VNS Message Board

VNS DISCUSSIONS => Step by step Epilepsy => Topic started by: sparky triggers on August 28, 2011, 01:51:22 AM

Title: roll call for scar tissue in the vagus nerve
Post by: sparky triggers on August 28, 2011, 01:51:22 AM
Suffering from severe nasea and off and on diarreaha.
found that the vns device was 'malfunctioning' high impeadance 7,last year after explaining all physical issues for a long period of time.originally i was considerd mental-verses physically that there was something going on for too long.
throttling throat pain,shocking chest and throat pains,fainting,increased seizures,vomiting,diarreaha,lost 15-20 pounds,became extremely depressed at the ongoing daily grind of being sick and told i wasn't.
epilepsy is tough enough.
first set of x-rays said no fracture in the lead.after malfunction was found.surgeon told neuro to shut off device and he would not do surgery to risky.
neuro doc said no no device needs to stay on,we need different surgeon.

5 months later new x-rays revealed fracture in the surgeon set surgery date.

about 2 and a half months since surgery and having severe nasea problems.neuro decreased 2 seizure medications.has turned the settings of the vns device up a few times.

neuro can not believe nasea is due to device.

my body is trying to heal and it is having a really hard time.5 days a week i receive seizure medications through infusion.weekends the out patient place is closed and we have to restart all over on monday.

primary doctor has put nasea medication plan together.scopolomine patch,zofran and is helping .

neuro doctor doesn't understand the need for nasea medications.the epilepsy medications are hard enough on my gut after all this crap.

anyone have side effects from malfunctioning device and or scar tissue?

until this site,i am the only one my docotor says she knew of having problems from the device.asked me 'well how did that happen/'

i want to get well.i have a tbi and epilepsy from  motor vehicle accidents.i never understood the possible problems someone can have from the vns device.when it was implanted,i wasn't able to make full decisions with out help.   still due to tbi,i need help in certain areas because cognitively understanding things takes time and lots of visual pictures.

not wanting to place blame.honestly-i am not alone here at this site i can see.blessings to all of you.the device did help me originally for awhile.

Title: Re: roll call for scar tissue in the vagus nerve
Post by: Dispatch on September 17, 2011, 09:22:05 PM
 ;D HI sparky triggers and WELCOME to the Board!  Sorry I haven't gotten back to your post--I've been away in England visiting family and am now just getting my act together a lil bit!

Hope you're doing better.  WOW, your story is alot like mine.  I want you to make sure you've read the Patient and Physician manuals, and ask your doc if he/she read the part in the manuals that VNS is unapproved for use in persons with a TBI.  I have a TBI and seizure disorder from that, used VNS for depression, and in the end, have had total explant due to the side effects and problems VNS caused me.  I was never told it was not an appropriate form of treatment for my health history.

The nausea/vomiting meds worked for me for a short period, but it was the VNS causing all of that for me too.  It's a side effect whether you have a TBI or not, but it seems like it is worse when there's brain injury present.  Meds and VNS are hard on your gut.

Please do keep us updated!  Take care!