Posted by juanantoniod on January 31, 2006, at 1:43:20
In reply to January 2006 Update on VNS Therapy, posted by juanantoniod on January 9, 2006, at 1:13:37
Today I got my VNS stimulator device activated. I went to my psychiatrist’s office in Glendale, where shortly after I got there, a youngish, petit, beautiful African American woman walked in. I assumed she was Tawanna, the rep from Cyberonics, the company that makes the VNS therapy device, so I introduced myself and asked if it was her. Sure enough, it was. Since the doctor had not yet come back from lunch, we had a nice, long chat about the benefits of the device and what I knew about it. She was VERY, VERY impressed with my knowledge and understanding of the process and my being so PRO active in my care. I think I deserve a pat on the back for that!!! In addition to discussing what I knew, she also showed me what the actual stimulator and lead wire that are implanted in me look like. It was kind of cool to hold these things in my hands that were implanted under my skin just a few weeks ago. She confirmed what I had already known, that my process from finding out about the procedure, to implant, was VERY fast. (Another pat on the back for Antonio there!) She said there are people who started the process way before me who, for various reasons, including insurance authorization, have not yet gotten the device implanted. I’m so very, very happy for my being so aggressive in getting this done and for the blessing of the care that I am able to receive with Medi-Medi (Medicare and Medi-Cal). All this time, I was afraid of going on “public benefits”, when in reality, they are actually better in most cases.
It was also quite cool because while we were waiting for the doctor, Tawanna asked his assistant for the “box” from Cyberonics. I assumed this would be a little patient starter kit or something, but it was the doctor’s actual programming wand and attached PDA. How cool is that??? I was the first patient who he ordered this for! I guess I’m a LITTLE snooty in that I love being FIRST, but it’s not so much that I have “beat” out other people, but just to know that I am on the cutting edge of medical care and technology associated with it. I also have to give kudos to Cedars Sinai Medical Center and Dr. Mamelak, my neurosurgeon, for the high quality, highly professional care I received from them. Because of what my friend, CamiloJ, is going through with his partner thinking he has a brain tumor, I really appreciate the care that I got from Cedars. Particularly the heart scan. This was one component that was necessary to get the procedure – to be cleared medically of any heart complications. I was going to just go to my “old” cardiologist in Glendale and get the scan done, hoping that he would just sort of “sign off” on it, as routine. Instead, I went through Cedars and I haven’t regretted it for one minute. From the time the doctor said he wanted the scan, they were ON IT! I was able to book the scan within 24 hours of requesting it, which is phenomenal. They told me I had to have no caffeine for 24 hours, so I immediately switched to Caffeine Free Diet Coke, since it is the only thing I drink (Diet Coke is) and I couldn’t be without a refreshment for 24 hours. On my way home from the doctor’s office, I picked up 2-12 packs of Caffeine Free Diet Coke and drank them up until the time of my procedure (and I’m talking right UP to the time). I even took one with me to the procedure in case I got thirsty.
Well to get to the point of this story, when I registered for the scan, I told them that it was needed for surgical clearance to happen that week. I also told the technologists this. They assured me that this would be no problem. Normally, when you have a scan or radiology done of any type, it has to be done first by the technologist, then “read” by a radiologist, which usually takes about 2 days for him just to “read” it, let alone get the reading to your doctor. Well, I kid you not, I was in for my scan at 2 p.m., and the scan took at least 2 hours, but by the time I got home on the bus, the doctor had already called to say he had the results and was clearing me for surgery. AWESOME!!!
So, after Tawanna showed me the pulse generator and lead wire (the implanted components), she opened up the Cyberonics box and got the programming wand and the attached PDA set up. Around this time, Dr. Asimus, arrived and said he would be ready in a few minutes. We chatted a bit more while she did her thing, then we went into his office. He asked me some update questions about my current situation, medications, etc. I told him that my depression had been at a 6 since just before I got the surgery, up from the 5 I had been at for 2 years. (0 zero is no hope, suicidal, 10 is euphoric, almost manic.) This one point increase was due to the hope that having the procedure had given me. Dr. Asimus wanted his assistant to see the device being programmed, so he called her in and told her to hold all the calls. They had me hold up the wand to my chest and did some tapping of the PDA screen with the stylus. Voila! It was done, they said.
Tawanna said we had to wait for at least 2-5 minute cycles to see if I felt anything intolerable so we waited to see if I would feel anything. I did not. We waited for the second cycle and I did not feel anything. Just to make sure the settings had “taken”, they re-interrogated the device to make sure. (She said this should be done at each visit – confirming the settings before the patient leaves the office.) I went home feeling like a champion, knowing what I had accomplished in just 3 short months!
When I got home, I proceeded to do my normal activities, which include making phone calls to various businesses for appointments and such. During one of the phone conversations, I got hoarseness in my voice and it was like a whisper. I was so excited! I said to my partner, “Babe, it’s working! It’s stimulating me right now.” He smiled back, and I reached for the magnet to stop it so that I could continue with my phone conversation. I did not find the magnet in time to stop that cycle, but during subsequent phone conversations, when it came on when I was speaking, I used the magnet to successfully stop the stimulation and restore my voice. Later on, I started to notice that even when I wasn’t talking, I could feel a tightness in my throat when the stimulating started, and when I would test my voice at these times, it was a whisper.
I have an email in to my Case Manager at Cyberonics because I do not know if it’s better to try and talk through the stimulation whisper/hoarseness, or if it’s okay to continually stop the stimulation when necessary to speak as it’s happening. I emailed another VNS patient that I met through Live Journal and she said that she thinks the hoarseness will be reduced in time as my body becomes accustomed to the stimulation. Although the stimulation is not that intrusive, this would still be nice, of course, to not have any side effects.
I know this was a long post, but I wanted to give everyone as much detail as possible so that you would know what you might encounter if you decide to pursue this treatment. Please post here if you have any specific questions that I have not already answered.
poster:juanantoniod
thread:574518
URL: http://www.dr-bob.org/babble/20060129/msgs/604738.html