VNS for Maddy May

[Maddy's Mom]

Ever since the disappointing SISCOM results, Dr. B has wanted Maddy to get a VNS so we went to see Dr. M today for a VNS consult at PCH and it's a go. Maddy, 16, wants the VNS so they're going to get it scheduled in the next week or so.

Those of you who've already been through this - is there anything we need to know? How successful was the VNS in reducing or eliminating seizures? Were you able to eliminate or reduce meds? Any tips for a speedy recovery? How was the scarring?

Thank you!

Lorri - Maddy's Mom

[Paul from Australia]

Hi Lorri.

Here is Grant's story.

Grant has LGS, so drug therapy simply doesn't work except for controlling the tonic/clonics when he has a bad seizure.

Grant had the VNS implanted 7 years ago when he was 11.

He was in hospital for only a few days and recovered well; no infections.

There is a small scar at the neck.

The VNS has had zero impact on reducing the frequency or intensity of the tonic/clonics. However it has a profound effect in reducing the frequency of the little seizures such as myoclonic jerks, drop seizures etc.

The only potentially negative side is that if the implant did one day have to be removed, all the wiring could not be removed. There is always a possibility of infection, something that has never happened for Grant.

Best wishes to you in your decision making for miss Maddy.

seeya,

Paul, Alison and Grant in champ mode :)

[langansmom]

Hi there! I know there are several vns parents here, so I am sure the others will be chiming in.

Langan got the vns three years ago today, actually. She was 3 1/2 years old and it was the hardest decision we have had to make for her. But she had failed every medicine, was having 8 minute seizures almost every night and sometimes twice a night and was going into status on a regular basis. After her last status episode, our neuro was very frank with us that she just didn't know how much longer Langan's body could take it. That was our wakeup call. We scheduled the surgery and flew up to Pittsburgh for the consult and surgery that next week.

The vns has been both the most difficult decision and the best decision we have made. Our neuro told us that in her experience even the kids who don't see better seizure control still see improvement in attention, mood, etc. We saw that immediately. In fact, Langan started walking only a few weeks after she got the vns. Knock on wood- we have not had a status episode since that date, and her seizures have greatly reduced in number. Also, her recovery is much quicker than before the vns.

The down sides: No one warned us about how bad the neck incision would look right after surgery. The brain surgeon who did our consult made it sound like a playground scratch. I guess the old saying "it's not brain surgery" made it no big deal to him. It was a real shock to us. It looked like someone had tried to saw her head off. I still clearly remember my husband seeing her in recovery and saying "Oh my God, what did we do." That said, it healed VERY quickly and now cannot even be seen unless you really search for it. The incision on her chest also healed very well, although it is more obvious than the one on her neck. Also, Langan didn't want to eat or drink for a day or so after the surgery, so I think she must have been sore. And there was this vibration in her voice initially whenever the vns activated- but that disappeared over time.

The up side: As I mentioned, her attention and development improved. Seizures decreased. We changed her seizure meds at the time but have not had to go up on the dose. She is on a pretty small dose (although she always does best on small doses). Langan is just plain happier. I don't know if it has anything to do with the vns or what, but the timing makes me think it does. Maybe the lessening of seizures makes her feel better. Maybe she sleeps better and that makes her happy. Who knows. I just know that the child we lovingly referred to as "Osama Bin Langan" is a much happier camper since the vns.

Like the meds, the vns takes some adjusting. Our neuro has a protocol on adjusting it, and Langan has been on a rapid setting for at least a year now. But it is not a situation where if it doesn't initially work then it is a waste of time.

Our neuro said that kids with metabolic issues do the best with the vns because they just can't process the seizure meds correctly. I think that is why we are seeing positive results. Not sure what Maddy's issues are but wanted to add that.

Sorry to ramble! Hope this helps!

(((hugs)))

[Kate]

Laura's had her VNS for three years. We saw no improvement for the first year but after that we have seen a reduction in seizures. We don't find the magnet works for stopping a seizure but she does have fewer seizures start.

Laura is still on three anticonvulsant meds but our aim was not to replace meds but reduce the number of szs she was having with meds.