Afraid to have VNS. Anyone had it?

I also have complex partial seizures about 2/month.  I've been on every med and went through the testing to see where the seizures were coming from.  When the testing, being strapped to a hospital bed and having wires put on my head was completed, I was told that the seizures were coming from both sides of my brain.  The Neurologist who headed the testing suggested that the VNS would be good for me.  You need to think if you really want the VNS.  The drawback of having one put in is that you can't have any further testing in you via a MRI, just the brain, because of the wires in your neck.  The VNS can be put in but the wiring in your neck will remain their. THe only way you can have testing done to check on any diseases is through a CT.  I suggest that you talk to your doctor and get his/her opinion and go through the tests to see where the seizures are coming from.  Also you may want to look into getting a helper dog to be there when you have a seizure.

You asked a very good question, 'are you hurting yourself by continuing to have seizures?' While we can't tell that for sure in everyone, we do know that ongoing seizures does cause problems. People with uncontrolled seizures tend to have more cognitive problems, are at greater risk of having problems getting or keeping a job at the level of their training or education, at risk for problems with moods, and at risk for injuries, emergencies, and for dying as a result of epilepsy. I don't say this to scare people, but to be open when talking about some risks. It doesn't happen to everyone, but these are risks that people need to consider. When people have ongoing seizures, it's time to talk about pros and cons of doing nothing, versus pros and cons of having a procedure such as surgery or VNS, or even of trying dietary therapy or a research trial. While some people have talked about risks of VNS, please know that not all these are true in every case. It is true that VNS is not a cure for seizures and should not be thought of as one. It only works in about 40 to 50% of people. An MRI of the head can be done but a special MR machine with transmit and receive head coil needs to be used and the VNS turned off first. Having an MRI of other parts of the body is not safe at this time, but there are other types of imaging tests that can be done. I understand that people may be afraid of surgery, but it often sounds scarier than it really is. People who end up having surgery for epilepsy first have to go through extensive testing so the surgery teams knows exactly where the seizures are coming from, whether or not it can be done safely, and without causing other side effects. It's not like having emergency surgery. A person will have plenty of time for this testing and to talk to many different people about what it means and whether or not they want to proceed. I encourage everyone with seizures to start by asking their doctor, or an epilepsy specialist if they haven't seen one yet, what the long term effects of their seizures are, then compare this to the long term effects of different treatment options. This is the only way that people can truly make an informed decision. There's an article in the newsletter this month that talks about the effects of having surgery early (after 2 years of having seizures). It's very interesting article and I encourage you to read this! Thanks for sharing your questions and concerns! Epi_help Epi_help Resource Specialist