Being sent for another opinion (and veeg questions)

[Loopy Lou]

Had a neuro's appointment yesterday. I've been having them a little more frequently lately, every 2 months rather than 6 months as i've been changing medications over the last year or so.

I recently started briviact along with the clobazam and a reduced dose of Keppra, and it hasn't made any real difference to the amount of seizures i'm having, particularly the absences and partials.

My neuro has said numerous times previously that he thinks i'm refractory, since over the last 10 years or so i've tried so many medications that either didn't work, made things worse, i developed resistance to, or caused horrific side effects. I even said to him that maybe not all of these blanks are seizures, perhaps some of them is just daydreaming or zoning out, i'm really starting to doubt myself now. I only seem to have a couple of tonic clonics a year now though so that's an improvement.

So now he's referring me to another hospital, miles away to seek a second opinion and see if anything else can be done, and to have a VEEG done to see what is actually going on in my noggin.

It was hard enough to get to that hospital since it's not in my town (and obviously i can't drive), but this one is much, much further away. I do want to know what's going on though, i was telling him about how i did well at uni, and i really need to be able to learn to drive and get into work, he doesn't think either is a good idea right now. Still firing off job applications here there and everywhere though.

Don't neuro's usually order veegs when they're thinking of possible surgery? I'm not sure how i feel about that, although i guess i'll have to wait until i get the referral and see what they say. He mentioned that this hospital had a better MRI machine too, and since my last one was when i was diagnosed 10 years ago, it might be a good idea to get a new one.

Anyone who's had a VEEG - did it make a difference in your treatment? Did they find anything different to when you had the short EEG? I know about the actual procedure which sounds like it sucks, but if it gets me somewhere it'd be worth it.

I think maybe i just wanted a rant, yesterday was a tough day

 

[suebear]

I've gone through quite a few VEEGs in my life to determine what is going on inside as it's valuable information to determine the brain activity and what area of the brain could be causing the seizures to act out.

Yes, the VEEG is done prior to surgery for brain mapping purpose but the VEEG is also done as an update as I mentioned especially if VEEG has not been done in a few years, or on medication change, or if there has been a change in seizure activity. VEEGs are quite helpful with the mapping that is shown as it gives a very good reading to the person who has ordered the procedure.

If you have further questions about the procedure my suggestion is to question the doctor who wishes to place the order in. Know that you can always talk with the radiologist about what the VEEG does while they are working with you and they will openly answer your questions. I hope that has helped.

 

[Loopy Lou]

hmm i was diagnosed in early 2009, but i've only ever had the one MRI and an hour long EEG.

I've been reading up on the process of it, but i'm not sure i could hit a button whenever i think i'm having a seizure because often i don't notice them myself unless it's a sensory thing, or i've obviously missed something. The NHS aren't too fond of ordering or repeating expensive tests, so if they offer this i'll have to take them up on it.

I said to my neurologist the other day that i feel like i've missed out on the last ten years and i just want to see if anything can be done, but he thinks i'm most likely refractory so wanted to get the second opinion and more tests done.

It'll probably take months for an appointment to come through anyway, so i suppose there's no point worrying about it just yet!

Thanks for the insight Suebear

 

[Porkette]

Hi Loopy Lou,

I've had many veeg's because my Dr. wants to be sure that no more brain damage has spread do to the amount of seizures I have each yr. I also had the veeg before I had surgery also. I found out that cell phones were triggering many of my seizures do to the frequency of the cell phone. My Epileptologist had 4-5 staff turn their cell phones on while I was having a veeg and I had no idea they were doing this. After the test it showed that each time staff used their phones spikes went up on the e.e.g. reading which now explains why I have seizures when I'm in the store or at work and a lot of people are using their phones at the same time. Here's wishing you well and May God Bless You!

Sue

 

[CQ:)]

Hey Lou

I'm sure I've told you my story heaps of times when we chat lol.

I've had 2 VEEGs.
The 1st one was late 2009 as part of my pre surgery testing & I was in for 5 days.

I had my surgery in 2011 but started having 'funny feelings' again in 2013. We tried medictaion adjustments & monitored them but in 2015 my neuro said he'd like to do another VEEG so he could see what was going on.

I was supposed to be in for 5 days but took 5 days before my vrain did anything so I ended up being in for about 8 days. In the end the neuros got a ton of info to confirm I was havign focal seizures (partials) again.

Where I live there are only 2 generalised neuros so I had my surgery & go to the epilepsy clinic at a hospital in the city. It takes about 3 hours each way driving but I take the train so it's closer to 4 hours each way, I do it in a day when I have to go down for my follow ups with the neuro so it's long. In the ned it's worth it for me as theyre great drs & have more resources.

Good luck with everything, let us know how it gos