Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Revisiting the VNS option again..
Thu, 09/20/2007 - 18:35I have been wondering about this still but haven't had the nerve (or the time) to make a consultation and find out exactly what is up with the Vagus Nerve Stimulator. The biggest issue for me has been the "what if". I've read through the brochures and visited their web site and support forum. I've seen both good sides and bad sides about it as some don't always have much luck and others have had fantastic results - everyone is different, makes sense to me.
Where I wonder a lot is on some of the information that is being passed. For example, I've read how patients can easily have it removed then in other areas I have read it's nearly impossible once it has been inserted. Who is correct? Then I had my neurologist, I'm in the USA by the way, tell me to take everything that is being said on the Internet with a grain of salt because there will always be two sides to every story and you might not always hear them both. After considering that thought, I can understand his point.
It's a bit frustrating but I'm just taking everything in and making notes then I talk about it with the Doc when I see him. I actually thought I was going to bypass not having to go in for an appointment but you know what? NOT A CHANCE! I gotta call and see about setting something up for the month of December. It isn't that I don't want to go because I've got insurance and all. It's more the matter of I don't have time!! LOL! I'm a full time graduate student with two classes as it is and looking at taking three classes to finish early, ACK! I know excuses but I'll make time because it has to happen. Besides, by then I should have a better idea of what's going on and what I want to do with the surgery. I really don't want to go through it while I'm in school. Anyway.
Comments
Re: Revisiting the VNS option again..
Submitted by suebear on Mon, 2007-09-24 - 17:52
Thanks. I called today and set up an appt to see my neurosurgeon on Friday for a consultation. I got a little bit of my questions answered while I was on the phone with his secretary which was good. My husband brought up an interesting question and one of the posts on here refreshed my memory as well. In package I received it discussed the battery needing to be recharged every so many years (three to five years I believe) but more important a few questions came about how difficult it will be doing that and what it is going to cost me as a consumer/patient? I highly doubt this has been pre-determined into the original surgery sum amount. If it has, it would be a blessing however I do not believe something of this nature would be but perhaps I am overlooking information.
FWIW, I am trying to be proactive and look for financial information now so my husband and I know exactly what needs to be done when and how. Now I am working on a list of questions to take with me on this Friday to see the neurosurgeon and ask him and the secretary for this procedure. If anyone can suggest things they feel would be appropriate to add, I am happy to listen.
Thanks everyone,
Sue
Re: Revisiting the VNS option again..
Submitted by karend03 on Mon, 2007-09-24 - 18:18
When I first had my VNS implanted years ago, they told me it could not be removed. Then after several years, and it didn't do much good, my neuro turned it off and left it there. In 2004, my new neuro sent me to UVA for a RTL. My neuro here in NC said it was possible I would need a new proceedure (don't remember what it was called) because it was possible my seizures were coming from the occipital lobe because I had visual hallucinations before a seizure. He said he didn't know of anyone here in NC at the time qualified to do the proceedure. ANYWAY, now that I have lost you, the surgeon who worked on me took the VNS implant out as well as the wire in my neck.
Re: Revisiting the VNS option again..
Submitted by txrhb1 on Mon, 2007-09-24 - 00:36
Good luck on your decision. I've had the VNS for 2 years now, and am very happy with it. Hasn't reduced my need for meds, but has reduce the amount of time it takes me to come out of a seizure and be able to respond to those around me. My hubby thinks it has reduced the frequency of my seizures too, which I'm glad to hear. I read all the stuff on the internet, took it with a grain of salt, and then talked with my doctor. I trust her with my life, and she was very encouraging. Glad I listened to her. If you have any questions, let me know. ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo