This New Laser Surgery, need info?

[Afriend]

Hello All,

My dear HS friend gets seizures about 50 yrs. Twenty yrs ago regular surgery was ruled out because 1 seizure originated on both sides of her brain. I wasn't too upset because I didn't want her entire head cut open and they had to go deep into the temporal lobes. She now has a new hospital with new doctors and they do the laser surgery which is less invasive. I don't know if she's a candidate yet or not. So I just want to know anything anyone knows about this technique, especially if you or a loved one had this done?

 

[Nakamova]

Hi Afriend, I think maybe you're referring to laser ablation surgery? I think a few CWE members have had it. Hopefully they will weigh in. I found a some references in the threads below:
http://www.coping-with-epilepsy.com/forums/f23/laser-ablation-24849/
http://www.coping-with-epilepsy.com/forums/f41/life-post-surgery-27136/
http://www.coping-with-epilepsy.com/forums/f23/just-finished-5-day-video-eeg-testing-24317/
http://www.coping-with-epilepsy.com...bout-laser-technology-epilepsy-surgery-20291/
http://www.coping-with-epilepsy.com/forums/f41/who-did-your-surgery-how-did-go-27390/
http://www.coping-with-epilepsy.com...-surgery-occipital-lobe-based-epilepsy-27258/
http://www.coping-with-epilepsy.com/forums/f36/seizure-after-surgery-26255/


(Folks can read a bit about it here: https://www.uchicagomedicine.org/ne...er-surgery-becoming-go-to-option-for-epilepsy)

 

[Afriend]

Thanks for the links. I'm hoping to hear from people who had it done.

About 6 yrs ago a different hospital was talking about opening Donna's head and looking for brain tissue that might be damaged which they would have then removed. The good folks here advised against it and Donna herself decided not to go ahead with it.

Back then I heard about the Laser Ablation but it was only done at a hospital Donna couldn't go to. She's now with a new hospital and they do the laser ablation. However, before they can do that they need to do various scans and EEG monitoring.

But Donna also said 1 of the new Docs is not opposed to medical Marijuana. Donna says when we were young and we smoked Pot she never had a seizure while stoned. So I want her to try CBD oil before any kind of surgery. I noticed 2 favorable threads about CBD oil. It's legal over here the issue is the price. But maybe since her new Docs don't oppose medical Marijuana I wonder if Medicaid would pay for CBD oil.

 

[Music36]

Hi Afriend,

I had the laser ablation surgery on my left temporal lobe in 2015. The surgery was successful. They drilled a hole in the back of my head and shot the laser through the hole and destroyed most of my left Hippocampus. They left the tail part. They also destroyed part of my left Amygdala. Research has shown less memory problems when having laser surgery. They have to cut through the white matter when doing a lobectomy and that leads to more severe decline in memory than when doing laser surgery. They had told me beforehand that the surgery would take about 5 hours. It end up taking 7 hours. But, I rather they take their time and do it right. You are in an MRI when they perform the surgery. Most of the time is spent getting the laser perfectly targeted. Destroying the part they want to destroy does not take long once the laser is in position. Recovery is different for different people. They say you usually go home the next day after the laser surgery. Personally, I had a hard recovery, but it was worth it. I don't regret having the surgery. Hope your friend is a candidate. I did a lot of research before I had the surgery. You can actually watch it being performed online if you want.

 

[Music36]

I should add that once it was determined that I was a candidate I met with the surgeon and he spent about 1 and 1/2 hours with me explaining the procedure and answering all my questions. He also showed me my MRI and PET Scan. I could see the damage the seizures had done over the years.

 

[Afriend]

Hi Music36,

If Donna went online she'd ask you these 2 questions. One is did the surgery eliminate or reduce your seizures? And 2 would be if you still need meds?

I'll ask how long ago it was done?
It sounds like they targeted the same areas of your brain that they would on Donna.
I am curious that you said the scans showed damage the seizures did? Another problem with Donna is the scans don't show any damaged tissue, no abnormal growths, so I question what they would remove. Five years ago they tried to blame the seizures on Glial cells but I think they then realized Glial cells are necessary. So I don't know what tissue they would destroy since they don't know exactly where Donna's seizures originate.
I have one more question, do you get headaches since the surgery? Most people with open head surgery always suffer from headaches afterwards and headaches are 1 problem Donna doesn't have.

Thank you for answering me.

 

[Afriend]

Hi Again Music,

I just read a bunch of your other posts. You are very brave I commend you.

I think you're younger than Donna but you aren't a kid so can I ask if you ever smoked Pot in your life? Donna was never a big Pot smoker but she did it many times. She says she never had a seizure after smoking it. Even if it was legal here Donna doesn't want it again. I can understand that. But what about the CBD Oil? I want Donna to try the oil since she says she never had seizures while stoned. But she's resisting this. Do you have any experience with Pot or CBD oil?

 

[Music36]

Hi Afriend,

I had the surgery June 2015 and it was successful. Before the surgery, I had complex partial seizures all the time. The longest I would go w/o a seizure was two weeks. Since the surgery, I have only had three complex partials. One was immediately after the surgery which is normal, the second one was nine months later, and the third was a few months ago b/c of a new medication I was trying for fibromyalgia pain. Of course, I stopped that drug immediately.

Some people can go off meds 2-3 years after surgery. I still take my meds. I will probably never go off my meds. I still have occasional auras. I had many auras the first year after surgery, but they greatly reduced. It takes two years for the brain to heal after surgery.

My MRI showed scarred tissue but I know that isn’t the case for everyone. Sometimes, more extensive tests need to be done. My PET Scan showed severe atrophy.

I only had headaches the first month after surgery. I was in a lot of pain for a few weeks, but it was definitely worth it. I believe the possibility of having headaches long-term or permanently is more likely with the lobectomy as opposed to laser surgery.

 

[Music36]

I am 50 years old. I smoked pot when I was a teenager and into early twenties. THC in pot is what gets people high. THC can trigger seizures for some people with epilepsy. CBD oil can prevent seizures for some people. You don't get high off CBD oil. Street pot has both ingredients. I have no experience with CBD oil, but there are people on this website who do use CBD oil and discuss it.

 

[Afriend]

Thanks Music,

In the past they have never been able to see anything on Donna's scans that looked abnormal. Additionally, in 1992 they recorded some seizures with the EEG machine and 1 originated on both sides of the temporal lobes and a 3rd originated in one of the Occipidal lobes. Finally Donna only has 3 - 6 seizures a month unless she gets deprived of sleep or her stress levels go sky high. Even so, in 1992 one doc wanted to do a lobectomy. I can speak like a doctor when I need to so I convinced him Donna wasn't a good candidate for surgery. Your case is quite different. If they ever see lesions, atrophy, or abnormal growths on Donna's scans I'll be recommending surgery but they don't. So every time they start talking about surgery I get nervous.

I first heard of CBD oil with the little girl named Charlotte. There's a Marijuana farm in Colorado where they grew the Hemp plant and turned it into the oil. CBD saved Charlotte's life and was named after her. I found a website that claims to sell it but it's $300 a bottle. Donna would probably need 1 bottle per month. She simply can't afford that. If I was a rich man I'd buy it and leave it with her and hope she tried it. I don't blame her for not wanting to smoke Pot everyday but the people who take CBD say it has little to no psychoactive effects. I think if the medical profession would stop opposing Marijuana and give CBD a real chance it would be the best thing for many people, not just ones with seizures. Eventually this will happen. Recently it was decided that people in NYC will no longer be prosecuted for smoking Pot anymore. I don't advocate Pot smoking for fun but for health reasons is another story.

 

[BillK]

Upcoming laser ablation on left hippocampus

I'm getting laser ablation performed on my left hippocampus in January. They hooked me up in the hospital and every seizure they could see was coming from that area. Since I have had previous brain surgeries to remove cavernous malformations, they thought this smaller procedure would be best. And I'm glad. I don't think I would want to do a complete left temporal lobe surgery. And this apparently has much less risk than going in with a knife.

According to them, my left hippocampus is already pretty damaged and my short-term memory depletion has already or largely taken place. In fact, the surgeon thought my memory might actually improve. I'm still a little scared about the surgery though as this is actually dissolving a portion of my brain, rather than removing something that shouldn't be there!

Anyway, I'll follow up here with a report on the outcome at various times since I hear that the initial experiences can be worse than the latter.

 

[Nakamova]

BillK, that sounds very promising! Definitely keep us posted, and best of luck to you.

 

[Music36]

Hi BillK,

I had the same situation in that my left hippocampus was already damaged before surgery and I was having memory problems before surgery. My doctor told me b/c of the damage my left hippocampus wasn't doing its job anymore. Other parts of the brain had already taken over. Tests had shown severe atrophy and little activity in my left temporal lobe. Considering the damage before surgery, there is a lower decline in memory issues post-surgery. Also, there are improvements as the brain heals after surgery. My memory got worse after surgery, but improved over time. It has been three years since I had the surgery. The first year of recovery is the hardest but it is worth it. I do not regret having the surgery. Now that my brain is healed, I would say that my memory issues are a little worse than before surgery but it's not as bad as the first year after surgery.

 

[Afriend]

Hey BillK,

It seems like common sense to me that ablation should be safer than cutting the head open. It's just a new procedure but I won't be surprised if eventually it all but replaces conventional surgery. They've been using ablation for the heart a long time. I wish you the best and do keep us posted.

 

[BillK]

Post laser ablation of left hippocampus

I had the laser ablation of my left hippocampus about a week or so ago. They said they got it all and no more. I found out before the surgery that my amygdala was already gone, which was a big surprise since previous neurologists hadn't told me that.

Anyway, the actual scar is just a tiny little hole. But half my head is shaven and it looks like vise clamps were used to hold my head in place! That will come back. I'm not sure to what extent my memory will, although it's too early to tell. I'm just having a lot of trouble remembering names. I had to open a text like 40 times to remember a woman's name and finally got it with the assistance of a memory tool - thinking of a song that used her name. They thought my amygdala wasn't doing much anyway as the result of previous surgeries, but they could have been wrong.

Otherwise I'm feeling basically OK. I'll keep updating here with future results.

 

[BillK]

Hi Music36 - Could you tell me what your hard recovery was like? It is good news that things got better for you over time.

 

[Music36]

BillK,

My head was in a lot of pain after the surgery. The pain continued to increase. Morphine did not help. I was afraid I may have had a hemorrhage, but thankfully I did not. I had the surgery on a Friday and by Sunday I was in so much pain I wanted them to induce a coma. My father raised hell and made the nurse call my surgeon Sunday. My surgeon said to put me on steroids, which greatly helped. Swelling came down and the morphine was able to do its job. I was pissed off. They should have started me on the steroid sooner. Another issue was I got very sick from the anesthesia and was vomiting a lot. I was in the hospital for five days. My boyfriend was very supportive. He spent every night in the hospital with me and took care of me.

My memory and communication issues were pretty bad for awhile after the surgery. It was so exhausting for me to have a conversation. I also was on an emotional roller coaster and felt like my personality had changed. My emotions were so intense and I was crying all the time for no reason. I was experiencing severe anxiety and bipolar symptoms. I couldn’t even handle feeling joy because the emotions were so intense and powerful. This lasted about nine months, but the first few months were very severe. After about a year, I started to feel like my old self, but not exactly. I came to realize I was probably always bipolar, but wasn’t that severe until after the surgery. Same goes for the anxiety disorder. I probably lived in denial for years. After the surgery: it was so severe there was no denying it. Thankfully, I’m pretty much back to my old self these days for the most part, but there are some changes. Some changes are good. I don’t have the anger issues I had before surgery. I have had to accept a new normal with emotions and memory issues. Sorry this is so long. I hope I answered your question. I finally started to see a psychiatrist and a therapist a year ago and was diagnosed with bipolar II and anxiety disorder. In the past, I had always tried to be my own therapist.

 

[BillK]

Hi Music36 - Thank you for getting back so quickly and in detail! It sounds very tough for you in the first year and still no picnic. But I'm glad you are somewhat back to normal, and have had some insights to balance the emotions.

 

[BillK]

Well, it's several months after my surgery. I'm feeling better, but my memory was recently tested and it got worse in some areas. But I was very tired when I went in for the test. Unfortunately, I've still had some seizures since the surgery - but so far, they're not as bad and I think less often. My neurologist said that means the seizures were coming from the hippocampus (which made me wonder why they choose to take that out!) But I had previous damage there and I guess they thought that was where they were coming from. My neurologist said they should be not as serious since most seizures proceed through the hippocampus. I might get another opinion from a different neurosurgeon.