• English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

Vagus Nerve Stimulation – Alternative Epilepsy Treatment

Vagus Nerve Stimulation – Alternative Epilepsy Treatment

Hugh's epilepsy has been a major factor in his life for as long as I can remember.

His first obvious seizure happened at around 10 months but it's highly likely he was having seizures before this; he was already undergoing investigations for epilepsy due to the fact he was losing skills and regressing in some areas of his development and his brain MRI had flagged up that seizures would be highly likely.

When the epilepsy diagnosis came, when he was just over a year old, I assumed it would easily be controlled and that life would return to normal. Instead I discovered that Hugh was one of the 30% of people who never control their epilepsy through drugs alone. We tried 6 or 7 different anti-epileptics drugs in varying combinations but eventually it became clear that Hugh was in the category 'medically intractable'- the drugs don't work.

We tried the ketogenic diet next and the success of this was astounding; within weeks his seizures drastically reduced. We started going out as a family again, we even managed a holiday to Wales, things that were impossible when his seizures were at their peak. Hugh remained on the ketogenic diet for three years but seizures started to creep back in. Thankfully though, never to the degree they were before we started the diet.

The next course of action in trying to control Hugh’s seizures were surgical options – either brain surgery or a Vagus Nerve stimulator Implant.  An MRI of Hugh’sbrain couldn’t find a single point from which his seizures started (his whole brain is affected) therefore he wasn’t eligible for brain surgery.  Instead, we opted for the VNS.

Vagus Nerve Stimulation (VNS) is a treatment for epilepsy where a small device is implanted under the skin in the chest.

This device, similar to a pace-maker, is called a generator. The generator is connected to a thin wire, which stimulates the vagus nerve in the person’s neck at regular times throughout the day. This sends impulses to the brain, which helps to prevent electrical activity that causes seizures.

We were told at Hugh’s pre-operative assessment that about a third of patients see significant improvements, a third some improvement and a third it makes no difference at all.  Side effects, other than those associated with a general anaesthetic are apparently minimal and include intermittent hoarseness and difficulty swallowing while the device is sending electrical impulses.

The surgery to fit the VNS was relatively straightforward and Hugh was discharged the following day with a dressing on his neck and another on his chest.  At no point during the surgery, does the surgeon operate on the actual brain.  Hugh recovered quickly and needed minimal pain relief over the following days.  Although the scar on his chest is a raised keloid scar, the one on his neck is bravely visible. Two weeks after surgery we returned to hospital for the device to be turned on.  This was all done electronically with a large ‘wand’ held over the device in his chest and it was all programmed through an iPad.

Over the coming weeks and months, the settings were tweaked and adjusted to try and get the best seizure control.  The length of time between the impulses sent to the brain can be adjusted as well as the strength and duration.  In addition to the automatic impulses from the device we have a magnet which we can swipe over the generator in Hugh’s chest to give a booster impulse at the start of the seizure, with the intention of interrupting the brainwaves and stopping the seizure or reducing the severity or duration.

We were warned that it may take time to see an improvement in Hugh’s seizure control and initially I was worried it had made them worse.

The frequency increased but thankfully they were less severe and didn’t require hospitalisation as often.  With time though, the frequency reduced too and we began to get longer and longer gaps between significant seizures.

After less than three years the battery on the VNS ran out, which was much quicker than we expected. The replacement surgery was quick and the recovery even quicker than last time.  And the bonus was that Hugh was fitted with the newest VNS device which has an ‘auto-stim’ feature which automatically sends an impulse to the brain when it detects an increased heart rate which could indicate the start of a seizure.

Hugh has had a VNS in place for four years.  He is not completely seizure free but we have had amazing success: It’s been one whole year since he’s had a major seizure, 16 months since he last needed rescue medication and over two and a half years since he was lasted hospitalised for seizures and needed IV drugs.  For a child that was averaging hospital admissions every three months, that’s a great result!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emma Murphy

Meet Our Blogger

I’m Emma, a special needs teacher and Mum to two boys and a slightly crazy springer spaniel. My youngest son has a rare genetic disorder called FOXG1 syndrome and severe epilepsy. I share our stories in the hope of raising awareness and acceptance of people with profound and multiple disabilities.

View Emma’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 4 months on

Purchases on £99+

UK Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of £99+:

No Interest if paid in full in 4 months on purchases of £99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 4-month period.
  • No interest will be charged on the purchase if you pay it off in full within 4 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • Any remaining balance due after the 4-month promotional period or any transactions under £99 will be charged interest at 19.9% p.a. (variable).

Purchases of £98.99 or less:

Buy now and pay over time with PayPal Credit when you spend £98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • In order to maintain the 0% offer, you need to keep up monthly repayments and stay within your credit limit. Credit subject to status. Terms and conditions apply. UK residents only.

Please wait...