[positron]

I haven't been checking this thread in a while - and wow, I am trilled to read a success story. Many congratulations for getting thru the procedure A-9-AT-MOST, and I really hope it works out for you.

[Dionysus]

Originally Posted by A-9-AT-MOST

Early days yet but I'm post-op and seizure free since although there was an episode afterwards which, although not seizure-like, was scary enough. I was told these things are expected after such surgeries whether it be directly related to an actual seizure or due to trauma caused by the brain surgery itself so no major worries there. The main thing is that I have not had a seizure exactly as I had before the operation and am suffering little in the way of memory loss, cognitive function or speech problems.

I was having seizures at least twice weekly and were, each and every one, the scariest experiences of my life so far - hence the freaker of a post above pre-op

So, I'm optimistic about the future, once again! I have a massive scar on ma heed but hair will grow as I do from now on!

Onwards and upwards and I hope all works out in similar fashion for all posters on this thread. Your stories have been very helpful as have some of the posters I have contacted directly. Thanks to one and all and god bless.

Superb news, A-9-AT-MOST. How have things been since?

[Joey the lips]

I will be back later in the week to share our story but for the moment I will just read yours and thank you for shareing your thoughts.

[emzolita]

Originally Posted by A-9-AT-MOST

Early days yet but I'm post-op and seizure free since although there was an episode afterwards which, although not seizure-like, was scary enough. I was told these things are expected after such surgeries whether it be directly related to an actual seizure or due to trauma caused by the brain surgery itself so no major worries there. The main thing is that I have not had a seizure exactly as I had before the operation and am suffering little in the way of memory loss, cognitive function or speech problems.

I was having seizures at least twice weekly and were, each and every one, the scariest experiences of my life so far - hence the freaker of a post above pre-op

So, I'm optimistic about the future, once again! I have a massive scar on ma heed but hair will grow as I do from now on!

Onwards and upwards and I hope all works out in similar fashion for all posters on this thread. Your stories have been very helpful as have some of the posters I have contacted directly. Thanks to one and all and god bless.

I had that surgery, your hair will grow right over your scar and you cant see it at all. and the bit thats down on your face over your ear goes invisible with healing. hope your doing well, and getting loads of rest.

Emzolita

Originally Posted by Dionysus

Superb news, A-9-AT-MOST. How have things been since?

I haven't checked this thread in a while but all is going good. I'm due back in work shortly and have had one absence episode since the surgery 3 months ago. Thankfully it wasn't like the seizures I used to have prior to the operation and really down to my own mismanagement of the illness (i.e. I was quite tired, dehydrated, overly warm, placing unneccessary stress on myself, etc..) which triggered an absence of about 60 - 90 seconds about 6 weeks ago. I'm starting to be much more aware of these triggers than I was prior to the operation and am dealing with them as they arise with no auras since.

Overall I'm very happy with how things are going and I am much more confident in myself. If you offered me my current situation prior to the operation I would have taken your hand off!

[Adamantium]

Originally Posted by Soirbhíoch

My story.

I was diagnosed with epilepsy at seven years of age following an accident. I had collapsed and fallen unconscious one morning while looking for my schoolbag, an ambulance was called and I was brought to the Richmond hospital in Dublin. About ten days later they released me with a diagnosis of epilepsy. My initial fascination with all the attention quickly dissipated when I was given a list of foods I was no longer allowed to have, drinks I was no longer allowed to drink and, of course, a bike which I was no longer allowed to use. I was more hurt that I couldn't eat/drink/do these things when everybody else could than anything else: I didn't want to be different. From that time on I was the different kid in school, the kid who had twelve attacks per day, slept through most of school and then, most fatally for my future, disrupted the class as I felt so behind. I rebelled against everything from that early age, and I comforted myself by eating junk food.

Fast forward ten years and I was firmly behind every kid in the class, and was merely appearing in school everyday. I held out no hope of ever catching up with them. This was long before "resource teachers" and SNAs (Special Needs Assistants) made an appearance in Irish classrooms. That extra help would have saved me and changed all the fundamentals of my life. At any rate, I sat the Leaving Cert and got, I think, an honour and a pass. That was it. Seventeen years of age with nothing. The seizures continued although their pattern changed over the years. No longer was I falling to the ground but the damage to my education had been well and truly done.

After school I went into a succession of jobs; retail work and bar work mainly. At 21 years of age and on 1500mg of medication per day my seizures persisted unabated. And I lost that succession of jobs. It was after one employer let me go that I couldn't take it anymore. He was really, really nice about it. That mattered. He found out where I lived, drove out and spoke with my mother and was there when I arrived home. I had an attack at work earlier that day and all the glasses on my tray collapsed so I had to tell them then that I had epilepsy (usually I had a warning and could go somewhere private to have my attack). His kindness made my situation all the more poignant. At that point I had long since stopped visiting my consultant and lived in a state of underlying hopelessness. After that incident, and at the insistence of my despairing then girlfriend, I went back to my consultant with a very, very clear agenda: I wanted to be considered for brain surgery.

My surgery

For the first time ever, I told the consultant I couldn't take it anymore. I had never been so serious. I did not want to live a life of this standard anymore. He booked me into the Blackrock Clinic (I was a public patient) for an MRI the following week. I was astonished at the speed he moved at on that day; prior to that I just went for the standard EEG so this was the first development in my fifteen years of having epilepsy. I felt I could fight and win this. After that, and with the attacks continuing, I went to the consultant more often and instead of waiting outside the door for the usual 1.5 - 2 hours I knocked on it when an attack was coming on so that he could see me having an attack and understand better what I was going through. I was alive with hope and resolute with determination. In one of those meetings he told me that I had temporal lobe epilepsy on my right side and that he and the neurosurgeon believed it could be operated on successfully as it was localised scar tissue. I couldn't believe it. A few months later I was in Beaumont where they withdrew my medication, hooked me up to a machine and video recorded me for a night or two to see what I was like when I had seizures. I subsequently attended a series of meetings with a clinical psychologist who assessed various parts of my intelligence and, finally, a psychiatrist specialising in epilepsy was brought in from Britain to assess if I was mentally fit to be operated on.
The following year I underwent brain surgery on my right temporal lobe. Prior to the surgery I had been told that I had a 70% chance of the surgery being successful and I did it because I arrived at the belief that having a better standard of life was more important to me than continuing with the life I had. That may sound melodramatic to the outsider: it wasn't. It was raw despair and hopelessness shaped by experience.
Five days after surgery later I walked out the door and in the subsequent weeks the strangest, most unexpected feeling of all happened; rather than delight or even relief, I was afraid. Before the surgery I had hope that I could be cured. In the weeks following it, it really dawned on me that if it didn't work I had nothing: all my cards had been played. Never before or since have I felt that fear and loneliness. It had been totally unexpected and nothing had been said to me about post operative care. The latter amounted to a single visit to my surgeon some months after and a repeat of those tests with the clinical psychologist. ‘Clinical’ being the operative word. Aside from that the neurosurgery team were superb. Words couldn’t do justice to them.
A few weeks after the surgery I had an ‘aura’, that usually nice feeling that signals an attack (and which, oddly perhaps, I missed). I rang the consultant, who suggested I take more medication. And that was it. I have never had an attack since the day of my surgery. I sat my Leaving Cert four months after my surgery and did all honours papers, passing them all (getting the honour in three). I never thought my life could change so dramatically. I wanted to go to university but didn’t have enough points for my course. However, somebody told me about an Access program where people with serious illness can apply and get into university. I applied that way and got accepted. That allowed me to change my life beyond the wildest dreams of the kid who was behind everybody in school, finally leaving university with a doctorate to my name.

going through chronic pain of my own and that situation is very similar to mine especially in regards to college education, really inspiring!

On 20 October RTÉ showed a programme entitled 'Living with Epilepsy'. It followed several people with epilepsy, including a 17-year-old Dublin lad and a 30-year-old Wicklow woman who has just undergone brain surgery to cure her epilepsy. It will only be available on RTÉ Player until Thursday 10 November 2011, so try and watch it soon. It's only 25 minutes long.

I could really relate to that lad saying "I just hate being a worry to everybody else". It is horrible for self-esteem. That annoyed me so much and led to my leaving home at 18 and staying as far away from family as possible.

Listening to that woman who had brain surgery brought back memories of my own surgery when I was 22 back in 1996. Like her, having surgery totally transformed my life. If your seizures are localised, and you cannot control your epilepsy with drugs, I would highly recommend that you at least consider surgery. As I said in the op, it was the best thing I've ever done. It's not near as scary as it sounds.

[princessdippy]

I was diagnosed with epilipsy when i was 9!! my first seizure was when i was in a family holiday in Kerry! i had 3 before i was diagnosed and started on epilim... they think my epilipsy was caused by bacterial meningitis i had as a baby. It was tough having it as a kid because i put on so much weight so was teased all the time for been too fat... it sucked!! i use to have seizures just at night but mum said i use to call out before my seizures so she was able to turn me on my side.. she also said i had a metallic taste that day so she knew i was probably going to have a seizure which was probably lucky in a way!! i remember one seizure though i was jerking so badly i damaged my hip and i couldnt walk for days i remember my dad having to lift me everywhere and i was in so much pain it was awful... I was 12 then and i was on epilim and lamictal and i just decided to go off all medication!! i didnt like been different and probably rebelled againest it! but amazinly i have been seizure free since 1999!! my doctors said i grew out of it!!! so yeah success!!

waiting on call from beaumont to go in for surgery thatns to those who have shared their stories on deciding to go for it , it has really helped to reassure me. will update once I have op over

[alliejane]

waiting to go in to beaumont for op to try to become seizure free as drugs in many combinations have not worked, thanks to all for sharing their experiences has made me feel a lot better about my decision to go ahead.

will up date on progress as soon as I can

merry christmas to all.

Hi


I had left temporal lobe surgery in 1996 and it was very successful. I had been seizure free. Go for it and you will be okay.

9213caroline

[notsobusy]

I had my first seizure at 24 back in 2008. I had never experienced anything like it before. I was in Australia on a working holiday and I was staying with a friend the night before I had my seizure, we went out for dinner had a few glasses of wine, nothing big!! Got up to go to work the next morning. I felt very very groggy like I had drunk about 5 bottles of wine. I fell over in the shower. Again I thought I must have drunk alot more than I thought I had and was still drunk.
I remember walking down the st with my friend and I dropped my handbag with everything in, but I didn't just drop it, it was like I had thrown in. I was looking at my phone and couldn't focus on the screen and it kept falling out of my hands.....then I fell over, so badly I ripped through the knees of my jeans and literally lacerated the palms of my hands and knuckles.

I remember my friend asking me was I ok and I couldn't speak!!! Then nothing. Woke up in an ambulance. I was listening to the paramedics before I actually woke up and could here them discussing me, that I had seized for 10 minutes and then been unconscious for about 30 mins.

The hospital were amazing, their neurologist did tests on me that day. Yes I had had a seizure but they were reluctant to diagnose me with epilepsy as I had no history of it. I had been through an incredibly stressful situation at home in Ireland before I went out to Oz to get away from it all. So they put it down to stress. I was put on meds, had numerous MRI's etc and still the wouldn't diagnose me with epilepsy. I was put on Epilim, I ate like a horse and put on loads of weight but no seizures. I stopped drinking any alcohol as I was told not too. I came home went to see the neurologist here. He seemed happy enough, he thought I might have JME but again wouldn't diagnose me.

I had a second seizure about 14 months later due to my own ignorance. I stopped taking my meds and started drinking again and was out with friends one night. Drank alot of red bull and vodka and had a seizure the next morning. I recognised the signs straight away and my friends bundled me into the car and took me to hospital. I remember getting into the car but not afterwards!! My friends said that I passed out and didn't actually seize but I was really really sick for about 2 weeks afterwards. Couldn't walk around as I would feel like I had vertigo and was dizzy all the time. I started taking my epilim again and took it religiously!!! About a year later I wanted to change my meds as I didn't like the side effects of epilim and also wanted to start a family with my BF so my neurologist switched me to Keppra. I take 1000mg a day and it took a while for it to kick in. I felt like a leprachaun on speed for about 3/4 months then it all relaxed and the only side affect I get is that I get depressed alot easier than I used to but am learning to live with it. I am also expecting my first child and so far no problems. I have been for extra tests to make sure that baby is ok and so far everything is normal! I will be 3 years seizure free in November so hoping to go back to my neurologist after this and see if I can be weaned off the meds!

[godmother]

Id consider myself very lucky so if I were you.I underwent a partial temporal lobectomy aswell with the same surgeon but was no better after it.Went to London to get a second opinion privately aswell.Had to bring my file with me and naturally I had a glimpse at it.On it I seen that the wrong part was taken out.
Then I understood why I didnt achieve my 90% .Now I have no job,no life.I wouldnt be able to hold down a job.What I would like to know is how these surgeons get paid to do these things.

[notsobusy]

That's appalling GM, I really really feel for you. How on earth did they take out the wrong part??? and what did the dr in the UK say? I am happy enough to stay on my meds for the time being, I really don't want another seizure and as long as they are doing no harm to baby then I don't see why I do need to be weaned from them.

[godmother]

I wish you the best of luck.Hope I make it that far.On a lot of the old meds.Tried keppra but it didnt work for me.Guess Im just one of a kind.
On trileptal retard aswell.450mgx2.And frisium 10mg.I dont think even the experts understand me.