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vns
Wed, 01/30/2008 - 18:21My son is scheduled for vns march 4th. I am quite scared about this,have been researching it for several years now. It seems they find new problems all the time. I understand thtas how it is,but if anyone has any info for me to keep me from cancelling,please let me know. He is 11 yrs. old. Was diagnosed with myclonic epilepsy when he was a baby. Have tried every medicine out there,nothing seems to work. He has about 10-20 siezures each day(short ones) Grand malls about every 4-6 weeks,he goes thru periods of cluster siezures,drop attacks ect..He is on depakote and zonegran right now.this combination is the only one that actually decreased them from about 50 a day down to 10-20. Anyone have any info or anything to help me?
Thank you,Lisa
Comments
Re: vns
Submitted by banffgirl on Sat, 2008-02-16 - 18:11
i personally just had a vns implanted on 2/7/08. it doesnt get turned on tilll 2/21/08 after i heal. the surgery it self is not very long, i ended up in hospital monday though cuz of t/cs at pre op testing so my epi spec admitted me till surgery and i stayed till sat afternoon to make sure no problems. the one thing i can say is the day of the surgery and the next day were very painful and i was taking all the pain killers they would give me. by saturday it was much better and i was taking just regular pain meds for chest, neck didnt hurt at all any more. the thing is to keep him from bendng over till healed. i am still holding my hand over my chest cuz it feels like its going to move or something though i know it isnt if i dont bend. i know qute afew people that have had vns for years and have had no problems and it helped them. yes, like you i heard a few horror stories but i find as soon as you mention something people tell you the bad stuff. its like when your pregnant and people just have to tell you there horror stories with preg and delivery. so i took the thoose stories with a grain of salt when making my decision. if there is a posiblity of working its worth it. i personaly have uncontroled primary generalized siezures so i figure its worth try. i have been on every med under the sun and have constant epileptic spikes on my veegs and eegs.
God bless your family,
banffgirl
i personally just had a vns implanted on 2/7/08. it doesnt get turned on tilll 2/21/08 after i heal. the surgery it self is not very long, i ended up in hospital monday though cuz of t/cs at pre op testing so my epi spec admitted me till surgery and i stayed till sat afternoon to make sure no problems. the one thing i can say is the day of the surgery and the next day were very painful and i was taking all the pain killers they would give me. by saturday it was much better and i was taking just regular pain meds for chest, neck didnt hurt at all any more. the thing is to keep him from bendng over till healed. i am still holding my hand over my chest cuz it feels like its going to move or something though i know it isnt if i dont bend. i know qute afew people that have had vns for years and have had no problems and it helped them. yes, like you i heard a few horror stories but i find as soon as you mention something people tell you the bad stuff. its like when your pregnant and people just have to tell you there horror stories with preg and delivery. so i took the thoose stories with a grain of salt when making my decision. if there is a posiblity of working its worth it. i personaly have uncontroled primary generalized siezures so i figure its worth try. i have been on every med under the sun and have constant epileptic spikes on my veegs and eegs.
God bless your family,
banffgirl
Re: vns
Submitted by bernardcwe on Sat, 2008-03-01 - 08:56
The VNS might be a miracle or a curse. IMO, there are a few other alternatives (EEG neurofeedback, neurobehavioral therapy, LGIT diet, modified Atkins diet, ketogenic diet) which can be tried first with less risk. If they don't work, you can always try the VNS. My 2 cents
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Check out my chart of alternative epilepsy treatments.
The VNS might be a miracle or a curse. IMO, there are a few other alternatives (EEG neurofeedback, neurobehavioral therapy, LGIT diet, modified Atkins diet, ketogenic diet) which can be tried first with less risk. If they don't work, you can always try the VNS. My 2 cents
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Check out my chart of alternative epilepsy treatments.
Re: vns
Submitted by tonialpha on Fri, 2011-06-17 - 21:29
Don't rush into anything!
I have had 3 surgeries. I have had 2 brain surgeries and wanted to have a perfect life.
I tried medication and I had children which I was blessed w/. I had the VNS in 2000. It helped a little. I have had the battery changed.
The seizures still occur but the duration is not as long. It helps. 1/3 complete control, 1/3 partial, 1/3 no difference
When I break a leg or arm and the orthoped. wants to do a special check on the MRI he can not because of the VNS. IF I was at the University I can probably get it done but not at regular hospital. A CT can be done w/ no problem. It is a limitation. I would think about it.
Don't rush into anything!
I have had 3 surgeries. I have had 2 brain surgeries and wanted to have a perfect life.
I tried medication and I had children which I was blessed w/. I had the VNS in 2000. It helped a little. I have had the battery changed.
The seizures still occur but the duration is not as long. It helps. 1/3 complete control, 1/3 partial, 1/3 no difference
When I break a leg or arm and the orthoped. wants to do a special check on the MRI he can not because of the VNS. IF I was at the University I can probably get it done but not at regular hospital. A CT can be done w/ no problem. It is a limitation. I would think about it.