Joy, I saved the e-mail that Jim Finn sent in about his pig-cell implant. Here it is: Date: Sun, 3 Nov 1996 16:29:12 -0500 From: Jim Finn <[log in to unmask]> Subject: IMPORTANT: I've had the pig-cell implant To: Multiple recipients of list PARKINSN <[log in to unmask]> >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] > > >