VEEG and being considered for surgery

[Loopy Lou]

Hi again!

A while ago i posted that i was being sent for a second opinion on my epilepsy. So i've been to this specialist neurology centre in Liverpool and they were great. My usual neuro - whilst a brilliant neuro - is rather stern and dour, but at this place they were really friendly and i felt like i was listened to.

I have an appointment for an MRI already on the 28th of november (getting one within a couple of weeks is pretty much unheard of in the UK) since i haven't had one in ten years since i was diagnosed, and am being scheduled for a VEEG which will probably take place sometime in the new year.

The neuro said he wants to consider whether i'd be a possible candidate for surgery, so these are kind of the initial tests to see exactly where the seizures are coming from. I told him my last MRI came back completely clear, but he pointed out that technology has advanced since then, plus ya know, it was 10 years ago.

I'm trying not to think about the possibilty of surgery at the moment since it's only a remote thing, and the testing could take years anyway, but i'm worried about the VEEG.

I'd like to hear from people who have had one. He said it would be a five or possibly 7 day stay. Some worries though - what if i have no seizures at all during the week? Also i get no warnings and sometimes i'm not aware i'm having a seizure if i'm on my own. I'm also not 100% convinced whether some of the blank moments i have are actually seizures or if i'm just spacing out, so what happens if i press the button and i'm just being dopey? Or if i don't press it at all and have an absence or a partial?

I'm not sure i'll have visitors because this place is miles and miles away, and would be awkward for family/friends etc to get to, so i don't have anyone to notice to press the button for me.

I'm probably way overthinking things.

Anyhoo, hi again!

 

[petero]

I am recommending getting the VEEG. It’s the best monitor for seizures in finding out if surgery is a feasible thing (though surgery doesn’t entirely cut out the seizure possibility), and so it’s a great data pooling or the doctors. On top of that it could be a possibility for you to see a video of your own seizures which could be compelling toward your attitude for surgery. Like, making you also think stuff like “dayymnmm so is THAT what and how strangers see me do when I’m ictal in public?” stuff. Informative. Strangers need to be informed as to the ictal too though. Screw’em.


Sent from my iPhone using Tapatalk

 

[Nakamova]

I'd like to hear from people who have had one. He said it would be a five or possibly 7 day stay. Some worries though - what if i have no seizures at all during the week? Also i get no warnings and sometimes i'm not aware i'm having a seizure if i'm on my own. I'm also not 100% convinced whether some of the blank moments i have are actually seizures or if i'm just spacing out, so what happens if i press the button and i'm just being dopey? Or if i don't press it at all and have an absence or a partial?

Ideally, the vEEG will help sort out what things are seizures and what aren't, so you shouldn't worry about when to press the button. There are no "wrong" things for you to do during an EEG. Your neuro should give you some guidance on what the different outcomes would be depending on the results.

Folks will weigh in, but in the meantime here are a few threads about vEEGs from the CWE archives:
https://www.coping-with-epilepsy.com/forums/f23/thoughts-veeg-12017/
https://www.coping-with-epilepsy.com/forums/f23/veeg-progress-12215/
https://www.coping-with-epilepsy.com/forums/f23/auras-veeg-24280/
https://www.coping-with-epilepsy.com/forums/f23/veeg-4211/

 

[Loopy Lou]

Oh, Petero, i definitely wouldn't want to see what i look like, i can't even bear to see someone having a seizure on say, a tv show without coming out in a bit of a cold sweat!

I will be having it for definite, because whilst the thought of surgery does scare me, i've only had a half hour EEG before and i'd be interested to see what exactly is going on in my brain.

Nak - thanks for the links! It's possible i've read some of them in the past, but my memory is terrible so i'll have a perusal :banana:

 

[Loopy Lou]

Also, what if my MRI comes back as normal again? Obviously this would be a good thing, but surely if they can't see anything on it they wouldn't be able to do surgery?

I'm still not sure i want to have it, but i do want my life back. I worked so hard to get my degree, but am having serious trouble getting employment. I want to be able to drive and feel like i have independence again, but even surgery isn't a guarantee of sorting that out.

And there was me saying i'm going to try not to think about it. Ah well, i think i'll try and take it a step at a time and see what happens as i go along. I'll try and remember i have this thread open and update it as i go.

 

[Porkette]

Hi Loopy Lou,

I had the video e.e.g. done before I had my main surgery but when they did my video e.e.g they put the electrodes directly on my brain then I was on camera around the clock unless I was in the restroom. This helped the Dr. pinpoint the locations that were triggering the seizures. Later on I had a SPECT and PET scan along with a WADA test these tests will show a lot of detail. I wish you the best of luck and May God Bless You!

Sue

 

[BIGMAN131307]

The video EEG is worth the time. It will help the neurologists get a better understanding of your brain activity.

Don't worry so much about the "button". It's just an extra tool to help them focus on specific days/times in the video to view.

Press the button when you feel like one of your "normal" seizures is occurring, if you can.
EX:
If you press the button 10AM the neurologists will start from there. Then see how long it
lasts. They will also move backwards and try to see anything that happens before.


The neurologists goal is finding: Possible Triggers, patterns, focal location(s), length of time, recovery.

While answering: will surgery help, can we locate the "bad area", can we safely remove it,
without making the condition worse or causing other issues?

 

[txtiger]

I had a video EEG 13 years ago and surgery 12 years ago, so I hope I can help answer some of your questions. It's definitely good that you are seeing an epileptologist. I went for years to a general neurologist, and the meds just didn't completely eliminate my complex partials. He did EEGs in his office and ordered MRIs that didn't show anything. Then I switched to an epileptologist, and that really helped. If you will be in a specialty clinic (what in the US is called a level 4 epilepsy center), the MRI should be more sensitive and able to pick up on abnormalities other MRI machines may miss. As for the video EEG, if you aren't having seizures after a day or so, they may reduce your meds to see if that makes a difference.

I hope this information helps, and as your doctor said, technology has come a long way since your last MRI. The decision is up to you, but when I was in a similar position, I wanted to at least know if surgery is a possibility. Best of luck to you.

 

[Loopy Lou]

Well i had my MRI and finally got the results, it came back clear, with no lesions or structural abnormalities, so that's good i think.

It will be upto the VEEG now to see whether or not i can be a candidate for surgery. I just hope my brain performs when i go for the EEG so they can get some good data and pinpoint exactly where the seizures are coming from, because at the moment they're not sure whether they start in the right or left temporal lobe. The specialist did say that my most common kind of seizure does sound typical of left temporal lobe, so we'll see.

It's looking like it's going to be April/May sort of time, unless they have any short-notice cancellations before then, so i better go shopping for some PJs that fasten up the front lol, last thing i want is to be stuck wearing the same thing all week, especially when i can't shower!

 

[Porkette]

Hi Loopy Lou,

I wish you the best of luck when you go in for the video eeg. My Dr. had me eat foods that would trigger seizures for me and cut me back on my seizure meds so I would have seizures sooner and they could pinpoint the areas of my brain that were triggering seizures. Mine started on the right temporal lobe but when I went in for the main surgery they found damage on the left temporal lobe that was so deep in the brain not a single test would show it. If you know of any foods of beverages that trigger seizures let your Dr. know and bring them with you to eat then the seizures will happen sooner and you can get out of the hospital with results. I wish you only the best and May God Bless You!

Sue

 

[CQ:)]

hi Lou
April / May seems to be a long time but it will be here soon in enough. I hope your brain performs and it helps the specialists get the info that they need

 

[Nakamova]

Keep us posted Lou, I hope the process goes well.

 

[Sabbo]

I hope you get some answers about your seizures with the VEEG. I've never had a VEEG done, but even the regular EEGs that my neurologist has had done have helped.

 

[Loopy Lou]

Well i got a phone call today saying that they've got space for me next week, so i guess i'm going in on monday! To be honest i'm glad they're getting it done with earlier rather than me having to wait and worry about it until april/may time.

Currently making a list of stuff i want to take with me, and i don't think my suitcase will be big enough lol. It's gonna be a loooooooong week i think, i just hope it will all be worth it and my brain behaves (or misbehaves as the case may be?)

So far i've got the usual stuff on my list, toiletries, clothes etc, and added in my Nintendo Switch and a couple of games, some juice, a couple of books including colouring book and pens, my kindle, and associated cables for various things. Oh, and my stuffed Stitch (as in little blue alien from Lilo and Stitch) because i'm a big kid.

I'm a little worried, because even though i quit smoking two years ago, i've been doing it with the help of an e-cig which i'm still using. I'm phobic of sticky things, and the only thing they can offer is nicotine patches, so i guess i'm getting over my nicotine addiction next week also, eek.

Wasn't expecting it to be quite so soon, so i'm getting myself a bit flustered, trying to think of everything i might need!

 

[Sabbo]

It's good that you will be having the Video EEG sooner. I recall that CT Scans my neuro did showed scar tissue in an area which also affects my left eye's vision. At that time, I only had simple partial seizures (complex partials began about 19 years ago).

 

[Loopy Lou]

I've been having something weird going on with my left eye lately, but i don't think it's a seizure, maybe more of an ocular migraine? No headache, but i get rainbow flashes that start like a little jagged rainbow, then cover my whole eye til i can't see, then it goes away again after about 10-20 mins. I wonder if that happens maybe they'll be able to see it on the EEG. I've only had them every few months or so, not like a regular thing.

 

[Nakamova]

I've been having something weird going on with my left eye lately, but i don't think it's a seizure, maybe more of an ocular migraine? No headache, but i get rainbow flashes that start like a little jagged rainbow, then cover my whole eye til i can't see, then it goes away again after about 10-20 mins.

Not sure whether it's an ocular migraine or a partial seizure, since both can have that symptom (called "scintillating scotoma"). I used to get that every now and then. Oddly enough, since I started having tonic-clonic seizures, I've never experienced the flashing again -- maybe it's something my seizure meds are suppressing.

 

[Loopy Lou]

I asked my optician about it and she said it sounds like ocular migraines except they usually affect both eyes. I just figured 10-20 minutes was too long for a seizure. It was really bizarre the first time, and a little scary, but i've heard some people get full on migraine headaches after them. Thankfully i seem to have grown out of migraines a little since my late teenage years, used to have awful ones at school!

Actually, come to think of it, i was first put on anti-epileptics around age 21-22, wonder if that's why i don't get the head gripping, room spinning ones anymore onder:

 

[Loopy Lou]

For those who have had VEEG's before, did they allow you blankets during the night? My body temperature drops a lot during the night, and being cold is pretty much the only thing that will stop me sleeping. I'm so worried about being cold and shivering, perhaps affecting the eeg!

 

[Porkette]

Hi Loopy Lou,

Here's wishing you only the best of luck with the video EEG. I was allowed blankets because I was always freezing cold even in the summer months. I don't know if the Dr. will allow the Nintendo because it may mess up the e.e.g. do the electro magnetic field it has. You may want to ask your Dr. first before you bring it with you. I was only allowed my pajamas, robe and toiletries along with a book and of course I had the tv in my room which helped. I was able to get up and walk around the room and the only time I was off camera was when I was in the restroom. I will say that I was tired from the seizures I had but the Dr. cut me back on my meds and made me drink diet soda that triggered seizures for me like crazy. Here's wishing you only the best and May God Bless You!

Sue