Hello @sarahlou
I can certainly understand you being terrified. I believe your totally correct. Your son is not being honest with himself. The risks are not worth the potential outcome. IF, things don’t turn out as he hopes and the results turn out to have some or all or even worse bad effects perhaps even worse side effects than either of you had been told about, what then? Who has to live with those effects, obviously he will, but what about you, his family, his friends. Who might have to care for him? 20% positive outcome is absolutely ridiculous to even consider for such a high risk surgery. I agree that the doctors may well be pushing your son into having an unrealistic surgery. NO ONE would have such a DANGEROUS and radical surgery as this especially with such poor odds.
Your son is desperate and not thinking clearly, at least in my opinion.
I have had Epilepsy for over 50 yeas and had active Tonic Clonic, Focal Impaired Awareness
(old terminology is “Complex Partial” or even older term “Psychomotor”) and Generalized Absence seizures and numerous Convulsive Status Epilepticus Seizures. I have had over 13,000 Seizures in my 46 years of active Epilepsy. My seizures have FINALLY ceased, why is anyone’s guess but by the grace of God they are gone, at least for now. You know Sarahlou, your sons seizures may also just one day abruptly stop too. No one can predict it or how seizures will be in the future although they continue to try. My advice is to pay them no mind. ABSOLUTELY NO ONE CAN PREDICT WHEN, WHERE, WHY, OR FOR HOW LONG SEIZURES WILL CONTINUE. Doctors at Stanford University told me and my parents I had Intractable Epilepsy, they were proven wrong. Many doctors were wrong that I went to. Doctors are frequently wrong of course don’t think any will ever admit it. My cousin was never told his Diaphragm could be paralyzed during his three heart operations but it was. Now his abdominal organs are in his chest and is on 24/7 oxygen, Unexpected complications are always a possibility.
Your son like I said is desperate and grasping at straws. The odds are to unrealistic to go through such a radical and dangerous procedure. There are other non invasive things to try or at least less invasive things that could be tried first. His doctor has a responsibility to inform him of all other possible treatments. Obviously Anticonvulsant drugs are the primary Epilepsy treatments which are 70% effective but sometimes take years to get the correct dosage and cocktail. VNS (Vagus Nerve Stimulation) is another possible treatment but was not something I chose due to its poor odds (20-55% seizure control) and side effects and the coil around the nerve at that time could not be removed but who knows, it may work for him. Diets, (Ketogenic diet) vitamin therapy has helped some (have his bit D checked) there has also been research on Melatonin for seizure control although I’m not familiar with those studies. Also Marijuana without THC has really helped many especially children. There are NeuoChiropractors too, I personally know one who treated a boy who was having 100 seizures a day, he hasn’t any since his treatment. There are also other implants that can stop seizures before they start and are much less radical. Biofeedback is another alternative treatment I have seen it work, and also not have any affect. Surgery should always only be considered as a very last resort, especially brain surgery. I have known to many people who have had bad surgical outcomes. It is always a risk and that should never be forgotten. I have studied Epilepsy for over a half century and am by far no expert but have seen a lot and have been in contact with people from all over the world. I’ve seen things I wish I hadn’t and heard and read things I h wish I hadn’t as well. One thing though, It’s never as simple and easy as a lot of doctors want you to believe.
Best wishes and may God be with you and bless you both/all.