeting. John went on to thank, in advance, the audience for their kind attention. He concluded his opening remarks by saying “If some of you close your eyes during my presentation I'll completely understand and I won't be offended.”
The problems with his eyes began in December 1996 (John was 53 at the time) with a dry-eye condition and blinking. Within a few months he was experiencing involuntary eyelid closure, which became more pronounced as time passed. In February he saw his family doctor (Dr. Sonia Kurtz) who diagnosed dry eyes and referred him to Dr. Hugh McGowan, an ophthalmologist. Dr. McGowan diagnosed secondary blepharospasm due to the dry-eye condition. Between February and October different types of eye drops were tried. Collagen plugs were also tried. They lasted for a few days and then dissolved but did not resolve the eyelid closure problem.
About August 1997, Dr. McGowan suggested the possibility of benign essential blepharospasm. “And he even spelled it out for me” continued John, “ so I could search it on the web. Immediately I found the BEBRF website and essentially I diagnosed blepharospasm myself.” At about the same time, a colleague who worked with John contacted Bob Campbell, who lives in Sault-Ste.-Marie and, as it turned out, is the BEBRF (US) web-master. Bob was a patient of Dr. Kraft and he recommended that John see Dr. Kraft and examine the possibility of getting botulinum toxin injections. In September of that same year and before he was referred to Dr. Kraft, John had begun keeping and monitoring a daily record of his eye condition. At the same time he asked Dr. McGowan to refer him to Dr. Kraft. He first saw Dr. Kraft in November 1997, and he began BOTOX® treatments at that time.
“This [left side of Figure 1] is the beginning of September 1997. [The right graph, Figure 2, shows the same information beginning September 1998.] These vertical lines [at the bottom of both diagrams] are the beginning of each month thereafter, for the first and second full years. The vertical marks at the top of each diagram indicate the time of treatment: BOTOX® or surgery,” explained Dr. Walmsley. “And I came up with this [right side of each diagram] subjective rating, a scoring system, 10 being perfect, 9 being very good, 8 good, 7 fair, 6 poor, and 5 awful. And I left room below for possibly getting even worse than that.”
Fortunately, he did not need to go below 6 or 5 most of the time. With the use of graphs, John monitored his condition. His first BOTOX® treatment began in November 1997, and within a week after there was some improvement (refer to Figure 1). But it only lasted for about three weeks and he had to top up the injection. The first injection was 60 units (30 around each eye) and then Dr. Kraft gave him a top up of 20 more units in December 1997. However, that didn't seem to make much difference. His next injection was in February 1998. Again, this brought his condition up from level 7 to level 8 for a few weeks. The subsequent injections were 90 units each time; some improvement was charted.
Then there was some improvement in the beginning of September 1998, after the August injections of 90 units (Figure 2), and again in October there was some benefit. “Of course,” John went on to explain, “You can get a four-day period when it generally improves, some very good days, and a period when it's not so good. There's a lot of fluctuation that I found, in my case anyway.”
He continued with the injections all of 1999 and in February 2000 he found he was not getting much response anymore. Despite the injections there was no really noticeable change. Around May 2000, he decided to borrow the video from the BEBRF library on limited myectomy. Dr. James Patrinely, one of the pioneers of the myectomy procedure, narrated the video. After viewing the video, John contacted Dr. Patrinely by e-mail and described his symptoms to him. He asked Dr. Patrinely whether he would recommend limited myectomy surgery in his case and the response was affirmative. John then asked him if he could refer him to a doctor in Canada who did the procedure, preferably one in Ontario, and he recommended Dr. David Jordan of the Eye Institute in Ottawa.
The Operation
His wife, Kathryn, drove him to Ottawa on Thursday, September 28, 2000. He stayed at the inexpensive Rotel, which is the Rotary Club Motel. It's immediately adjacent to the Ottawa General Hospital. The following morning, on the Friday, they drove a short distance to the Eye Institute. In the preparation room things were very well organized. John only had to undress from the waist up. “They put a pillow under your knees,” John described, “and warm blankets to cover yourself so they had thought of all the small details that would make life a lot more comfortable for the patient.”
He was hooked up to blood pressure and an oxygen update monitors. He was then given a mild sedative and a local anaesthetic around the eyes. Dr. Jordan spoke to John ahead of time and told him that he planned to bandage his eyes after the surgery in the belief that it would reduce swelling. He also confided in John that this was a new experiment for him.
“As Dr. Khan explained earlier,” continued John, “the surgery consisted of the removal of a limited amount of muscle under and adjacent to the upper eyelid. A cut was made in the crease of the eyelid so the subsequent scars are invisible. I was awake during the surgery and, I was alert enough to remind Dr. Jordan that he was planning to do the levator tightening and the punctal occlusion - as if he would have forgotten it! I felt no pain until I was being stitched and I told Dr. Jordan I was beginning to feel something so he increased the anaesthetic, which knocked me out and I don't remember the rest of the procedure. I spent about an hour in the recovery room and Kathryn was quite surprised to see me with a huge bandage around my eyes and head. She thought I must have had brain surgery by mistake. I reassured her that Dr. Jordan was just trying a new technique. Then we drove back to the Rotel. I was slightly nauseated from the anaesthetic but I had very little pain. The following morning we removed the bandage.”
John put on ice packs regularly throughout the weekend. He used an antibiotic eye ointment that Dr. Jordan prescribed to prevent infection. This caused his vision to be blurry but otherwise he felt fine: so much so that he went for a walk on Parliament Hill to see the floral tributes to Pierre Trudeau who had died the day before his surgery. He and Kathryn went on to visit a friend so he was functioning fairly normally.
On the Monday he saw Dr. Jordan who was very pleased with the swelling. It was much less than in most of his previous patients, probably due to the bandaging. John had subsequent postoperative checks with Dr. Jordan in November 2000 and January 2001. John continued to chart his progress and following the limited myectomy procedure found that his weekly scores, near the end of September, were in the range 8 to 9 but began to taper off to the base level of 7 and 8 shortly thereafter.
Apraxia
In January 2001 Dr. Kraft gave John another injection of the BOTOX®; 40 units just to see if that would help. It did not seem to make any difference. From this Dr. Jordan, concluded that the BEB was essentially under control from the limited myectomy procedure, but that the remaining problem was mainly associated with apraxia. The levator adjustment had not fixed that. John went back to Ottawa in May 2001 for the frontalis sling procedure. The idea is that he can raise his eyebrows to lift the eyelids. During the procedure Dr. Jordan had him sit up twice for the adjustment of the strings connecting the two silicone rods: one goes through the eyelid; the other one is implanted in the brow. There are strings connecting the two rods. The reason that Dr. Jordan had John sit up was so that he could adjust the strings while gravity was acting on the eyelid. As with the limited myectomy procedure, John experienced very little pain and recovered rather quickly and there was no bandaging this time. The only minor inconvenience was the blurred vision from the antibiotic ointment. Once again, surgery was on a Friday, with a return visit on the following Monday and the postoperative session in October. The scores remained, however, in the 7 to 9 range.
The frontalis sling was in place and there wasn't really very much improvement. There was some improvement but it didn't last all that long. John went back in November 2001 to Dr. Jordan and he adjusted the strings and tightened them up a little bit. After that things were much, much better. This improvement continued on with very little change for the period until he stopped the charts at the end of the first five years. [Figure 3 on the left shows the fifth year, beginning in September 2001.]
Because the daily values were going up and down so much it was a little hard to see what was happening. So John took the daily results and averaged them every week and plotted them with the function of the number of the weeks after the treatment: BOTOX® or the surgery. [Figure 4 on the right shows the weekly averages.] Most of these curves track the results after BOTOX®; so generally they start out down around the 7 or 7.5 and go up a few weeks after BOTOX® and then come down again. The curves bunched up at the left side of the graph are mostly related to the botulinum toxin treatments. The black curve connecting large black dots is what happened after the limited myectomy, so John had quite an improvement but then it tapered off again. After the frontalis sling, tracked by the yellow curve, he had some improvement but then it started dropping off again in the 12-24 week period. Finally the red curve, extending out for 44 weeks, resulted when the frontalis sling was adjusted. Things just picked up pretty well after that, starting about Week 2 and improving again by Week 8 and continuing to Week 44. That was three years ago and it pretty much looks the same for the past three years.
Dry Eyes
“The remaining problem I have,” John went on to explain, “is with dry eyes and lagophthalmos - my eyelids do not close completely. I'm using TheraTears during the day. It comes in six packages of four vials each, and, each vial is 0.6 ml. At night I use Refresh Liquigel and I wake up two or three times in the night or maybe four times and put some more in. Occasionally I have irritated eyelids, which I just can't seem to clear up with the ointment. I was prescribed Voltaren by Dr. McGowan and I put a drop of that in and it usually clears up fairly quickly.”
John uses a sleep mask at night and the best one he found was by Travel Essentials. They had put out an earlier version, which wasn't much better than the type you get from the airlines. This sleep mask has a pad under the eyes so that it keeps the surface away from the eye and it has a good strap. The strap does not lose its elasticity very quickly and has a Velcro adjustment. He uses baby shampoo to wash his hair to minimize the chance of eye irritation. In the morning and at night John uses LidCare, which comes in two forms: little packages that are already moistened with the cleaner, which you can use if you're travelling, and the dry gauzes and a bottle of the cleaner that you put onto the gauze and rub over the eyes.
“Because my eyes are sensitive to light,” went on John, “I use SunShield glasses, which go over my regular glasses, and a hat with a brim. Here I am at age 61 after a very interesting eight-year period.”
John concluded by saying, “I would like to thank Dominic Macri for his help with the visuals and Kathryn and my family for love and support. I would also like to thank my doctors: Drs. Kurtz, McGowan, Kraft and Jordan for their wonderful care. Thank you all very much.”
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