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On Tuesday, September 24, 1996, I underwent the new, highly experimental, and much talked about procedure for the implant of pig fetus brain cells. As you probably know, this is the latest attempt at finding some relief for the symptoms of Parkinson's Disease. Even the word "cure" has been used; but only in the most hushed of whispers. The following is an account of what happened before, during, and after this surgery. I hope that my experiences will be of some benefit to you. If you have any questions after reading this article, I will be more than happy to respond to them. However, please be patient as it may take me a couple of days to get back to you. Some background information on me. I am a white male, age 48, and have had PD for 16 or 17 years. The symptoms include poor walking, poor speech, poor handwriting, extreme fatigue, and mild tremor. I've tried all the current medications (Sinemet, Sinemet CR, Amantadine, Eldepryl, ect). The only one that is of any use (and that has become very limited) is Sinemet. And even that is highly unpredictable with severe "on/off" performance. Eldepryl, while it did provide some relief, had to be stopped because of horrible side-effects (sudden projectile vomiting). For the past 10 or 11 years I have been under the care of Robert G. Feldman, MD. He is the Chief of Neurology at the Boston University Medical Center Hospital (now known as the Boston Medical Center). His private offices are at The Neurological Referral Center, in the Doctor's Office Building at the hospital. I believe that Dr. Feldman and his superb staff provided me with the best possible care. However, after 15 years of dealing with Parkinson's, it was obvious that I was entering the "end stage" of this hideous disease. It was at this point (June 1996) that Dr. Feldman introduced me to an associate of his, Dr. Samuel Ellias, also of The Neurological Referral Center. Dr. Ellias is the chief contact-person between Boston Medical Center and Diacrin Corp., the developers of this new approach to PD. After several interviews with Dr. Ellias, including a talk about pallidotomy, he asked if I would be interested in looking into Diacrin's program. I was more than willing; I was desperate. I had rejected the idea of a pallidotomy; it didn't (and still doesn't) make any sense to me to "burn-out" a part of my brain. It just wasn't logical to me. What if I needed it in the future? What did appeal to my sense of logic was the "addition" of something. And that, essentially, was what was being proposed. Due to my age, length of time with Parkinson's, and my motivation, Dr. Ellias found me to be an ideal candidate for the program. Several very long weeks passed while everything was put into place. Strict protocol had to be achieved and maintained for the results, either good OR bad, to have any meaning to the medical community. Literally mountains of paperwork were generated between the Federal Drug Administration, Massachusetts General Hospital, Boston Medical Center, Neurological Referral Center, Diacrin Corp., and the Lahey-Hitchcock Clinic, to name a few. After all of this was taken care of, they were ready to begin pre-operation testing. So, in August, the real work started. As they explained, it was essential that a "base-line" of my performance was fully documented. This included all of those tests we're so familiar with: Walking, balance, foot tapping, handwriting, ect. In addition there was a VERY tiring battery of neurological/psychological tests. Of course, there were unending visits to the labs for blood work. You must be willing to go through all of these tests; but be prepared to be exhausted by them. As the date for the operation neared, the examinations became more intense. There were CAT scans. There were MRI scans. Don't be nervous about them. The idea of being placed inside of a machine really bothers some people. Luckily, I am not one of them. But be prepared for a scan that I found to be pretty rough. It's called a PET scan. It is similar to an MRI but you will have your head tied down while you're in the machine for two and a half HOURS. To make matters worse, they will inject a substance into a vein in one arm while they draw blood out of an artery on the other. This will take place after you've been without medication for eight to twelve hours and without food for at least that long. I had a bad reaction to some pre-scan pills; severe diarrhea and blacking-out. At the end of that day I was a complete wreck. After going through all of the testing, and apparently "passing," I finally met with Dr. James Schumacher of the Lahey-Hitchcock Clinic. He is the surgeon who actually performs the operation. And it is he who has the final say as to whether or not the procedure is done. And here I hit a roadblock. I was informed by him that I must have an HIV test and it must come back "negative." For two days my entire life was on "hold" while waiting for the results. Fortunately, all was well. But it seems to me this test should have been performed MUCH earlier, rather than waiting until just before the operation. The operation was scheduled for Tuesday afternoon, September 3rd. After the long ride from southern Rhode Island to Burlington, Massachusetts I was informed that there had been a technical problem with the harvested pig cells. And that the surgery could not take place for another three weeks. You cannot imagine what a let-down this was. Finally, The Big Day arrives. I had to be at Lahey at 6:30 AM for some last-minute lab work and for the mounting of a special frame to my skull. This will be rather graphic, but it is the best way to inform you as to what to expect. In order for the doctors to be able to guide the needle into the brain, a special frame must be, literally, bolted to the head. It is attached at four points with aluminum screws. Yes, they use a lot of local anesthetic; but I was aware of some pain anyway. It's really not as bad as it sounds, but it wasn't a picnic, either. After the mounting, I was rolled around the hospital for yet another MRI scan and one last CAT scan. Then, after waiting in a holding area, it was up to the operating room. Here I was given a sedative to help me relax and a shot of local anesthetic to the skull. Yes, you are AWAKE during the operation! And you are fully aware of what's going on. Every now and then I was asked to move my toes or hands. Anyway, they opened up my skull and went in with the needle. No, you don't feel anything at all! It's just amazing. About two hours later they were finished and sewed me up. Naturally, I was a bit groggy when I was returned to the post-operative holding area. But I felt fine and HUNGRY. Eventually I was sent up to my room. The floor staff couldn't believe that the doctor ordered my supper. I ate every scrap of it and slept well that night. They gave me a couple of shots of codeine for my headache. The next morning (are you ready for this?) I was discharged! It sounds impossible, doesn't it? And I did well on the trip home. But it was short-lived. I developed a headache unlike any before it. I very rarely get them; this one was agony and lasted for nearly a week. Also, for several days I couldn't keep food down. I was really very ill. Dr. Schumacher called and said it would all pass. And it did. But for a couple of weeks after the operation I was even more tired and weak than usual. I was told that there were no guarantees whatsoever that this procedure would yield any beneficial results. I was invited to participate, as a volunteer, in the study to see if this operation posed any threats to one's health. In other words, it was a medical safety test. I can certainly understand the reasons for this. For example, if it cured Parkinson's Disease but I dropped dead of an unknown virus, the researchers would have to know this. I was the eleventh person in the world to have this particular implant procedure. I consider myself to be very fortunate. Now, as to what you're waiting for: The Results. I cannot honestly say that there have been any remarkable changes. One week after the operation, an MRI scan showed that the new cells had survived. That's a fairly major hurdle. There will be some rather extensive testing, starting in December, to see what, if any, improvements I've had over the initial "base-line" we established at the outset of the program. In fact, all of the tests will be repeated; including the dreaded PET scan. However, I can say that I am feeling somewhat better. Sleeping has improved, I have a bit more energy, and I am a little less dyskinetic. I still take Sinemet, and it seems to be working a little better. These changes, while noticeable, are slight. And they may be caused by a "placebo" effect. Bear in mind that it's only been a month since the implant was performed. In theory, no positive results are to be expected for the first six months. And, at that, no one has any idea how long they will last. This is truly leading-edge technology, with great promise and possibly unknown pitfalls. I will endeavor to keep you posted as to my progress, or lack thereof. Jim Finn E-Mail < [log in to unmask] >