Hi, first of all I am kind of a wreck today, today and yesturday I had seizures.... They just wipe me out emotionally!!! I just want to hide from life until someone takes them away.... Sorry to sound so bad but I don't want to go through this so much. It might be a little ok if they were not so close together.Thank you for listening!!!!!
Also yesturday I got some info on a program called vns theropy?? Anyone know what that is or have you heard anything about it? I called the number and talked to someone for a while. I would like to here some actual feedback though. It seems to be this divise that in put into your chest and wrapped around your tenth nerve? and you are given a shock(very small, she says you don't feel it) every 5 minutes. she says out of 100% it probably does'nt work on 20%. but it is a perscription and your docter has to agree with it??? Any ideas?
huggggggggggssssssssssssss.......................
michelle
So sorry you are having such an awful time......
yes, as Jen says, people either seem to love the VNS or hate it. Cyberonics, maker of the Vagus Nerve Stimulator, states that 1/3 of those implanted have good seizure control and better quality of life(shorter seizures if they have them, faster recovery time)This group MAY be able to lower or go off medication. The next 1/3 of patients do somewhat better and do have better quality of life. They cannot go off meds, but still see some improvement. The last group do poorly, have no seizure control or may even have more seizures.
There are complication for some, like with any surgery so you really do need to steady and research it. I have many friends who have children who have improved a great deal with VNS therapy. I have met a few who have not had any improvement.
Hang in there! I hope there is an answer to give you better control.
yes, as Jen says, people either seem to love the VNS or hate it. Cyberonics, maker of the Vagus Nerve Stimulator, states that 1/3 of those implanted have good seizure control and better quality of life(shorter seizures if they have them, faster recovery time)This group MAY be able to lower or go off medication. The next 1/3 of patients do somewhat better and do have better quality of life. They cannot go off meds, but still see some improvement. The last group do poorly, have no seizure control or may even have more seizures.
There are complication for some, like with any surgery so you really do need to steady and research it. I have many friends who have children who have improved a great deal with VNS therapy. I have met a few who have not had any improvement.
Hang in there! I hope there is an answer to give you better control.
Today I saw the doc, he is going to send me to a specialist, he says I am in the 30% that meds do'nt work, its time to try something ealse.
We have to wait for the ins. to approve it. Until them we keep trying diffrent meds, and no more driving, for thoes of you who have seen prior post's.
lots of hugggggggggggssssssssssssss.................
michelle
Not driving is tuff!!! I was due to start nursing school one week before my dx. I was to rotate between 8 area hospitals. Needless to say I was forced to drop out because I couldn't drive at all. This was devastating for me. This will work out for you in the end. It is important to realize why we can't drive and why we are really a danger to other innocent drivers on the road.
Hoping everthing works out with your insurance and I also posted in another thread about you trying other alternatives since you seem to be drug resistant. Take care, Tracy
Hoping everthing works out with your insurance and I also posted in another thread about you trying other alternatives since you seem to be drug resistant. Take care, Tracy
Not driving is tuff!!! I was due to start nursing school one week before my dx. I was to rotate between 8 area hospitals. Needless to say I was forced to drop out because I couldn't drive at all. This was devastating for me. This will work out for you in the end. It is important to realize why we can't drive and why we are really a danger to other innocent drivers on the road.
Hoping everthing works out with your insurance and I also posted in another thread about you trying other alternatives since you seem to be drug resistant. Take care, Tracy
Hoping everthing works out with your insurance and I also posted in another thread about you trying other alternatives since you seem to be drug resistant. Take care, Tracy
Hi Michell, I was recommended for VNS in 98. I chose to go thew the surgey program instead. Do you have temporal lobe epilepsy? If you do and VNS doesn't work out you should ask if your a candidate for brain surgery. I was refused in the surgery program in 99 because of my health. I have diabetes and coranary heart disease. They wouldn't even put the VNS in because I have a blocked corodid artery in my neck and it's too close to the nerve where the wire would go to. Two years ago I was put into a test group for gamma knife surgery and ended up having that. The surgery was done in August of last year and I'm waiting for the results. I hope for the best results form what ever you choose and I hope we hear from you. You will be in my prayers. Jeff
Thank you so much.I hope all goes well for you! I will wait for the specialist to tell me what my options are. They do not know yet were my seizures are located. I need the specialist to do that.
So I will wait for ins. to say ok.
Thank you for your concern, its nice to know there are other people out there in the same cituation I am!!
lots of huggggggggggggssssssssssss.........................
michelle
Michelle, I hope the insurance OKs it soon for you! Best wishes that the specialist can help you.