VNS

[Rachel]

The lad I look after is having his fitted in September. I've read up loads on it and his mum has told me loads of stuff, so I think I pretty much know what it's about.

What I would like to know, is how long do you think he'll be in hospital for? How long is the recovery period? ( I know these will vary but there must be some kind of time scale)

Also, how long before he'll mobile. His mum says he'll have to go to Great Ormand street regulary to get it adjusted.

I so nervous. When he comes back to school I just hope I'll do it correctly. Even though I know I'll get training etc it's still a bit of a worry.

Anyone been in this situation and can tell me a bit about it

 

[Birdbomb]

This is usualy done as a day surgery but sometimes the surgeon opts to keep a patient overnight.

He'll be sore for a few days and should take things a bit easier. Most of the immedate healing takes 2-3 weeks but remember EVERYONE is different. Any kind of complication will most likely extend the time line.

Have you visited my site? It is only for VNS patients. We have been running for 2 and 1/2 years almost 600 members from all over the world.
There are hundreds of links and plenty of caring and informed people to help you out.

www.vnsmessageboard.com

Guests may read most of the forums, but you must register in order to post. Pop in and give us a visit.

 

[Rachel]

Thanks

I will definately take a look. Thanks very much.

 

[Bernard]

BB's site has a ton of info and should answer most any question you can think of regarding the implantation surgery, recovery and device activation.

Even though he should be released and able to get around within a day, his throat will likely be very sore right after the surgery.

FYI, the physician's manual instructs that the device should not be activated until 2 weeks after the implantation surgery.

 

[Rachel]

Well that was interesting. It seems that a lot of people have had little or no change in their seizures. It makes you wonder why so many are offered it :?

 

[Bernard]

LMAO. I wondered the same thing when I first found out about it.

To be fair though, it is reasonable to assume that the majority of VNS patients who had success with it don't bother to go on the internet and talk about in VNS related forums.

The larger question that puzzles me is why the medical industry hasn't taken a stronger interest in EEG neurofeedback which appears to be more effective than the VNS and does not have any known negative side effects.

 

[Rachel]

I suppose because it does work for some, people hold on to that hope.

Let's face when you have no life and someone offers you something that could help I suppose you would go for it.

It's like the Lad I look after he has absolutely no quality of life. At the moment the drug he is using is making him like a zombie. His eyes flicker all the time and he shakes the whole time too. He still has absences, body jerks and body drops. It's stopping the TC's but he just cannot function properly and spends most of the day sleeping.

They tried to reduce the meds but he would have a TC straight away and as most of his TC's are nocturnal it's not safe.

I think they are holding on to the fact that anything is better that this is.

I just hope it works for him. Even if it's only 20% decrease in seizures.

What is the EEG neuro feedback that you are talking about, I don't think I've heard about that one.

I do worry about him. How long can his body take this? His first TC was when he was 3 he is now 8 and his seizures have never been controlled.

 

[Bernard]

EEG neurofeedback is basically a means to train the brain to operate within normal parameters.

EEGs meaure brain activity in several frequency ranges - alpha, beta, theta, delta and gamma. EEG leads (attached to the outside of the scalp) feed a computer info on brain activity in real time and a computer then gives the patient feedback that allows him/her to know when the brain is doing well (or better). Over time, a patient can learn to regulate the brain activity and bring it back in line with normalized parameters. When this happens, seizure activity diminishes.

 

[Rachel]

Wow, that is cool. I wonder how hard it must be to do it though :?

 

[Bernard]

When Stacy did it, each session took about an hour. They would attach the leads to her scalp with a toothpaste like substance (she always complained that it was hard to brush out of her hair) and sit in a chair playing a handheld Tetris game (to help her concentrate) while listening to tones produced by the neurofeedback computer. She was supposed to try and achieve a steady tone on the computer. It was not difficult though she would sometimes get tired and sleepy during the sessions.

 

[Rachel]

Was there any improvement in her seizures?

 

[Bernard]

Yes. You can read about her story here.

 

[bunkers1]

vns

i actually have a vagal nerve implant. i got it in march '06. i was in the hospital less than a day and was up and around the very next day back to my every day routine. not much pain was involved but the docs gave me some pain killers and i , of course, milked the situation so i got out of doing alot of things around the house i didnt enjoy. i fell a little tingle in my neck if i have my head positioned just right but other than that i dont even notice it. my voice doesnt change anymore and the scars are hardly noticeable anymore. there is a vns support group you can call to see if there is a meeting in your area if you are interested in other peoples testimony on their personal experiences the # is 1-866-598-9336

 

[Bernard]

Thanks. BirdBomb's forum (mentioned above) is also a place where you can find numerous VNS patients and their experiences with it.

Sounds like you had a positive experience with the VNS. Has it reduced your seizures significantly?

 

[bunkers1]

vns

i have only had 4 seizures since receiving the implant. i have had much trouble in the past controling them and it took many years to find the correct medications, which since getting the implant ive been able to reduce the amount of meds but not completely stop taking them. i also have treatment resistant bipolar depression and it helped with the problems associated with that also.

 

[Birdbomb]

It's nice to hear success stories such as yours bunkers. Thank you for sharing. Those who actualy become medication free are rare as this is an ADJUNTIVE therapy.

How long was it until you began to notice improvement?

 

[bunkers1]

vns

the people around me noticed the differences first. it was alot of small things to begin with, for instance my eyes were more open and not droopy with that " drugged up" tired look all the time. about 2 months after it was turned on i noticed that i was remembering things easier and realized that i hadnt felt this good in 12 years!! ( since being diagnosed) i had little trouble with the stimulation though and did have it increased at a very rapid pace. by the 2 month mark i was already at the 2.0 setting, my doc was amazed at how easily i adapted to it. currently im at a setting of 2.5 and i see the doc every 3 months to make sure everything is working for me properly.

 

[RG]

VNS -positive experience

We are new here and have also noticed that people tend to respond to VNS forums when they have had a negative experience. Like the last few posters, we would like to change that and report that the VNS treatment has been working well so far. My husband was implanted in October 2006 at Mayo Clinic and noticed a difference right away. Within a month he felt his memory and cognitive ability improve and many people have also noticed a positive change. His implant current is now at 1.0 and the magnet current is at 1.75. He usually has an aura (warning) before his seizures start and has been able to stop the majority of his seizures by using the magnet. A few times he was too late with using the magnet and had a breakthrough seizure. He recommends that at the first sign of an aura to use the magnet right away to stop the seizure. He has had seizures for many years now after suffering a head injury and is able to identify his warnings. He's been on Dilantin, Tegretol, Carbratol, Topamax, Lamictal, Trileptal and Keppra. He tends to become resistent to his meds after awhile. He is now on Keppra and Trileptal along with the VNS therapy. We're hopeful that he will be able to reduce his dosage eventually. ~RG

 

[Bernard]

Hi RG, thanks for sharing your positive experience and welcome to the forum. :hello:

 

[RG]

VNS -positive experience

Thank you for the warm welcome, Bernard. My husband and I write together. He is on the computer all day at work and needs a break so I am the typist. We've been reading the VNS forums for several years and often felt discouraged towards VNS therapy. He wanted to be sure to write if he had a positive experience to encourage others to consider it. It helped reading people's experiences so we knew what to watch out for. We made sure to find an experienced surgeon since it's important where the wires are attached on the Vagus Nerve. ~RG