Hi Marie, Good Morning (@aproudrebel)
Thank you so much for sharing this with the group. It gives us new hopes and ways to handle epilepsy, for sure. God bless you!
I am very happy for you !!!!!
I have also met someone by coincidence that helped me so much in my treatment with epilepsy. And I met her here in our group!
This was in 2021 when I started to prepare myself for surgery to remove my lesion on the temporal lobe on the left side (hippocampus). I got the contact of a mother whose son went through the same experience, sharing with me the contact of their neurosurgeon. I contacted this neurosurgeon to have a second opinion and he was totally against this surgery, saying I would have more losses than benefits as my lesion is in the hippocampus on the left side (I would lose much memory and other cognitive skills). He advised me to try more medications, recommending me my current epileptologist. I have so canceled the surgery and started treatment based on CBD, a gluten-free diet and hatha yoga, improving and feeling better every year. I am very happy to have found this epileptologist who really does the best for his patients. I am also very thankful to this mother who shared the contact of this neurosurgeon with me and changed my life. God bless her!!!!
It is today clear to me that surgery was recommended as it was a better source of profit for the doctor and hospital. Sad to see that this is happening in our current world. But thankfully we still have good and ethical doctors around that respect and follow the oath "first do no harm". BTW, there is a movie called First Do No Harm with Meryl Streep on YouTube. It tells the story of Charlie from the Charlie Foundation who could cure his epilepsy after the keto diet.
Here is the link to the movie: https://www.youtube.com/watch?v=xY9ZMGK5Hbs&t=17s
If medications do not work for you, there are many alternatives before surgery that are not always explored such as diets, hormonal control, and helmets. Last year I have been to a neuroscientist recommended by my epileptologist, who told me about helmets that if used daily for 30 minutes could help control seizures. Still a possibility I am considering if it is necessary after my SIBO (small intestinal bacterial overgrowth) treatment.
To all of you, do not lose hope and if you do not feel comfortable with the treatment your current doctor is recommending, check for a second opinion or even a third opinion. I have been to 12 doctors, before finding my current epileptologist.
Santosha