VNS

Finally made it outta surgery. Had 5 seizures after. Been a long road. Pray I don’t lose my job due to missing more work than I planned for. Prayyyyy please
#Epilepsy #VNS #BipolarDepression #BorderlinePersonalityDisorder

So... I have many chronic health conditions. One of them is treatment resistant depression. I have struggled with depression for over 30 years. I have tried many forms of treatment. The latest venture is having this device implanted. My surgery was around a month ago and I feel like I am just about healed. The device was recently turned on and I’m anxiously awaiting the effects of its service.... I hope to keep track of results here. #VNS #vagus Nerve Stimulator Implant #Depression #TreatmentresistantDepression

3 years ago and today!!! We are so thankful to see how far he’s come! In the first picture, David was in the process of coming out of a pentobarbital coma. Today he is out of school as he’s been having seizures, but he is in good spirits! So thankful for change and progress! #FebrileInfectionRelatedEpilepsySyndrome #VNS #Epilepsy

It has been a few months since David’s surgery, so I figured it was time for another update.

Thankfully, we have only seen improvements since David’s surgery. We’ve been able to completely wean off of Briviact. When we tried to wean medication pre-surgery, we would often see seizures that would start trending, and lead to a visit to the ER. While we’ve seen seizures weaning post-surgery, they have lessened significantly in length and severity. We’ve also seen a decrease in postictal recovery time.

Some of you may be thinking “you’re still seeing seizures?” Let me explain.

The device has to learn seizure patterns before it can stop them. So while weaning Briviact for example, we would see a few seizure 2-3 days after a drop. After the first one, 12-24 hours later, we would see another one. But after the second, sometimes third seizure, the implant finally caught on to what was happening and was able to prevent further seizures. (When we see him having a seizure, we pull out a special magnet and swipe it across the implant, which sends an extra strong shock to his brain.) After the last drop (when he wasn’t taking Briviact at all), we saw a mini-seizure (the first one being about 40 seconds, and the last one about 5 seconds) every night for a week. They seem to have stopped now, as the device has picked up on what to do.

In addition, we’ve seen cognitive and behavioral improvements. David is finally at a place where it seems he can learn and improve upon learning, rather than staying stagnant. He still has a very difficult time reading, but according to testing at the hospital, the reading difficulties are due to where the seizures are located in his brain (he has focal/partial complex seizures). We’re still looking at ways to help with reading. We’ve tried the Barton method, which helped some, but he couldn’t move on to harder words. It seems to be a matter of his brain not working quickly enough to put together complex words. The last time we tried the Barton method was pre-surgery though, so we’ll be giving it a try again this summer. If you have any suggestions on methods that might help, please let me know!

Behaviorally, David has improved so much. We were able to wean off of Clonidine and Strattera, both of which were used to counteract the behavioral side effects of his anti-seizure medications. We aren’t constantly wondering if David is going to go into a medicinally induced rage. He’s more gentle and friendly to be around. Even a friend of ours who knew David pre-FIRES, and has been with us through all of this, was almost in tears after babysitting David a couple of days ago, telling us just how much improvement she sees in him. Sometimes its hard to see improvements when you’re in the thick of it, so it’s nice when someone else actually sees them too.

Continue reading on: davidfightingfires.wordpress.com/2019/06/08/4-months-post-vn...

My daughter had her first visibly recognizable seizure 15 years ago this month (April 15, 2004), it was extremely tough to watch my child go from blank stares that I could not get her to break from to a completely stiff body then full body, uncontrollable jerks. We thought this may have been cause by an illness, a fever until it happened again, and different instances of stares, some quick moments of the jerking. I can’t remember the date when she was officially diagnosed with a seizure disorder/epilepsy but, I know she’s had a long history of mixed seizure types; Grand mal, generalized tonic-clonic (with clusters), myoclonic (jerking), dialectic (staring), nocturnal. All of that lead her neurologist diagnosing her with Intractable& catamenial epilepsy. On March 12th, she was implanted with the Cyberonics SenTiva for VNS therapy to help her with intractable . Intractable are seizures that fail to come under control easily with medication. VNS- vagus nerve stimulation is supposed to help reduce the frequency and intensity of seizures. It’s been 6 weeks/42 days since “implantable parts” have been placed with hopes of helping with her fight against seizures, how is it going? Have the seizures stopped?
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Things are going well! I’m thankful we decided to get the VNS. The seizures have not completely stopped. However, they have NOT grown in rapid intensity like they used to before VNS. In the past, I have watched Kerstin start having small seizures that may start with a stare, then the face twitches increasing to the jerking and the only thing that could be done was staying close to her, reassuring her that I was there, hoping it would soon stop. Sometimes they would, a lot of times they would not, causing a need for Diastat or at really bad seizures she would need 2. The aftermath; she would be so groggy, sleeping for hours and hours. Since VNS placement, when a seizure is spotted, a swipe is given, sends pulses thru the nerve to her brain to slow the activity. We journey on!
💚 💜
#VNS #Epilepsy #SeizureDisorder #Seizures #IntractableEpilepsy
#Myoclonic
#Dialeptic
#NocturnalSeizures
#CatamenialSeizures
#DandyWalkerSyndrome
#SpasticQuadriparesis
#DevelopmentalDelay

I was wondering how many parents here has a children with a seizure disorder/epilepsy and have or are considering Vagus Nerve Stimulation (VNS) therapy?

Our neurologist has suggested it because my daughter continues to have breakthrough seizures while being on several epilepsy drugs. Her neurologist has stated continuously that he doesn’t want her on the higher dosages long term because there is always a risk of the meds causing other health issues or just doesn’t work, I.e., allowing room for those breakthroughs.

What are your thoughts about VNS?
#Epilepsy