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Author Topic: Seizure Causation and Choice of device  (Read 6796 times)
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Joni K
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« on: May 29, 2011, 08:32:07 AM »

My son is about to turn 14.  He is scheduled to have a VNS implanted in June.  He had his first seizure (grand mal) in August 2007.  MRI, CAT and EEG showed nothing during ER visit.  He had another grand mal at school 6 months later.  Pediatrician referred us to neurologist after that.  He currently takes three seizure meds and has breakthroughs.  He has partial complex temporal lobe with secondary generalization.  He can't have surgery because he processes language in right temporal lobe.  He went from being A/B student to D/F student.
Two years after his first seizure, I found out he had been in a car accident 3 weeks prior to his first grand mal.  The car he was riding in was going 45 mph when it struck a car that pulled out in front.  Both cars were totaled and had to be towed.  Nothing in his medical history explains sudden onset of seizures.  Neurologist says tbi seizures occur only if a person is in a coma or an object penetrates the skull, but I have seen articles to the contrary.
Is VNS safe for tbi related seizures?  Can children get the RNS?  My son likes sports and acting.  He is worried VNS wires will limit him.  I would like to limit the number of implants/surgeries he has.  I would like to make the right decision first time around.  He really wants to drive when he is 16.  I appreciate any help and advice.
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Dispatch
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« Reply #1 on: June 05, 2011, 10:32:25 PM »

 Smiley HI Joni K and WELCOME to the board!  Thanks for joining and sharing!

WOW--I get blown away each time I read new stories from new Members.  My VNS nightmare began when I was implanted for depression back in 2006, and at that time, was never told by my docs or Cyberonics that TBI is an exclusion for use of the device-it has never been properly tested on people with TBI, and as a matter of fact, people with TBI were excluded from the studies.  To the best of my knowledge, there still have been no formal studies for this subject at hand.  Well, yes there have been studies done quite underhandly, and I was used as a guinea pig without my consent and the end result has been horrible.  My brain/skull was never penetrated, and I have a TBI that has caused seizures, and life has been that way for me since the 90's.  My husband just recently develpoed seizures as well, medical condition related, and he has never been in a coma nor his brain penetrated.

Cyberonics has a patients manual they used to give out after the patient was implanted.  You can access the manuals from this site in the Articles and Links section, you can ask the doc, or you can call Cyberonics and request one.  They have their website as well & you can access the manuals there.  Please read the WARNING section, that's where the exclusions are.  I'm not saying VNS will not help your son, nor am I saying it will hurt your son.  I am saying it has the potential to do both by my personal experiences with the device.  I have had total explant and I am managing ok.  Please keep doing your research, and consider a second opinion as well.  Hope to hear from you again soon!  Take care!

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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
Joni K
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« Reply #2 on: June 08, 2011, 10:00:57 AM »

Hi Dispatch,

Thank you for the information and encouragement -- That surgery date is coming up quick!  Fortunately, I was able to get an appointment with the neurologist next week, so I can ask him about RNS as an alternative to VNS.  I'll let you know how it goes.  Were they able to remove your VNS wires from your vagus nerve?  Are you able to drive?  I hope you are doing well.

Thank you again for your post.
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Birdbomb
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« Reply #3 on: June 18, 2011, 05:05:29 AM »

Better start hunting for another neuro not on the Cyberonic$ payroll.  And RESEARCH! RESEARCH! RESEARCH!
I cannot stress this enough. My vns was implanted in 02 and explanted in 07 but I have to live with the electrodes on my vagus nerve forever.  I can't get an MRI and still have residual side effects.  This is very scary because an MRI is a highly detail image my neuros, rheumatologist and bone doctors always want and try to order.
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Joni K
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« Reply #4 on: June 18, 2011, 12:15:01 PM »

Hi Birdbomb,

Here's an update.  I met with the neurologist and he explained that the RNS is not available for children yet.  Then a friend of mine got me to talk with his son-in-law, who is a resident in neurosurgery.  He advised me to put off the vns and have more testing to see if my son is eligible for surgery.  He said vns is a last ditch effort and should not be done unless all other options have been explored.  He got me in touch with the neurosurgeon who does both brain surgery and vns.  What a relief! 
Now the plan is to get a PET scan and a WADA test to see if they can surgically remove some or all of the problem area.  I will give an update once the test results are in. 

Thank you all for your help and support.
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Birdbomb
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« Reply #5 on: June 19, 2011, 04:52:06 AM »

<snip>...... He said vns is a last ditch effort and should not be done unless all other options have been explored....<snip>

This is the absolute truth about vns.  Surgery cannot be reversed.  Once you cut into the body, it is forever changed, even though some or all the components may be removed, there will be residual problems.

I am happy you have found an honest doctor.   It seems the Cyberonic$ gravy-train brings out the greed instead of the need to heal, which is an abomination to the medical industry.  Too many innocent people have been implanted all for the sake of money.  We wish you and you son wellness. And if it's no bother, please keep us up to date on his progress. 
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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