Vagus nerve stim

[Taylor's_mom]

Anyone tried this? Results? My daughters dr brought it up as something to think about


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[epileric]

There are a few people on this site that have a VNS but you might want to check out this VNS Forum.

VNS Message Board

 

[valeriedl]

I have one and it's helped me a good bit. I am still having seizures and I am still taking meds. But the number of seizures that I'm having and how bad they are has decreased alot since I've gotten it.

If you have any questions feel free to ask.

 

[dennis100]

Don't do it

 

[Cint]

What type of seizures does your daughter have and how old is she? I had it done and it has helped reduce seizures, but not completely stopped them. I also have it at the highest setting. Here is the cyberonics website with more info:

http://us.cyberonics.com/en/vns-the...elcome-to-vns-therapy-for-refractory-epilepsy

 

[Taylor's_mom]

My daughter is four. We haven't really discussed it at any length yet just an option if we can't get her meds figured out. She was doing so great and then she had a growth spurt and had a ton of seizures. She has complex partials. We were at the max dose for keppra for her weight so they added zonisamide (spelling?) and it was fine at first but now she is starting to go backward instead of forward in her development. Which is not good at all. So her dr wants to incrementally back off the keppra and see if it is just having two meds that is causing the problem or what. Kinda just waiting and lowering at this point. She has had allergic reactions to tegretol and trileptol so she can't have those and there was one other we tried that had no effect. I am torn between over medicating my child and hampering her learning and seizure control. There has to be some middle ground here.

I have done a little research on the VNS and it sounds amazing. I have been trying to find a down side and can't seem to find much really. I think we are still a long way off from doing something that invasive but idk. I just want her to be okay.

The going backward in development is freaking me out we are on a wait list to have a development screening. It is pretty bad. Before she was able to say all of her letters and numbers by sight and she cannot now, she is slowly forgetting them and we work knit all the time. She did know the sounds each letter makes and now knows none. And the other thing is she has this book of like them twenty four piece puzzles that she has been doing over and over for like a year now. She could complete one in less than a minute and now cannot complete one at all and gets really upset after a few min.

I don't know what to do.


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[Kaitybugsmom]

Don't do it

Im curious to know why you say this. Did you have a bad exerience? Just wasnt the right choice for you? If you could give a little more information other than just 'dont do it' may be more beneficial.

 

[Kaitybugsmom]

Taylor's Mom - Sorry you guys are going through a rough patch Im hoping that maybe it is just the combo of medication she is on. Maybe decreasing the Keppra will help and you will see her moving forward again.

I have also been doing some research on the VNS and it does sound amazing. I have read tons of posts here on CWE from other members that have seen some pretty good results. Like everything else, (meds, dosage, diet etc) I am sure what works wonders for others may not work as terrifically for somebody else. All we can do is try if thats what is needed. One of the things we have done here at our home is cut out the aspartame, I didnt know it was a poison in the body! I havent gone all ban this ban that crazy.....yet But I am cutting things out a little at a time.

Please keep us posted as your daughter tapers off the keppra so we know how shes doing with it and adjusting to the solo med.

 

[dennis100]

don't do it

 

[Nakamova]

dennis -- can you give a bit more info?

 

[valeriedl]

I know it can be removed if it doesn't help. I've had mine since 2007 with no problems.

One of the things is that you have to know when to use it. Before I got it I would just go right into a seizure with no warning and someone else would have to use the magnet on me to bring me out of the seizure. With your daughter being that young does she know when a seizure is coming on and realize that she would need to use the magnet or is it something that you would have to do for her?

It's something too that has to be adjusted to make sure it's at the right 'voltage' (don't know if that's the right word to be using). It's not just something that is put in and ready to go. My neuro started me out at a low setting then slowly moved it up to a higher one, this took a few years, to make sure it's at the right setting to be working for you. After a while I started to know when a seizure was coming on and I'd know to use the magnet to help stop the seizure. I still have the no warning seizures though that I pop right into, but not that often now.

 

[Taylor's_mom]

She has started to recognize when she is going to have a seizure she says she feels spinning in her belly. I'm not sure if it would be something she would be able to do yet or if it would be the once in a while simulations that would help her the most. I am still researching. I'm hoping that her meds being adjusted resolve the problem but if not it is something defiantly worth talking about.


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[dennis100]

Hey Nakamove, google "Medical Devices That Can Kill". I am the Dennis who is mentioned in the article.

 

[Bernard]

TM - We have a trove of discussions about the VNS here:

http://www.coping-with-epilepsy.com/forums/tags/vns.html

Some people have good experiences with it, some have very, very bad experiences - in Dennis' case - life threatening (Medical Devices That Can Kill)

Last I checked:

• ~33% success rate
• potential for very severe and permanent side effects
• expensive and uphill battle with insurance should you ever need to have it removed

I would not consider it unless I've exhausted *every* possible alternative. :twocents:

 

[Cint]

Last I checked:

• ~33% success rate
• potential for very severe and permanent side effects
• expensive and uphill battle with insurance should you ever need to have it removed

I would not consider it unless I've exhausted *every* possible alternative. :twocents:

I'm one of those in the 33% success rate with the VNS, since nothing else worked for me: AED's or brain surgery. The temporal lobectomy nearly destroyed me.

And I do agree with Bernard, I would not consider the VNS unless I have exhausted every possible alternative, especially for a child.

 

[qtowngirl]

Dennis I was wondering too about you just saying 'don't do it,' so checked out your profile. Wow. I never really liked the idea of the implant before, and your experience strengthens that. For anyone else wondering, here's the link:

http://newamerica.net/node/35911

 

[Cint]

Dennis I was wondering too about you just saying 'don't do it,' so checked out your profile. Wow. I never really liked the idea of the implant before, and your experience strengthens that.

They can turn off the VNS, but one can never reverse the outcome of brain surgery.

Common side effects of the VNS are:

~ataxia
~shortness of breath*
~hoarseness
~insomnia
~increased coughing*
~indigestion
~infection
~pharyngitis
~muscle twitching associated with stimulation
~nausea
~pain
~throat,larynx spasm
~vomiting

Or theses could potentially occur:

~Aspiration (fluid in the lungs)
~blood clotting
~choking sensation
~damage to nerves or blood vessels in the surgical area, including the carotid artery or jugular vein
~pulse generator/or lead migration or extrusion
~difficulty swallowing (dysphagia)
~dizziness
~ear pain
~duodenal ulcer, gastric ulcer
~facial flushing
~facial paralysis
~possible tumor formation
~heart rate/rhythm changes
~hiccuping
~left hemidiaphraghm paralysis
~left vocal cord injury
~vagus nerve paralysis
~worsening of asthma or bronchitis
~worsening of cardiac abnormalities, including heart rate and rhythm

According to Dennis' story, he suffered from the cardiac abnormalities, listed in the Cyberonics VNS Patient Manuel. Seizures are dangerous, too, and can kill. If it weren't for the VNS and other methods, I could have died from a seizure.

 

[Bernard]

I didn't see exacerbation of sleep apnea in that list of potential side effects.

 

[Cint]

I didn't see exacerbation of sleep apnea in that list of potential side effects.

Ok, throw that one in.... along with a few others I left out.

 

[suebear]

Anyone tried this? Results? My daughters dr brought it up as something to think about


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Yes, I have a VNS. I can tell you I did have some luck with it but due to my type of seizures (complex partial) the neurologist had to keep fussing with the settings. Something that I did like regarding the VNS is the surgery took place on an outpatient.

Something you might want to ask your doctor is will your daughter be using the magnet with the VNS or no? Another question to find out about ask how long the surgery will approximately be; is it outpatient or inpatient. Another question to find out is what your doctor sees as a prognosis for your daughter by using this item.

Every hospital and neurosurgeon performs differently so I can only provide thoughts to questions that I have asked. I hope it has helped and I wish you the best of luck!