Still having seizures after brain surgery and VNS implanted.

[abbygage]

Brain operations to remove scar tissue hasn't helped. They put in a VNS and still having small seizures.... any other ideas?

[Paula-38]

Hi abbygage, I am so sorry to hear that you have had brain operations that haven't agreed with you to remove a scar, I have heard of VNS when someone has refractory epilepsy bur because I am not medical so I don't know all the intracies of it.I don't know your medical history either, how long you have had seizures/epilepsy, and/or what medications you have tried and tested.

Luckily I haven't had any brain operations but I take medication and it works for me. I feel guilty to say that I have been free since 1993.

I did suffer from status epilepticus when I was little and it was a change of medication that did the trick.

I suggest maybe ask your neurologist what medication is suitable for you is about all I can say really. What seems to trigger your seizures off? Try to avoid the triggers if possible. I will try and see what else I can come up with.

[abbygage in reply to Paula-38]

Hi Paula, thanks for replying. It's my son that was diagnosed with viral encephalitis when he was 8. Didn't start having seizures until 17 yrs old. We had tried seven different medicines with him nothing ever worked. The did brain surgery at Mayo in Roch. MN and a few years later the scar tissue from the surgery caused more seizures. When he was 21 they were going to have surgery again but the scar tissue had spread and it wasn't possible. Currently he has a VNS in which they have adjusted a few times. He is taking two medicines Vimpat and Trileptal. I'm hoping they come out with another more effective one for him. Again, thank you for replying. Happy Holiday's

[Paula-38 in reply to abbygage]

I am so sorry to hear that your poor son has been ill all that time but it was 9 years later that he started suffering from seizures which is common even years after encephalitis. I am also sorry to hear that several medications didn't work. Aww. I was offered deep brain stimulation for OCD but apparently because I had had encephalitis and taking anti÷epilepsy medications they didn't want me to be the guinea pig . Apparently the DBS can cause a 'brain infection' like encephalitis so they said that I wasn't a suitable candidate for it. I believe that it CAN also cause seizures but everyone is different and there are SO many complications with it.

It 'looks like' that your son was not a suitable candidate for it either, even though they do use it for seizures/epilepsy too. I would like to medications that your son has tried if you don't mind. I will share with you what did/didn't work for me if that may be helpful although what works or doesn't work for one person will be different for someone else.

Mysoline Tegretol and Diazepam didn't work, so they changed me to Phenytoin and Clonazepam when I was 10 while I spent six weeks in hospital with my Mumand over a year, then a further two years etc I was having less and less seizures and the latter did the trick whilst avoiding the trigger which was picking up tonsilitis the flu a cold cough etc especially if I had a high temperature.

But as an adult I have had what ''used to be triggers'' and when my Mum "used to"expect them and I would be prepared but strange nothing happened but I was in my late teens & early 20's then and I have been fine since then.

What triggers your son's seizures off?

[abbygage in reply to Paula-38]

I really don't know what triggers them off. I know that in one case he had missed his dose of meds. He now is 31 years old, owns a house and has two children and doing alright. I'm just nervous for when the next seizure will come. I just wish they could get rid of the scar tissue that's causing it all. : (

[abbygage in reply to Paula-38]

I wish I could remember all the different meds. he has tried. It's been so long ago. I remember some would make him have real bad mood swings and some didn't do any anything to stop the seizures.

[Paula-38 in reply to abbygage]

It's such a worrying time for you especially if you have no idea of what triggers them off as that wouldn't help. Have the doctors/ neurologist said what they think triggers them off or are they in the dark about it too?Hmm, I do know that missing out on medication can trigger them off.

My Mum 'used to' always say to me (when she was alive), that she was told by the doctors at the hospital that I must never miss a dose out and I never have. My Mum always lived in fear of me having one, she suffered from severe anxiety, panic attacks and depression which was not helpful to me at the time. I'm sure that she would have empathised with you A LOT! When I first left home I know that she would always ring me up to ask if I had had my meds which I had done anyway every time it was time for my medication and she would also want to know how many I had in and she was terrified incase I was to run out of them, plus she would tell me when I had to order them although I already knew, that didn't cut any ice with her, in her head I was still 5 when I was in my mid to late 30's. I'm in my 40's now.

My Mum passed away almost two years ago in another 6 weeks time or thereabouts. Sorry to depress you or sound a bit morbid.

I am aware of the VNS nerve but I don't know all the intricacies of it though. It's a wonder that they didn't try the VNS first because the DBS is usually only used as a' last resort' after trying everything else first. I certainly hope and pray that a new suitable medication comes out for him and I wish him the very best of luck with these medications he is taking now and that he has plenty in and doesn't ever miss a dose.

[abbygage in reply to Paula-38]

Thank you very much for replying to my post. The Dr.'s were going to try the DBS but because of to much scar tissue they were unable to do that so the last resort was the VNS . He has tried so many different medications. The Vimpat is the one that has helped the most and I think they are coming out with a IV for it. I'm looking into that. Merry Christmas

[Paula-38 in reply to abbygage]

You are very welcome anytime. 🙂Glad they didn't try the DBS then but I am pleased that he had tried so many medications first and that the Vimpat has helped him a lot! It's also great to hear that they are coming out with an IV for it! Merry Christmas to you and all your family.

[Paula-38 in reply to abbygage]

I think that your Daughter-in-law should make sure that your son has plenty of medications in and make sure that he takes them and never misses another dose, but there again they have the kids to look after too.