Friday, August 19, 2016

VNS Update

It's been almost 3 months since Soren had his VNS implanted.  The surgery went really smoothly and Soren recovered well.  They started the device at a low setting.  Then we went in every 3 weeks to have the data downloaded and the device turned up a bit more, working on getting it to a therapeutic level.  We've been told to be patient.  That it can take up to a year to get the setting just right.  Now we don't go in for another 3 months for an adjustment.  

Overall, we've seen a definite decrease in seizures.  The VNS seems to catch Soren's small myoclonic seizures just as they are revving up, stopping them in their tracks.  And we've been able to use the magnet and wave it over the device to stop some of the bigger tonic-clonic seizures.

It's the early morning seizures that he has upon waking or right after waking up that are still breaking through.  They are really big and the magnet just doesn't stop them, no matter how many times we wave it over the device.  It's frustrating because those are some of Soren's worst seizures and it just starts his day off terribly.  But, again, we have to be patient.

The VNS goes on and off in cycles.  So on 30 seconds, off 5 minutes.  And we've noticed a funny side effect when it turns on during these 30 seconds.  See, the Vagus nerve is near your vocal cords.  And Soren's Vagus nerve now has a lead coiled around it.  So when the device is cycles on and he's talking, it makes his voice vibrate.  Soren happens to find this very amusing.  In fact, it's led him to making funny vocalizations and cracking himself up.  I wish I'd caught it on video.  

So, we still have a ways to go for better control, but we are happy that we took the plunge and got Soren the VNS.


1 comment:

jimm nancy said...

My son started having seizures he had his first seizure at 6 year within 12 hours We spent 6 days in the hospital where different doctors looking at different things couldn’t agree on why he suffered a seizure… He has had genetic tests including a muscle biopsy. I used to wonder why my son were getting so many vaccinations shots at such a young age, Still the doctors wouldn’t admit it was the vaccination shots. After his 2nd seizure I wouldn’t allow my son to be vaccinated anymore but I believe the damage is done. It was during a casual conversation with a friend that I learned about Doctor Lawson Bryan i was so glad to know him on how his herbal product work, I contacted Lawson and explain everything to him and make purchase of his product. few days later i received the herbal medicine my son used it for 3 mouths i notice improvement in less than a month my son was totally cured of seizure now he have not experience any sign of seizure. Contact doctor Lawson Bryan on this + 1 (979) 475-5130 or e-mail