Today was, for lack of better phrasing, and "interesting" day. The neurologist has exhausted nearly all her resources on me. What medications I'm not allergic to prevent me from properly functioning on a day-to-day basis. She may have one or two more attempts, she says, but the limited amount of medications used to treat seizures have failed. "Your seizures seem to be less severe, but still frequent, and still continuing to deteriorate your brain." Always a wonderful conversation topic. A new alternative was offered to me today. I have a few months to toy with this "innovative idea" (which is about thirteen years old now) and between now and then she will continue to tweak my medications to see if we can't find some oral treatment that will stop the seizures altogether.
VNS- Vagus Nerve Stimulation. A small electrode would be surgically attached to my vagus nerve in my neck. A wire would then run down my neck to a small pocket-watch sized generator implanted just above my left breast. I would wear a wrist-watch type magnet around my wrist or attached to my belt. The magnet would serve two purposes. One being that it would be swept across the generator acting as an on/off switch. Two is that it would be swept across the electrode itself to send an electric charge across the vagus nerve cutting off the seizure altogether, or at least making the seizure less severe.
On the "pro" side of this decision is that I might actually lead a normal life. The VNS would allow me to go out to functions and not have to leave early or go into hiding due to seizure activity. I would be able to hold a job and not be on a cocktail of daily medication. It also combats depression which we all know I could use.
The "con" side is.....well they are going to be attaching this electrode to a vital nerve. If something goes wrong....it could possibly go really really wrong. Most of the side effects from it include: infection, loss of vocal control, itching or tingling in the throat, cough, and sore throat. Is it bad that my biggest concern is loss of vocal control? I am a singer. Not professionally (obviously) but it's what I do to express myself and find enjoyment in my life. If I lose my ability to sing I will be crushed. I am so conflicted on this. Realistically; it's more then likely GOING to happen. I'm scared of the outcome, but days like yesterday when I walk around exhausted and in a medication haze, I can't wait to have it done. I need more information, and to have my questions answered. A representative will come to my house and talk to me about the product. I have already practiced my introduction to him.
"Hello, before you begin telling me all about this device and procedure know this; I most likely WILL be having this implanted. So for the time that you are here, you are NOT an advocate. You will NOT talk to me like you are selling a product. I am NOT buying a vacuum cleaner; this is my LIFE we will be discussing. I want facts, realistic numbers and percentages NOT 'round about' almost truths. I have questions you will answer for me and if I am not satisfied with the 'presentation' given, I will be contacting your supervisor and another representative will be sent out who can give me REAL information......shall we begin?"
May sound bitchy but it must be done....when you sit for an hour and listen to WHY VNS is the best solution for you, they tend to sugar coat necessary information that may be vital information. I will do what I must, but I will NOT be lead in blindly.....
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