Just finished 5-day Video EEG/Testing

[KnightsGirl]

I was in the hospital this past week for a 5-day Video EEG & other testing.
The first day I had the MRI & PET scan and they hooked me up to the EEG. The second day I had the neuropsychological testing. I was sleep deprived that night since they were hoping that would trigger a seizure. The third day they were hoping for a seizure, but I didn't have one and just had the Interictal SPECT test. I was really starting to think that I wasn't going to have any while I was in the hospital, which would really suck because I was hooked up for the doctors to see what happens and then I wasn't having any! I told them if I was at work it would be no problem. I had been having about 2 to 3 per week on Keppra & Topamax, but they were all happening at work because of the stress!

They sleep deprived me again the third night. That morning I had a short Complex Partial with no aura which showed up on the EEG. They hooked me up for the Ictal SPECT test. Thankfully I ended up having another Complex Partial. I had an aura and was able to press the button and told the nuclear tech who was sitting with me. They were able to inject the radioisotope and I had the scan shortly after that. I didn't have anymore seizures in the hospital, just those two.

I have to set up an appointment to go over the results, but from what I gathered briefly speaking with the doctors, they confirmed I have Right Temporal Lobe Epilepsy and they think I am a candidate for surgery. I mentioned I would be interested in the Laser Ablation, since it's less invasive and has a faster recovery.

Has anyone here had the Laser Ablation surgery? I will have to see what they tell me at my next appointment, but I am tempted to get a second opinion if they don't want to consider the laser surgery. I live in Florida and there are several hospitals not far, maybe 1 1/2 hours away, that do the laser surgery.

The regular surgery scares me. I think I would feel more comfortable with the laser surgery. It sounded to me that they don't have a lot of experience with the laser surgery and that's why they don't really want to do it.

The doctors who did the testing this week are very good.
They are with a specialized epilepsy center, Epilepsy Center for Kids, but they see adults too, I'm 45.

I think I would be more comfortable with the less invasive approach first, then do the regular surgery if I need to.

Any thoughts/opinions on this?

thanks,
KnightsGirl

 

[BIGMAN131307]

Hello,

I'm 35yrs in NY.

Although I didn't have Laser Ablation surgery, I was once considering Gamma Knife Surgery.
I do believe it is a similar procedure, if not the same.

Like you I suffer from CPS and the thought of brain surgery scared the crap out of me. But between my family, the CWE members I talk with here, my neurologist, and neurosurgeon I faced my fear. You can read about my path to finally have Right Temporal Lobe Epilepsy (RTLS) here: http://www.coping-with-epilepsy.com/forums/f41/looking-ahead-surgery-but-fear-setting-18981/

I talked with my neurologist about Gamma Knife Surgery. He explained to me about the effectiveness of RTLS. It's a surgery that has been done for over fifty years. The Gamma Knife Surgery has it's place, but RTLS was a better option in my situation. All the tests I had confirmed I was a great candidate for surgery. Even though I still was concerned, I was able to lesson my fears after talking with my neurosurgeon. When I and my family met with him he was open and answered any and all questions we had.
I'm four months post RTLS. So far the surgery has worked.

It sounded to me that they don't have a lot of experience with the laser surgery and that's why they don't really want to do it.

The hospital I had my RTLS at does offer Gamma Knife Surgery. But they use it for Cancer
Surgery. Your hospital may be in a similar situation. They also prefer the tried and true method for seizures.

 

[Cint]

There are plenty of other meds to try if you're only having 2-3 CPs per week. I had a lobectomy only because I was having 3-4 CPs a DAY! And after the surgery, I was only seizure free for 14 months. There is also the VNS to consider if Laser surgery isn't an option. But, beware, none of these are a cure-all for seizures.

 

[KnightsGirl]

I still need to meet with the doctors to discuss the results of the Video EEG.
I'll post again when I get that information.

Here's a link to a video I found from the Mayo Clinic in Jacksonville, FL which is what started me thinking about the laser surgery instead of the regular procedure.

I guess I can't post links yet, but if you search Laser Ablation for Epilepsy and Dr. Shih, you will find a video on YouTube discussing the procedure.

Thanks for the replies,
KnightsGirl

 

[Afriend]

This way of operating on the brain sounds better to me. Cutting the head open scares the heck out of me. But these posts are old, did anyone get the laser surgery done?

 

[KnightsGirl]

so I had a regular temporal lobe resection in March 2015. Everything was good and I had been off meds & driving since May 2016, but last week I wasn't feeling good and went to the ER so I could start Keppra again. Not what I wanted, but it's better than having a seizure.
The surgery was tough, but worth it. I had a few complications & had to have surgery in May 2015 to place a shunt to help with drainage. It's under my scalp, but on top of my skull. I was annoyed with having to have another surgery, I was feeling good & ready to go back to work, but I had a fluid pocket where the temporal resection was performed & we had to take care of it. It was almost like having a water balloon under my scalp and the shunt helped to drain it.
I had the surgery March 25 and was ready to go back to work at the beginning of May, but ended up going back at the end of May because of the shunt surgery.
I have already decided if I need another surgery I'm definitely going to Mayo Jacksonville for the laser ablation. Everything about it seems better, the recovery, etc.
Even though the regular type of surgery had a long recovery, I would do it again in a heartbeat. I'm a CPA and have a great job. The surgery was well worth it & gave me my life back. Now I just have to deal with not driving until Valentine's Day, but I'm very hopeful things will go well now that I'm taking Keppra again.
Good luck with whatever you decide!

 

[Afriend]

so I had a regular temporal lobe resection in March 2015.!

Did they see something on a scan that made them do surgery? If so what did they see and on which scan? With Donna they never see anything abnormal.

I'm glad it worked out well for you.

 

[KnightsGirl]

after I had all the tests done they did see a scar on my right temporal lobe. I used to get migraines and I think the migraines eventually progressed to epilepsy. I always had pain on my right side when I had a migraine and that's where the scar was located.

 

[Afriend]

after I had all the tests done they did see a scar on my right temporal lobe. I used to get migraines and I think the migraines eventually progressed to epilepsy. I always had pain on my right side when I had a migraine and that's where the scar was located.

I can see why you decided to allow them to do surgery on you. And as you said you've had good results. But with Donna they don't see anything on any of the various scans. They did find most seizures originate in the left temporal lobe but not always. Based on this they had wanted to open her head and start removing part of her brain. I thought this was a terrible idea and after some thought Donna agreed. That was about 4 yrs ago. Now she's with a different hospital and a whole group of new docs and this hospital uses Laser Ablation. I like that better than a lobectecmy but I still don't understand where they'll do the ablation since they don't see anything on a scan. I feel like they're using her as a test case. This ablation procedure is very new and while I believe it holds promise I don't think they should kill off part of the brain without a good reason. Well, we're still a long way from actual surgery. First they have to repeat the MRI and maybe PET scans then I think they have to do the 24 hr EEG monitoring. Donna doesn't use a PC so she asked me to see what I could find out about the Laser Ablation. Thank you for responding.

 

[KnightsGirl]

good luck with whatever you decide. I have an EEG scheduled for next Thursday and I see my doctor on Sept. 10. I've been feeling ok, but if I ever feel like I need to consider surgery again I'll schedule an appointment at Mayo to get detailed info on the laser ablation and I'll make sure to post that information here to help you & others. good luck!

 

[Afriend]

Hi KnightsGirl,

Are you saying that anyone can go to the Mayo clinic, I didn't know that? I thought a team of doctors had to refer a person there.
From the posts I've read here most people are getting seizures almost daily. But thankfully Donna only gets 3 - 6 a month with many auras. However, some of her seizures have quite severe and she's been seriously injured. But this is why I ask so many questions about surgery. IMO all surgeries have side effects. For example, my gallbladder was removed in 2004 and to this day I can't wear very tight pants anymore. The docs say this should have ended after 1 year but it didn't. Brain surgery and spinal surgery scare the daylights out of me.

 

[KnightsGirl]

I'm not really sure how to get into Mayo, but I know when I've been researching & have gone to their website they do have a link to request an appointment so I was thinking I could just fill that out & get an appointment set up.
I understand what you mean about things happening from surgery. My husband had a hernia surgery & has had issues ever since.