I'm new and I have a question about epilepsy

nicudaynurse · Mar 8, 2003

Hey Rosie Glow,

I am currently a NICU nurse, but I have worked in pediatric neurology and I know A LOT about the VNS. What kind of questions do you have??

angelbear · Mar 8, 2003

I currently work with two residents who have the vns and my son has had his about 5 yrs now. I will answer whatever I can.

Home Health Columnist / Guide · Mar 8, 2003

Found this great info doing google.com search---

other info available but these had great info.

Use in Children

https://www.efa.org/answerplace/children/vns.html

The VNS from a Patient's Point of View

http://www.howdydave.com/vns.html#me

RosieGlow · Mar 10, 2003

wow. Thanks for the responses everyone.

I guess first of all I'd like to know about how effective you've found the device to be. What are the side effects? Are they comparable to the side effects of AEDs? Is there a certain type of patient that finds VNS most effective? What is your personal take on it?

nicudaynurse · Mar 11, 2003

Effectiveness: A third will have major improvement, a third will have some improvement, and a third will have no improvement. The kids that I worked with that had a VNS had intractable epilepsy and were on at least 2 or 3 AED's so they were very challenging cases. One of our kids did become seizure free and a few others had a significant decrease in seizure frequency. The VNS also improves alertness, memory, and cognition.

Side effects: hoorificeness, cough, tickling in the throat, changes

in voice during stimulation. Compared to AED's

these side effects are minimal. AED's have A LOT

of side effects.

Personal take: I am a big fan of the VNS. It has improved the

quality of life for kids with epilepsy. The VNS

has given a sense of control to the patients

and/or families by using the magnet which can

stop/shorten seizures. All the kids with the VNS

have become more alert. None of our families had

any regrets about the VNS.

Be sure to check out Cyberonics.com they will have lot's of info. and will be more than happy to mail you some info.

zambezi, BSN, RN · Mar 13, 2003

I work in a neuro clinic and the docs to quite a bit of vns implants/follow-up....there is a vns registry that tracks patients and compiles information on many different areas...from what i have seen, i am a big fan as well...i have talked to some patients that it has not been very effective with, however, the large majority of the patients are quite happy with the results and have better control of their seizures. Many have come down on their AEDs as well. Family members/caregivers like the magnet as well as it often shortens or halts the seizure. Most of the patients that i talk with are more alert, have less headaches and a better post-ictal state. Cyberonics.com is a good site to look at...that is the company that the registry is through...

angelbear · Mar 13, 2003

My son has gone from approx. 45 grandmal seizures per month to about 20 per month. He is 15 and has had seizures since birth. He has been on most all AED's including a couple of drug studies. Most of the AED's did not work and had horrible SE. We are pleased with the improvement.

RosieGlow · Mar 17, 2003

this is all great news. I've read the 1/3 statistic as well. But I'd say the majority of the patient feedback I read/hear about is positive. Though I suppose even "somewhat" improvement is still a pretty big positive when you have a seizure disorder.

Has anyone noticed a certain type or locality of seizure is more likely to respond to the VNS treatment?