I am needing info about epilepsy surgery

[stacey]

Hi guys I was on here quite a while ago and I desperately need some info about epilepsy surgery.

A bit of background, My 7 year old son Xavier has Tuberous sclerosis complex with Adhd, Autism, Intellectual disability( 1.5-2 year capacity) and seizures.

He has been on 11 different anti epileptic medicines and the latest Sabril has been great for his drop seizures but he has had some serious behavioural issues such as aggression and hyper sensitivity.

I have been speaking on and off with the neuro about the next possibilities and he mentioned trial medicines and also surgery as options.The trial meds have been discounted for him due to his lack of verbal interaction and communication as well as having medicine changes and seizure activity.

He is on the wait list for the head neuro doc to be able to discuss his surgery stuff but i really wanted to hear from others that have had the surgery (if from australia even better).anything help is good

thankyou for reading!

xx

 

[Cint]

Hi Stacey,

Your son does have quite a few issues to deal with, including seizures, for a 7 year-old. But then, so do you have a lot to deal with. I'm much older and when I had surgery it was 20 years ago, so things were much different back then. But I'd still say keep surgery as a last resort. It may or may not be helpful and there is NO going back after surgery.

Has the neuro mentioned the VNS (Vagus Nerve Stimulator) for your son? Or the RNS (Respnsive NeuroStimulator)?

Here is a good website with info about all this:

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-surgeries

http://www.epilepsy.com/learn/treat.../learn/treating-seizures-and-epilepsy/devices

 

[stacey]

VNS vs Surgery

Thankyou Cint for replying so promptly to my question.

I have spoken to the neurologist about all of the different types of medicines and other alternative therapies available out there and unfortunately between the behaviour and or seizure activity, it has not been enough to be able to get a solution.

The VNS was spoken about and in his neuro's opinion it "nearly never works".The doc said that the VNS is the last resort because he doesnt think it will work for him, now I am not sure if he means just in Xavier's particular case or the whole machine.

The neuro believes that surgery should be the next option and I am starting to think that I have to agree with him.I realise that it is serious surgery and that the outcome isnt assured but medicine just seriously hasnt been working and I have had many sleepless nights worried about him in general , anxiety attacks and also as most of you know well, frustration with some of the "health" professionals.

Thanks again!

 

[valeriedl]

I was unable to have any type of brain surgery so my neuro suggested the VNS for me and I decided to get one.

I am still having seizures since I've gotten it but not nearly as many and they aren't as bad as they were before. If I can feel the seizure coming on I can usually stop it from going into a complex partial. If someone sees me having a seizure they will use the magnet on me and I will come out of the seizure much quicker.

I am also taking meds along with the VNS because the VNS wasn't enough to help me just on it's own. You could sort of say that the VNS may work good with some people and not with others. It's just something that you have to get to see how it would work with you.

If you do decided to get a VNS and find out it's not working the only problem is that you can't get it removed, just turned off. Since you will still have metal in your body you will be unable to have an MRI.

 

[Nakamova]

stacey, have you read CQ's threads? She recounts her experience with surgery (and is an Aussie.)

http://www.coping-with-epilepsy.com/forums/f41/almost-time-11741/
http://www.coping-with-epilepsy.com/forums/f41/brain-still-behaving-itself-most-time-23038/