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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 babzy on Sat, 2008-04-05 - 00:19
hi nancy,
i am so glad the vns is working that well for you..its exciting and it gives me hope.
i have lte leaving me with auras, simple partial to complex partial.. do you think the vns
has a better turnover rate for the more severe type of seizures felt nonstop every day which i do not exp.
im kinda puzzled between surgery and the vns. im not 100% sure the vns is worth the agravation.
my type occurs before my cylcle every month. if im stressed out, the partial comp can spread futher to a generalized complex..
thanks for any input babzy
hi nancy,
i am so glad the vns is working that well for you..its exciting and it gives me hope.
i have lte leaving me with auras, simple partial to complex partial.. do you think the vns
has a better turnover rate for the more severe type of seizures felt nonstop every day which i do not exp.
im kinda puzzled between surgery and the vns. im not 100% sure the vns is worth the agravation.
my type occurs before my cylcle every month. if im stressed out, the partial comp can spread futher to a generalized complex..
thanks for any input babzy
Re: vns
Submitted by llora428j on Fri, 2011-06-17 - 11:08
Hi Babzy,
Mine too are are the beginning of my cycle or the 7th day after. I had a cyst two years ago and had several and didn't know why until I found out there was a cyst. since then I have had them every so often which is a pain because I live in a rural area with no public transportation and have to rely on someone else all the time. Thank goodness I have two teenage daughters, one of which just graduated high school. The other one will get her licsense in November. Any way I am looking for a way to get my seizures under controll. I believe I am perimenopause and this is my problem. My estogen level is there but I have no progestrone level. I have been using a progestrone cream for two months and just had two more the other day. I am on Tegretol XR and Gabepentin. My doc is changing my meds today. I am going to ask him about the VNS and about hysterectomy also. Of course surgery is my last option. I will try other meds first. Lamictal and Vimpat are the ones he suggested. So will talk to him about them today. Along with the surgery options. Did you get the VNS? If so is it working?
Llora
Hi Babzy,
Mine too are are the beginning of my cycle or the 7th day after. I had a cyst two years ago and had several and didn't know why until I found out there was a cyst. since then I have had them every so often which is a pain because I live in a rural area with no public transportation and have to rely on someone else all the time. Thank goodness I have two teenage daughters, one of which just graduated high school. The other one will get her licsense in November. Any way I am looking for a way to get my seizures under controll. I believe I am perimenopause and this is my problem. My estogen level is there but I have no progestrone level. I have been using a progestrone cream for two months and just had two more the other day. I am on Tegretol XR and Gabepentin. My doc is changing my meds today. I am going to ask him about the VNS and about hysterectomy also. Of course surgery is my last option. I will try other meds first. Lamictal and Vimpat are the ones he suggested. So will talk to him about them today. Along with the surgery options. Did you get the VNS? If so is it working?
Llora
Re: vns
Submitted by banffgirl on Sat, 2008-03-01 - 02:52
hi lisa,
hope your meeting went well with your neuro and neurosurgeon. reading the bad stuff is like reading the side effects on meds. it sounds worse then the siezures! but then we do take tehm anyways. let us know how it goes with your son.
life is fragile, handle with prayer.
banffgirl
hi lisa,
hope your meeting went well with your neuro and neurosurgeon. reading the bad stuff is like reading the side effects on meds. it sounds worse then the siezures! but then we do take tehm anyways. let us know how it goes with your son.
life is fragile, handle with prayer.
banffgirl