Laine's Brain Surgery

[Elaine H]

I just wanted to be positive with this subject, and firstly thank you all for your wonderful support and kind words throughout my recent experience, I can't tell you how much it meant to me!

I got home on Monday 30th June, I had the surgery on Thursday 26th June, it seems like a lot longer ago than that, I've just e.mailed my Professor (as you do) to thank him for his wonderful care and support over the last twenty years! He always said he would rid me of my epilepsy if it was the last thing he did!

I just want to say, I had incredible care and support from start to finish, but I have read a lot of negative stuff relating to brain surgery, and it was very off putting just before my surgery, so this is really for anyone who is facing it, or thinking about it.

I can really say that I felt very lucky to have been in a position to have been offered it, I feel sorry for the folks that I was in hospital with initially who were told, sorry, there's nothing we can do about it, and you are stuck with it, so refusing surgery would have been a bit of an insult to them!

I had a lot of bad seizures, mainly Complex Partial and some very intense auras before my operation, I know that was the stress of it all, but I can honestly say that I've had nothing since, not even the hint of an aura.

I spent a lot of my time in hospital writing up my notes for my book "Fit For Life" I took a lot of photos aswell, when I get them downloaded onto this computer, I'll have to show you a couple, the only real downside of brain surgery is the mess it makes of your hair eh girls? I like to try and look my best at all times, and I wouldn't go into town this morning as I do look like I've had a bad fall out with Mike Tyson at the moment, I have managed to get my makeup on but I still look like a punk rocker that time forgot!! and I cannot bear my ears to show, and my left ear is there in all it's glory at the moment!! AAAARRRGGGHHHH!!!!!!!!!!!!!!

If you are reading this and facing surgery, please do what I have done, find out as much as you can about it, ask all the questions you can, don't be afraid, I can't say it doesn't hurt, but what's the famous saying?...."No pain no gain!" How true that is eh? I have stopped my painkillers today, nearly a week after the op, I just felt like I had a really bad hangover, it's not a pain that we can't deal with honestly! I am just so fascinated by how he did it, when I go for my follow up in August, I'm going to ask him to explain how he removed my right Hippocampus? It may sound morbid, but I have always had a genuine fascination for the human brain, I think it's a part of the body that we so have to respect, like the heart!

Anyway, I won't waffle on, but please ask me anything you want if you are facing surgery, mine was a Right Temporal Lobe Resection, and I had a Cavernoma removed form the Right Temporal Lobe in Sept 2000, so ask away, all my experiences cannot have been in vain, and to give something back is of paramount importance to me!

Love to you all, you are an amazing bunch of people!!! Please keep in touch, even if I never had another seizure again, I will never stop my "flagwaving" for the cause!! I think of all the people that are, and will be going through all the s---t that we've been through in the years to come, and I don't want that happening!

Cheers All
Loadsalove

Elaine xx

[RobinN]

So very glad to hear that you are well and on the road to recovery.

[hawke86]

It's good you had a good surgery. I hope you heal soon.

[Elaine H]

I know that if given the choice, I would much rather have FULL BOTTLE IN FRONT OF ME than a FULL FRONTAL LOBOTOMY

Hope everyone is ok?

Lol

Lainey

xxxxx

[Endless]

Hi, Lainey!

How are you doing? Can you update us? Are you feeling okay? How well has the surgery worked for you?

I agree about the full bottle. lol....

[Elaine H]

Hi There

Great to hear from you! I just dropped by to say hi really, there are so many new guys on here, I thought nobody will know me. I'm ok thanks, still having my wobblers, not as often, and certainly not as severe as they were, I am however still unemployed, still totally mad at the whole world,still not driving, but, still smiling!!
The book is coming along, and I have an article coming out in a medical journal this month,and I've done local and national radio interviews recently, so I'm staying positive, I've met a lot of people with epilepsy on Facebook, it's been a real eye opener joining that site, and I've met up with school mates from hundreds of years ago,so it's been fun!
I'm also trying to set up a website of my own, my dad has got me a domain name called www.epilepsyfit4life.com I am trying to think of the best way to set it up, and the best way to go about it, something I've never done before, I would love to help folks with employment problems, and those facing surgery for their epilepsy. I'm also waiting to start as an Epilepsy Information Volunteer on behalf of Nat Society of Epilepsy, hoping to get round the schools in my area and talk to and educate the kids, I think if we can start with them, educate them, show them that there is nothing to be scared of, this is what they have to do, this is what happens, then that will be half the battle, what do you think? It can only help can't it?
I'd love to hear back from you and how you are getting on, I'm on my own a lot of the time, so hearing from you would be fantastic! The computer is on most of the time.
Hoping all is well, and it was great to hear from you.

Very best Wishes

Lainey

xxxxx

[Endless]

Wow, Lainey! You have spent your time well. You are a role model, and an inspiration.

[alivenwell]

Wow....It's great to hear from you again! I thought about that since a focal point was known as a source of seizures. They're well controlled for now, so I'm holding off on this for a while until they're not controlled. On the other hand, the cost of medication will be extremely expensive. It's a difficult decision. Glad your surgery turned out well. I am so happy for you.

[flinnigan]

So cool Lainey Hey I'm on facebook everyday well several times a day if I must confess. We need to hook uo I'm know as Paula Flynn Godwin in the Detroit Mi area.

[CQ:)]

Hi Lainey,

You truly are an inspiration, I like your attitude that even though you still take 'wobblers' you are still going to smile. Can I ask how long after the surgery you started taking seizures again?

I'm having left temporal lobe epilepsy on 10 March, I am really excited about it at the moment but I'm sure closer to the surgery I'll start getting nervous.

I'm going to a great hospital with some of the best epitiologists & neurosurgeons. The specialists told me me there is an 80% chance it can work & there are risks involved. The way I see the surgery is if it can help reduce my auras that would be good but if it does help stop the seizures then that is a huge bonus .

I have met other people who have had the surgery (through the net & inperson) & gotten heaps of advice & tips from them. I find any information I can get is a huge help & helps me prepare for the surgery.

[dbrownpilot]

Elaine, I'm a little curious about the removal of your cavernoma in 2000. I had one removed in June 2010, and things have been really good, no seizures since. However, I'm wondering about your experiences since 2000. Should I be concerned about my seizures coming back?

Thanks!

[flinnigan]

Hey CQ I'll tell you what Lainey told me right before my surgery - Epilepsy is the safest of all brain surgery s- after all they do such a thorough work up on you they know your at low risk for stroke, heart attack etc. I looked my surgeon in the eye and asked him how many had he done and how many had he lost. His response "Over 500 and never lost one. In fact the last time he had heard of someone dying was the previous year at the Mayo clinic and he passed from a pulmonary embolism." i went in feeling very safe and secure.

dbrownpilot - I had a cavernous angioma removed in June of 2009 and am still seizure free and feel great. I had the great the fortune of spending last night with a group where my surgeon was speaking I asked him that very question. His response The longer you're seizure free the better chance of always being so. His mentor from Montreal retired and just reviewed the 1200 cases he operated on found that someone can go 10 years then have one seizure and never have another one. That one seizure may have been from a fever, poor diet, stress who knows. Most importantly and he looked me in the eye -take good care of yourself eat and sleep well my friend.

[CQ:)]

Hey CQ I'll tell you what Lainey told me right before my surgery - Epilepsy is the safest of all brain surgery s- after all they do such a thorough work up on you they know your at low risk for stroke, heart attack etc. I looked my surgeon in the eye and asked him how many had he done and how many had he lost. His response "Over 500 and never lost one. In fact the last time he had heard of someone dying was the previous year at the Mayo clinic and he passed from a pulmonary embolism." i went in feeling very safe and secure.

Hi Flinnigan,

I have all confidence in the team of specialists at the hospital that I am having my surgery done at.

I've had people ask me or my parents why am I going to have such a major operation if there are risks involved. I have also had people say there are risks involved in any surgery & if the surgery can help reduce or stop teh seizures then it's worth trying.

[flinnigan]

Not to scare anyone, hell we all know the risks of seizures, but my biggest motivator was the death of my father. His father was 63 when he died as a result of a seizure my dad was 50 when he died during his first generalized seizure. I did the math and realized my youngest child would still be in high school when I turned 50. So no brainer I was willing to take the risk.