I have Grey Matter Heterotopia. My doctor is suggesting surgery...thoughts?

[lagamer86]

I've been living with epilepsy for about 13 years. I have Grey Matter Heteropia which causes simple partial and complex partial seizures. The complex partial seizures usually led to tonic-clonic seizures. Fortunately, my medications has controlled my tonic-clonic attacks, since I haven't had one in about 10 years. I still get 2 or 3 simple partials and complex partials a week. Although the attacks are quite taxing i've been able to keep a job and drive.

I'm on my 6th medical concoction to try and control my simple and complex partials, without success. I'm currently on 600 MGs of Trileptal and 200 MGs of Vimpat,changing to pregabalin in two weeks. I had a chance to speak with the hospital director and he mentioned that my form of epilepsy is perfect for surgeory since the heteropia has been located via an MRI. He also mentioned that the success rate to completely remove or at least lessen my attacks, falls around 80 to 90 percent.

I am starting the telemetry process tomorrow, but I'm a bit nervous about the idea of surgeory at this point. Although my attacks are still frequent enough to warrent concern I believe there's hope since i've only looked at 6 or 7 different meds over the last 10 years. Since I haven't had a tonic-clonic seizure and the 'fear' aura in over 10 years, I feel like the meds have helped me immensely, although the quality of life still isn't that great due to my other seizure attacks.

Has anybody on this forum dealt with grey matter-based surgeory based on my severity? Any comments and thoughts with the process? Do you ultimately feel like it was worth it?

Thanks for taking the time to listen.

Regards,

Jared

 

[RobinN]

My daughter also has a heterotopia. I was told by two neurologists that was why she was having seizures. I was told by a third epileptologist team that this was just a common birthmark on the brain, and that it was not epilepsy. So I was like hmmmmm.......

I decided, my daughter did not begin having seizures until the age of 14. She had many seizure free years. I wanted to find a way to get her body back to a point where her seizure threshold was higher.

We have done neurofeedback, we have changed nutrition, with positive results.

My daughter is not on medication, and her seizures are showing improvement. She was having 6 per month when on medication. Now she has not had a seizure in 5 months.

From my research, doing any kind of surgery on the brain can create lesions, scaring, which can also cause seizures. However, training the brain via neurofeedback, you can normalize or enhance brain activity. Train the brain to work around the birthmark. It is certainly a therapy I would consider before surgery. As I would also consider nutritional changes that are proving to be helpful for many with seizure activity.

Certainly we all are individuals, and what has worked for my daughter, won't necessarily work for you or others, but it is something that should be considered. It was never offered to me by conventional medical doctors. I had to find this information out by myself. I wanted to share it with you.