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Author Topic: VNS Implant turnoff  (Read 4694 times)
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JoshMom
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« on: September 19, 2011, 08:26:56 AM »

Iam new to this message Board so forgive me if i posted in the wrong area.
my son has the VNS implant he had it done in 2006 and now the battery is dead. it didnt really help much with his seizures he was still on 2 diff seizures medicine and try a 3rd medicine.. Doctor has maxed Josh out on his implant meaning it was set up as high as it could go and it still didnt control his seizures very good at all, when the battery went out Josh started to feel better. became more active. and was actually more vocal even thou he cant talk. he is eating better so I decided to Not let them re-activate it. I didnt want to put josh under again for something wasnt benefiting him much. the doctor couldnt seem to understand this. he got mad at me and started to question me as a mother doing the right thing for my son.. he made me very angry. he got a few choice words from me.   I was told that it wouldnt hurt Josh to leave the implant in i was wondering If anybody has had their Implant off and left it in and if so, did cause any thing to happen?
Appreciate you time and feedback


Melinda
mom to Josh ( 21  yrs old ) CDG
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dennis100
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« Reply #1 on: September 20, 2011, 11:18:55 AM »

My neuro encouraged me to keep it in place, saying that no harm will come since the device was turned off. I had it explanted anyway. It was a constant reminder of my near death experience with the device. I hope your son's doctor explained that the electrodes are seldom removed due to the dangers involved and scar tissue issues. Scar tissue from the electrodes can also cause problems later in life. I'm dealing with that now.


Chances are you and your son were not informed of this prior to surgery. That seems to be Cyberonics' modus operandi.


You should check out the Programming Malfunction Section

http://www.vnsmessageboard.com/index.php/topic,3975.0.html


If the VNS can change settings on it's own then it's conceivable the VNS can reactivate on it's own. Take my advice and have it removed.


WISHING YOU AND YOUR SON THE BEST
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Birdbomb
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« Reply #2 on: September 26, 2011, 02:50:20 AM »

Remove it.  It will be the best thing in the long run.
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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!
JoshMom
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« Reply #3 on: October 05, 2011, 01:33:38 PM »

I had called the cyberonic manufactor of the VNS implant and talk with them awhile, they was upset cause i wasnt gonna get a replacement battery for it and gave me different Doctors within my area for me to check with. I didnt ask for that..I told her there is no way Iam gonna have it replaced when it didnt do no good in the first place. and she told me that leaving the implant in wouldnt hurt my son, she said if it was activated it would be in his body so with it Not activated it isnt gonna do any harm...she did say that if Josh fell or got hit hard in the chest it could cause some damage thou...I've had this neuro for my son for 7 yrs and now with catching him n all the lies its hard to trust him anymore and you cant stay with a doctor you dont trust..and I dont wanna have to put my son under unless its medicaly nessacery.
  iam gonna get another Neuro opinion maybe even a few

thank you for your replys

JoshMom
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