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.
VNS threapy: Is it for me?
Thu, 07/14/2005 - 15:15Topic: Surgery and Devices
Hello All,I am a 40 year old male who has had E all of my life. I am dealing with it well, sometimes (like all of us), I wish I didnt have E. I know that is selfish for there are people worse off then me.I been on all kinds of meds from phenobarb to dilantin (including Tegertol). I was recently taken off Dilantin due to the results of my first bone scan (why my previous doc didnt order one is a different story.My wife sent away for info on VNS threapy. From what i read about it, it sounds good (the info they sent to me), but have heard stories that it can do more harm then good.In this fourm, lets talk about our E and if you had any dealings with VNS. We are here to learn from ourselves and others.I, as well as other people, would like to hear your input about this threapy. It may give some of us some ideas what is out there for treatments.Thank you.Erik
Comments
RE: RE: VNS threapy: Is it for me?
Submitted by EHammarstrom on Thu, 2005-07-14 - 15:09
I heard that the surgery was risky. That was a while ago. I am pretty sure it has been worked on and has got better. What I think about of the surgery, is that you are awake through the whole thing, not sure I could handle that.I think all treatments have the risks. Not everything is for everyone. And the question is, "Will it make life better for me?"When I first heard of the surgery, and asked my then nero, he told me it could be a 60% - 40% chance, and that was a 60% chance I be in a wheelchair for rest of my life.I am sure the surgery has better odds these days, but sure it has it side effects. I was reading htat VNS has side effects also, so I guess everything comes with something.I was talking to someone from this board about VNS, he gave me this URL to a VNS chat board.http://s4.invisionfree.com/VNS_Message_Board/index.phpErik
RE: RE: VNS threapy: Is it for me?
Submitted by EHammarstrom on Thu, 2005-07-14 - 15:14
I heard that the surgery was risky. That was a while ago. I am pretty sure it has been worked on and has got better. What I think about of the surgery, is that you are awake through the whole thing, not sure I could handle that.I think all treatments have the risks. Not everything is for everyone. And the question is, "Will it make life better for me?"When I first heard of the surgery, and asked my then nero, he told me it could be a 60% - 40% chance, and that was a 60% chance I be in a wheelchair for rest of my life.I am sure the surgery has better odds these days, but sure it has it side effects. I was reading htat VNS has side effects also, so I guess everything comes with something.I was talking to someone from this board about VNS, he gave me this URL to a VNS chat board.I am not sure if this is going to let you click on it, if not just copy and paste it. http://s4.invisionfree.com/VNS_Message_Board/index.phpErik
RE: VNS threapy: Is it for me?
Submitted by kwgreulich on Thu, 2005-07-14 - 13:41
I too have had seizures that can't be controlled. My doctors are currently recommending VNS. I have done a lot of research and also been in touch with people with the treatment through Cyberonics, the producer, as well as the email. My background is spinal meningitis, hydro encephalytis and 2 brain surgeries by the age of 3 years old. This occurred back in 1956 & 1957. I didn't find out what epilepsy was til i had a grand mal as an adult, but i now know i had partial complex seizures at least as far back as my early teens.
I have done a lot of reading and checking on VNS using email and also attended a session on it in Portland, Oregon. For me that was a trip 300 miles each way. My last brain surgery was done 15. July 2003 up in Portland and i ended up in the hospital a total of almost 3 months that year. They did a left temporal lobectomy to remove dead brain tissue caused by lack of Oxygen during seizures and because that is where they thought the seizures started. Unfortunately i still have seizures most every day. Yesterday they lasted off and on for 3 hours.
At this point in time i don't want to have the surgery. From my checking it seems like the success rate is only 50-65%. The other things are that i just don't want to go through another operation, and it affects ones voice when the device fires. I help lead the singing in our church and teach Bible study one night as well as adult Sunday School.
The website that has really offered me the most information is : bridgesull.proboards.com.
Feel free to contact me if you have other questions i can help with. My email address is kgreulich@fs.fed.us
I too have had seizures that can't be controlled. My doctors are currently recommending VNS. I have done a lot of research and also been in touch with people with the treatment through Cyberonics, the producer, as well as the email. My background is spinal meningitis, hydro encephalytis and 2 brain surgeries by the age of 3 years old. This occurred back in 1956 & 1957. I didn't find out what epilepsy was til i had a grand mal as an adult, but i now know i had partial complex seizures at least as far back as my early teens.
I have done a lot of reading and checking on VNS using email and also attended a session on it in Portland, Oregon. For me that was a trip 300 miles each way. My last brain surgery was done 15. July 2003 up in Portland and i ended up in the hospital a total of almost 3 months that year. They did a left temporal lobectomy to remove dead brain tissue caused by lack of Oxygen during seizures and because that is where they thought the seizures started. Unfortunately i still have seizures most every day. Yesterday they lasted off and on for 3 hours.
At this point in time i don't want to have the surgery. From my checking it seems like the success rate is only 50-65%. The other things are that i just don't want to go through another operation, and it affects ones voice when the device fires. I help lead the singing in our church and teach Bible study one night as well as adult Sunday School.
The website that has really offered me the most information is : bridgesull.proboards.com.
Feel free to contact me if you have other questions i can help with. My email address is kgreulich@fs.fed.us