Frontal lobe epilepsy. Surgery Anyone?

deecee1

Hi Guys,

My partner has frontal lobe epilepsy, with complex partial seizures without secondary generalization. Basically he has seizures during the night and this has now deteriorated badly. He's currently off sick as it nearly impossible for him to get up for work most days as he's so exhausted from his seizures. We're in the middle of investigations to see if he'd be suitable for surgery in London with the National Hospital for Neurology and Neurosurgery. They've given him a 50% chance of actually being able to have the surgery and a 50% chance of being seizure free after. Obviously this is a big decision and we still don't know if its possible. He's tried nearly every medication out there so this really is the last chance saloon to gain any control of his seizures. What I really want to know has anyone had this particular type of surgery and what was their experience of having it? It's a lot rarer than surgery for temporal lobe epilepsy and i've already tried the epilepsy society forum in the Uk and there doesn't seem to be anyone there that has had this particular surgery.

Any advice or experiences will be gladly received.
Thanks
D

emzolita

I got a temporal-lobectomey and a hippocampectomy. Dunno much about a frontal-lobectomy tbh,(but I did have the same siezures as your partner) but England is prob your best shot.
To get the surgery over here, you've to wait on a bed in telemetry (video-monitoring unit in beaumont) which there are only 2 beds in Ireland.
there's a huge waiting list for this, so they alternate the waiting list between male and female. The telemetry diagnoses where your seizures originate, and then you go on a surgery waiting list.

My surgery wasn't successful,but it was only after the surgery that medication worked. So whether that was coincidence or due to the surgery I dunno.
Best of luck xx

deecee1

Thanks emz. He was assessed in Beaumont about 13 year ago with no luck then but technology and imaging has moved on so his neurologist suggested being assessed in Chalfont. He's already had a 3T MRI, 7 days video-telemetry in NHNN in London, FDG pet scan and all his memory and psychiatry assessment. We now need to go back and have another MRI for mapping for surgery and to meet the neurosurgeon. We're lucky that VHI have agreed to pay for this but its a pain because we have to pay first and then claim back. The trip over during the summer cost us close to 17000 euro which we begged and borrowed from family. TBH we'd happily welcome an improvement in his seizures, we're realistic enough to know that a cure is far off. How long did it take you to recover after the surgery?

emzolita

I recovered really quickly, I was only 18 though.
I was only in hospital for 5 days after the operation, and then got the staples out at my GP's. The wound healed well. was left with 17%decreased memory afterwards, but that was due to the nature of the surgery (hippocampus)
have you inquired about getting HSE funding towards the surgery? If the surgery can't be done here, maybe they have to put forward some money?

I had to get a small op done last year to get the plates out that were left in my skull, they were causing me pain. this isn't the case with all neuro surgery patients. To get these out I got it done through the NTPF (national Treatment Purchase Fund) it's if you're on an operation waiting list for more than a certain amount of time. (I was 6years waiting now, but was seen to within 7months of contacting the NTPF)

If he's deemed successful for the surgery, and Ireland can't provide it, then get him officially on the waiting list for the NTPF, or see can citizens advice advise you on funding for an op in england.

LegacyUser

deecee1 wrote: »

Hi Guys,

My partner has frontal lobe epilepsy, with complex partial seizures without secondary generalization. Basically he has seizures during the night and this has now deteriorated badly. He's currently off sick as it nearly impossible for him to get up for work most days as he's so exhausted from his seizures. We're in the middle of investigations to see if he'd be suitable for surgery in London with the National Hospital for Neurology and Neurosurgery. They've given him a 50% chance of actually being able to have the surgery and a 50% chance of being seizure free after. Obviously this is a big decision and we still don't know if its possible. He's tried nearly every medication out there so this really is the last chance saloon to gain any control of his seizures. What I really want to know has anyone had this particular type of surgery and what was their experience of having it? It's a lot rarer than surgery for temporal lobe epilepsy and i've already tried the epilepsy society forum in the Uk and there doesn't seem to be anyone there that has had this particular surgery.

Any advice or experiences will be gladly received.
Thanks
D

I had complex partial seizures but underwent a right temporal lobectomy (with Jack Phillips) in 1996 to cure them. I had an 'aura' a couple of weeks after the surgery. That was it. Never again. I haven't look back since. I changed my life totally. Best decision I ever made. Here's my story.

I would be very surprised if the technology has not improved dramatically since 1996, and the success rate with it.

The thing that shocked me after the surgery was that there was no post-operative support. I was terrified that it would fail because if it failed I had played all my cards. I didn't even have hope left. It was a shock to me that I thought like that after the operation and nobody in Beaumont had prepared me for it. I vividly remember crying for days. I never did that before or after. I had no fear of the surgery - none at all. It was after it, when the fear of it failing hit me, that I felt isolated and devoid of support. Just be aware of the fears involved after the operation.

You're very cool to stay around. I hated having epilepsy and all those attacks because I felt like such a burden on people. Hated that feeling, that pity, that burden, people talking about me. I still keep myself away from people and social situations as much as possible. The psychological conditioning of a lifetime of epilepsy is still there unfortunately, despite my reality having changed dramatically.

Anyway, all the best. That surgery was the best choice I ever made. If you've any further questions, fire away with them.

deecee1

Thanks for your replies guys.

Emz at thanks for the info about the HSE funding, we had heard about it but the VHI are refunding us once they receive invoices. So we have gotten all our money back. It's obviously the actual surgery we will need to probably do a lot of negotiating for as this could be between 25000-40000 sterling.

Sior and Emz thank you both for sharing your experiences of surgery, they've given us some insight into what to expect post op if he's lucky enough to be suitable. In fairness the neurology team in the UK have been brilliant and when we were there during the summer we meet the nurse specialist and the psychiatrist so hopefully the support will be as good after. Fingers crossed he's actually suitable for it because we have really have reached the end of the road with meds.

Thanks again guys
D