Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

CBD/Surgery

Hello everyone my name is mike, and I have complex partial seizures caused by right temporal lobe epilepsy. I have viewed this forum a few times, but this is my first time making a thread.

My neurologist recently suggested that I should go for surgery and have my right hippocampus removed, because I have tried several medications and they do not completely control my seizures. They say that the surgery is very successful and has a high success rate. Also that it has come a long way in the past few years, but it still is terrifys me...

I was wondering a couple things..

If anyone that has the same epilepsy as me has tried using CBD and what their experience was with it. Does it completely control your seizures? Do you still have to take your other medications? Have u got immune to it?

I was also wondering about people that have had the surgery and how you are doing now. Are u seizure free,? Do you still have to take medications? How is ur scaring?

Or if anyone has any links to other related discussions or helpful articles it would be greatly appreciated!

Comments

Hey MikeHas your doctor

Hey MikeHas your doctor talked to you about laser ablation?  I know it doesn't fit for everyone, and insurance companies can be difficult, but it can be worth looking into

Hi Joseph,No they haven't

Hi Joseph,No they haven't mentioned laser ablation to me, I am pretty sure they are just talking about the standard surgery. I will have to look it up, im not quite sure what it is.

Mike,Can't help you with the

Mike,Can't help you with the CBD but I have had the surgery and have documented my thoughts and experiences here:https://drive.google.com/file/d/0B4W1q98dcPYKT0hfSTI2N3ZuYjA/viewKevin

I had  right temporal lobe

I had  right temporal lobe surgery in 2006.I have only had a few auras since the surgery.Most of the auras occured in the first 2 to 3 years after the surgery.They then got further apart and got weaker until they finally stopped. I am still on meds. I stopped tegretol in 2013 because it is causing low bone density. I had a few auras so I started tegretol again.I had a few very weak auras soon after starting tegretol again,but they eventually stopped. I am taking 2000mg og keppra and 400mg of tegretol twice daily.

Thanks Kevin, I will check

Thanks Kevin, I will check out the link when I have some spare time.

Thanks Kevin, I will check

Thanks Kevin, I will check out the link when I have some spare time.

Thanks for sharing your

Thanks for sharing your experience Beetle. This is one of the things I am really worried about, is having the surgery and then still having seizures and having to take meds afterwords or maybe something worse..Glad to hear yours eventually went away again.

Hi Mike. The surgery in 2006

Hi Mike. The surgery in 2006 was the second.Sorry I didn't mention in first post. My first was in 2000. I was seizure free for almost 2 years. I was still better than I was before the op. The seizures started to return a little more often, but still not as often as before. I tried more new meds and participated in 2 medication studies which did not help. That was when my neurologist recommended the second op. The first op still did help even though it didn't stop the seizures.When I decided that I was going to go through with the first surgery, my neuro stressed that there is the chance that surgery may not help.  But I would have more of a chance of improvement . I always kept a positive frame of mind by thinking that having the surgery I was giving myself a chance at a better quality of life.

Mike,Have a look at:http:/

Mike, just FYI. My doctor

Mike, just FYI. My doctor didn't recommend doing the laser ablation because laser ablation doesn't have as high of a success rate (50/50 versus about 75% for invasive surgery). His view was that the tradition surgery has a higher success rate. My view on that was that you could do the laser ablation (with fewer side effects, especially no impact on memory function) and if it doesn't work then you could do the lobectomy surgery. My doctor was kind of 'old school' and so he never brought it up. You might need to speak with another doctor.

Hi Mike, I had seizures for

Hi Mike, I had seizures for 18 years but it took 9 years for the docs to diagnose them. I was in a car accident that caused me to have my first grand mal then left me in a coma for a week. I've been on many meds, tried the ketogenic diet - both worked some - but not enough to eliminate any of my seizures (I have 3 different types - simple partials, partials, and grand mals). So I finally signed up for surgery. They removed my left hippocampus (in my left temporal) b/c that's where all of the activity took place. Anyways, this happened 5 weeks ago so I'm in recovery mode right now. My fingers are crossed that this works. If not I'll look to other potential methods. My scaring is pretty badass - but my hair will grow over it - and my surgeon was ready to go in and improve upon one of the scars, but since my hair grows back - I'm letting it be for now. If you want to talk more directly, let me know and we can connect. Best of luck on life. Shellawww.swimmingseahorse.com

My daughter had this surgery

My daughter had this surgery at the age 2.. it went well but they were able to motor map her and leave her motor cortex behind so she did not loose her left side mobility. We still are still having some issues with sezuire control a couple years later but now are looking into having a rnf devise put in... i wont remove the rest just because she basically has only one sided sezuires so its not affecting her progression issues anymore.

My daughter had this surgery

My daughter had this surgery at the age 2.. it went well but they were able to motor map her and leave her motor cortex behind so she did not loose her left side mobility. We still are still having some issues with sezuire control a couple years later but now are looking into having a rnf devise put in... i wont remove the rest just because she basically has only one sided sezuires so its not affecting her progression issues anymore.

Also wanted to add we have

Also wanted to add we have strsrted cbd for her and it does help but its showing to have a honeymoon phase and they are coming back.

My husband is 4 weeks out

My husband is 4 weeks out from right temporal lobectomy. Last night, he had 2 seizures...they seem to happen ~>90% time in his sleep. It’s hard because I am sometimes unsure if it’s truly a seizure. He had laser ablation to both right hippocampus & amygdala sections last year (feb ‘16). Can surgery be successful in the long run even if you have small seizures so early after surgery? Also, after his temporal resection, he was readmitted for chemical meningitis which set him back. I’m losing hope and I don’t know what to believe anymore Kelly

What was the outcome from

What was the outcome from laser ablation surgery? My neurologist says I may be a good candidate for it.

Hi Mike, My situation is

Hi Mike, My situation is similar to what you are going through. I have had complex partial seizures for 20+ years. They were isolated to my right temporal lobe. I have not tried CBD but I have been on and off many medications without much luck, I was still having a seizure or two a month. In 2013 I had the laser ablation surgery, I was seizure free for 18 months then my seizures started again so in June of 2016 I had a temporal lobectomy and have been seizure free since. The scar was large at first however my hair grew over and the scar is not visible. Even though I keep my hair short unless I tell someone they do not even notice it. If your doctor believes the surgery will help I recommend giving it a try! I am down to 1 medication from as many as 4 and hope to stop taking all medications soon. I wish you the best and hope surgery is the answer you have been looking for!

 If you go to a good hospital

 If you go to a good hospital, the risks are very low for the scary stuff: infection, stroke, coma, etc. less than 1-2%. You have to think about the risks you experience every day with complex partial seizures. All you need is to have a complex partial seizure while crossing the road and you could get hit by a car. Don't look at pictures of the scar after surgery--it looks horrible after surgery, very Frankenstein, but it looks NOTHING like thata month later. The scar keeps improving in appearance up to a year after. Unless you like shaving your head very short, you won't see it with hair.  Check with your doctor, but uncontrolled right temporal lobe epilepsy is probably a lot more risky than the surgery. Uncontrolled right temporal lobe epilepsy can get worse and progress over time. There are people who suffer uncontrolled RTLE until age 40, get the surgery and are seizure free and then wonder why they did not get the surgery at 20. I would at least do the surgical work up and see what your neuropsych test says, what the functional MRI says, what EEGs say, etc.--you don't have to proceed with surgery just because you have done the work up. I would get 3 separate opinions.

I had Partial complex (also

I had Partial complex (also diagnosed with petit mal) seizures since 6 yrs old. Went through numerous neurologists who all kept saying only medication can help. It didn't. In 1995 I found a fantastic neurologist, who immediately concluded I was a surgical candidate. He sent me to a neurosurgeon who ran a battery of tests. In Feb 1996, at 31 yrs old, I had a right temporal lobectomy and have not had a seizure since. I sometimes had a half dozen a day. I still get an occasional aura, for which I still take meds, but I got my life back. The scar is mostly hidden by hair and what does show is barely noticeable unless I point it out. Best of luck to you.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P