Anyone had LITT (laser interstitial thermal) Procedure?

Hi James,
No, I did not have the laser surgery. Before doing it, I wisely asked for a second medical opinion and this doctor said that brain surgery to remove the lesion on my left hippocampus would have more losses than benefits. I have been treating myself with CBD, a gluten-free diet, yoga and behavior approach which have helped to reduce my seizure by more than 66%, if I compare this year to the same period of last year. Not seizure-free yet, but feeling much better than with my AED treatment and back to a normal life :-)!
Have you tried CBD ( a component of Medical Cannabis) and a gluten-free diet on your son? Before doing any brain surgery, if I would not be in a dangerous condition, I would exploit other alternatives available such as diet, Chinese medicine, and medical cannabis. If those alternatives do not work, we can always stop with them. But if brain surgery does not work, there is no way back in my understanding.
If you enjoy reading, I suggest the book Brave New Medicine by Dr. Cynthia Li which has brought me new perspectives.
My best wishes and vibrations to your son!!
Santosha

Hi James again
I have just remembered one thing that might be relevant to your son's treatment. Some time ago, I have had an appointment with a doctor specialized in neuroscience and neuromodulation, who is a colleague and partner of my epileptologist. He has mentioned neuromodulation technologies from companies such as Neuroeletrics, Soterix Medical, Flow Neuroscience and Neurocare Group (Neuroconn technology). All those companies are specialized in neuromodulation and offer technologies such as helmets for treating epilepsy. This doctor said to me that using a neuromodulation helmet once a day for 30 min-1 hour could help me in the control of my seizures. Wouldn't that be an option to investigate before doing a brain surgery to implant DBS?
I have not yet tried this alternative, as I am currently working on a behavior approach. If I try many things at the same time, it will be harder to know what is working well for me. This is alternative I will certainly explore if needed.
Santosha

Our clinical Neurologist has not mentioned any about a simulation helmet, sounds like an alternative to the surgery. I'll ask him on our next trip. Thanks for the info and hope you're doing well. Yes we have had plenty of experience with the THC and CBD, some good and some bad. We've been using a combination that my sons uses with a vaping pen. A non technical observation it appears there is a sweet spot for smoking. Too much in a single evening/day generally results in "more" seizures" but a small portion has positive effects. It's just difficult to find the magic volume when you vape. We're now experimenting with the chewable m which is more quantifiable in consumption. I'll keep you posted on our findings.
James

My pleasure @jamessr! Try to have a look at the website of those companies I have mentioned. This neuromodulation doctor I spoke to, mentioned much about Neurocaregroup (it is a German group).
Is your clinical neurologist an epileptologist? Even my doctor, who is an epileptologist, had not much information on those helmets, recommending me an appointment with this partner doctor who specialized in neuroscience and neuromodulation.
Regarding CBD and THC, have you tried the oil? I take CBD oil that I dose in a syringe. I understand this is much easier for dosage, isn't it?
Have a nice day!
Santosha

My daughter had EMU and testing is being considered for laser surgery of her left temporal lobe to remove scarring
She is 16 I would like to hear experience of others she has tried several meds and has complex partial seizures

Dear @cmac55

I was also been considered for this laser surgery in 2021 after having tried 5 AEDs (Lamictal, Vimpat, Tegretol, Oxcarbazepine and Gabapentin) without much success (because of the strong side-effects I had or the worsening of my seizures). I also have temporal lobe epilepsy with small sclerosis on the left side of my temporal lobe. But thankfully, I have searched for a second opinion and talked with another neurosurgeon, who was against this surgery in my situation. Because my sclerosis is on the left side of the temporal lobe, he said that the harms of LITT surgery would be greater than the benefits. I would have considerable cognitive losses and this would be a great suffering to me. Moreover, he told me that 25% of patients with temporal lobe epilepsy have psychiatric disorders after such surgery. Last, but not least, I would have to continue with medication for some time after the surgery. But all people with epilepsy I know who went through surgery are still dependent on AEDs. Before considering LITT surgery, this second neurosurgeon has recommended trying alternative treatments as the harms of this surgery are irreversible.
I thankfully decided to continue trying to better control my seizure with alternative treatments, switching to medical cannabis (CBD), combined with a gluten-free diet and other alternative treatments. The gluten-free diet had a great impact on my seizures, reducing them much. There are more and more studies showing a relationship between the gut and the brain. Gluten, even if you are not coeliac (I am not) causes gut inflammation. Taking gluten out of my diet was much easier than I had imagined.
Today, I am happily back to life. I still have about 2 seizures a month, but they are very soft ones.
Does your daughter have generalized seizures or are they only partial complex ones? You said she has tried several meds. Can you tell us more about that? Has she tried CBD/medical cannabis, diets and other alternative treatments (i.e. neuromodulation)?
I am more than happy to share more about this experience with you. Feel free to send me a private message.
I wish all the best to your daughter and you.
Santosha

@cmac55
I've had Epilepsy for 55 years.
My seizures were frequent and severe. I ended up in numerous induced comes for months. I refused all brain surgeries and VNS. Perhaps if I had TLE I may have given it more consideration. I read temporal lobe surgery has the highest success rate but my friend in England died after it.
For me the risks are to high to consider it.
I understand LITT is typically slightly less successful than open surgery. Success rate is 50-to near 70%.
I've read adverse effects happen in as many as 83% of LITT patients.
Have your doctors discussed all the potential problems as well as the potential benefits?
How often does your daughter have seizures?
Take care,
Jake