lac@alice.UUCP (Linda Clark) (07/27/85)
Hi Netlanders! Greetings from a previously silent news reader. My name is Linda Clark and I work at Bell Labs in Murray Hill, New Jersey. Several friends have suggested that I post an article about something I am planning to do in the hope that it would be of interest or help to someone out there. This requires a little background about myself. I'll try to spare you and be as brief as possible. :-) 20 years ago I broke my neck when a playground swing I was pushing (with someone in it) came back and hit me in the face. (I was a pretty clutzy 10 year old...) The break was at the level of the first and second cervical vertebrae and resulted in total paralysis below my chin at first. The spinal cord was not severed, so after several years of hospitals and therapy I regained some movement and feeling in my arms and legs. I am currently in a wheelchair and have limited use of my arms and hands. (I can write and type at a terminal for example.) Thanks to a supportive family, friends and church I am able to lead a busy relatively 'normal' (some day I'll find out what that really means!) life. I work full time, go to school part time and am involved in several things at church including a singing group that goes out to other churches and a prison, etc. The heart of my news is that I'm going to have surgery in August at a hospital in the Bronx. There's a neurosurgeon there who's been doing some work with electrical stimulation of the spinal cord via electrodes implanted in the spinal cord. The aim is improved motor function. I found out about this when a friend showed me an article she'd read in a magazine about a girl who had this surgery. She had a deteriorating muscle disease that was progressively affecting her muscle control, and had gotten to the point where she was in a wheelchair and actually in worse condition than I am. She had the surgery, and after physical therapy she is now walking around without even a limp - and working as a research assistant for Dr. Waltz (the surgeon). My friend suggested that I call them and check it out. After a few calls and weeks of waiting (this has been in the works since Feb.) I finally got an appointment for an evaluation on June 10. My friend, my mom and I went in on the 10th and had a very overwhelming day. First we met Carmen (the girl from the article) who showed us some videotapes and explained the procedure. It was so amazing to see her in person - you'd never know there was anything wrong with her! Then we saw Dr. Waltz - who asked me a bunch of questions and basically said he felt I was an excellent candidate for the surgery. Needless to say, by this time we were pretty overwhelmed. It was a lot of information to take in. Of course, with something like this there are no guarantees, but the possibilities are pretty astounding - to say the least. One thing that seems pretty sure is that it never makes things worse, it only does nothing or helps. So it's almost a no lose situation, and I think I'd be crazy not to try. He did say at one point he thought there was a possibility I would walk!!! Think I'm excited?! Everybody here is going crazy. And I have people praying about this all over the country. The procedure itself involves a thin wire with four tiny electrodes placed inside the spinal column near the top two vertebrae, with the wire going down to an microchip implanted in the side below the rib cage. Then there's a battery powered transmitter worn around the waist with a little donut shaped antenna attached by wire. This antenna is taped in place over the microchip and sends the signals in which are then sent to the electrodes in the spine. I don't understand all of this yet, so it's hard to explain. So I'm going into the hospital on Aug 6 and having the surgery Aug 7. The operation itself is fairly simple and I should only be in the hospital about 6 days. Then I have to spend about 4-6 weeks testing different settings of the switches on the transmitter to find which is optimal for me, then it's therapy time. I have no idea how long it will take or how fast things will come back, so my life after Aug 7 is a big question mark, but one that I'm willing to deal with. Basically, that's my news. I guess you can tell I'm a bit excited. Dr. Waltz has also done this on patients with cerebral palsy and some muscle disorders (like Carmen). I know I haven't been real technical, and I apologize for that, but I don't understand it all myself. If you have questions you can send me mail or even call the Department of Neurological Surgery at St. Barnabas Hospital, Bronx, New York. (212)960-9476. I will post progress reports to the net if you are interested. Linda (soon to be bionic) Clark alice!lac Now all I have to do is figure out how to post this...
geb@cadre.ARPA (Gordon E. Banks) (07/30/85)
The surgery you mention is experimental. While it has been of possible value in dystonias and spasticity, it is certainly no miracle. Some surgeons tend to be overenthusiastic about their own pet procedures, and the patients, who want to get well so badly, tend to be ready believers. Some questions I would ask before having the surgery: 1) Have you had a second opinion (or even a third)? 2) Has this program been approved by the hospital's human investigation committee FOR YOUR INDICATIONS? 3) Has this program received funding where peer review has been done? Now even if all these are answered no, I am not saying you shouldn't have the surgery. There is certainly need for people willing to undergo experimental procedures. But, I have seen too many cases of people with spinal injuries whose hopes have been unreasonably raised. I suspect you might get some relief of spasticity. If that is what is being held out, then that is a reasonable hope, I would just caution you and others that read your message not to expect miracles.