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vns

My 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

My son also has generalized seizures, and he has the VNS after attempting 11 different meds at that time.

 

My son was implanted at the age of 5 years old. It was done as an outpatient and we were home that night.

 

right now he is having about 15 lightening quick drops/jerks/absences with an occasional tonic clonic (grand mal).

 

Before he was having 100's a day and had to wear a helmet.

There are a lot of pro's and con's on the VNS but for my son's situation it is helping greatly.

 

Missy, mom to Kevin
10 Years old,
Doose or MAE Myoclonic Astatic Epilepsy

Re: vns

 

My name is Nancy and I am 34 yrs old.  I was iimplnated at that age last sept 20th.  I had heard some things thta made me scared but my neuro gave me no choice.  He told me itwas the only option for me .  I was not a candidtate for brain surgery. 

I have a syndrome called Mixed Seizure Pattern, with 6 types.  T/Cs, Drop Attacks, Absences, Tonics, Simple ANd COmplex Partial szs.

 I have  combo of both Gen and Pc szs adn the VNS is working VERY well for me.  Right now it is at 1.75 amps adn the last log I turned int omy neuro had 19 sz-free days and 4 days that had szs in them and one night with a sz in it.   He etold me I might be one of the lucky ones and be inthe 5%    population that goes sz-free with a lowered dose of meds.  We are getting closer adn closer to tht point intime.  the Drop attaks are the las ones to tryadn get rid of.  They are stubborn. 

Don't cancel it is worth it down the long run for his ake.  It will  give hiem reliefl.

 Some  docs don't turn them onuntil weeks after they are implnated adn some immedeatley after the suegery.  My neuro had them turn mine on right from the OR.

They surgery takeks an hrto do.  The make an iscnsion in the left shest where  the generator goes and then they thread the lead along the skin of the neck up tothe vagus nere adn wrap 3 electrodes around the nerve in 3 different places and then anchor them in place.  Then they attach the end of the lead to the generator adn turn it on after checking it adn the battery before leaving the OR.

Most pts are sent home the same day.

The cut intthe neck is the mostpainful one.  I will not lie to you abou that one.  IT does HURT!. 

THey make you wear a magent around your wrsitto swipethe device if you feel an arou or a sz coming on or during a sz.  That is an atetempt to stop it.  As it gets turned up it will have more of an effect on teh szs adn be abel to stop more of them or the aura an be albe to abprt the szs compltetly beforethey even start.  but that will tale some time.  Mine can already dothat becasue I ahve been worked up tothatpoint.

 Need to know more e-mail me at la_desierta_nina@yahoo.com  I will try and answer bettter than on here.

I hope I have helped some. 

Nancy

 

Re: vns

THANK YOU ALL for your input on this. I am having a meeting with his neuro and the surgeon to hopefully put my mind at ease! All of this info is very helpful,I just need to stop reading about all of the bad stuff!!!

Thanks,ljc(Lisa)

Re: vns

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

Re: vns

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

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

Don't rush into anything!

I have had 3 surgeries.  I have had 2 brain surgeries and wanted to have a perfect life.

I tried medication and I had children which I was blessed w/.  I had the VNS in 2000.  It helped a little.  I have had the battery changed.

The seizures still occur but the duration is not as long.  It helps. 
1/3 complete control, 1/3 partial, 1/3 no difference

When I break a leg or arm and the orthoped. wants to do a special check on the MRI he can not because of the VNS.  IF I was at the University I can probably get it done but not at regular hospital.   A CT can be done w/ no problem.  It is a limitation.  I would think about it. 

Re: vns

i personally just had a vns implanted on 2/7/08. it doesnt get turned on tilll 2/21/08 after i heal. the surgery it self is not very long, i ended up in hospital monday though cuz of t/cs at pre op testing so my epi spec admitted me till surgery and i stayed till sat afternoon to make sure no problems. the one thing i can say is the day of the surgery and the next day were very painful and i was taking all the pain killers they would give me. by saturday it was much better and i was taking just regular pain meds for chest, neck didnt hurt at all any more. the thing is to keep him from bendng over till healed. i am still holding my hand over my chest cuz it feels like its going to move or something though i know it isnt if i dont bend. i know qute afew people that have had vns for years and have had no problems and it helped them. yes, like you i heard a few horror stories but i find as soon as you mention something people tell you the bad stuff. its like when your pregnant and people just have to tell you there horror stories with preg and delivery. so i took the thoose stories with a grain of salt when making my decision. if there is a posiblity of working its worth it. i personaly have uncontroled primary generalized siezures so i figure its worth  try. i have been on every med under the sun and have constant epileptic spikes on my veegs and eegs.

God bless your family,

banffgirl 

Re: vns

The VNS might be a miracle or a curse. IMO, there are a few other alternatives (EEG neurofeedback, neurobehavioral therapy, LGIT diet, modified Atkins diet, ketogenic diet) which can be tried first with less risk. If they don't work, you can always try the VNS. My 2 cents~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Check out my chart of alternative epilepsy treatments.

Re: vns

VNS has not been tested on children.  It does not have FDA approval for kids under the age of 12 years.  Although many children as young as 18 months have been implanted, be forewarned, should your child develope any severe side effects or be damaged in any way, Cyberonics will claim user error, even though this device is marketed off-label.

I know a lot of kids have been helped but I know just as many have been harmed.  Learn all you can!  Download and read the manuals.  Talk to everyone who has a VNS good results, bad results, adults and parents of children.  Go into this with your eyes open.

Statics are misleading.  MRI's may be a problem in the future. Not to mention, once it's implanted, many doctors will refuse to treat you because they don't deal with the VNS.

Good luck in whatever path you choose. 

 VNS Message Board "If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)

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