Jim - Your portrayal of your implant experience is beautifully done. I am
so claustrophobic I could feel the agony of the PET and MRI, and even
outside the "chamber" your life was hardly a bed of roses. Please keep
us informed of your progress. Your experience will be of immense interest
and usefulness to so many, particularly if pigs can really provide
replacement tissue (ah, Ed McMahon was right, Johnny was wrong - pigs ARE
smarter than horses!) Thanks for having the guts to risk it, and taking
the time to share it.
Bob Dolezal
At 9:36 PM 1/9/97, Debra L. Bevel wrote:
>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] >
>>
>>
