Let's talk about brain surgery

[Elaine H]

Good Morning Sam

Please, don't think that we are all happy to be branded EPILEPTICS!!!!!The majority of the folk on this website have epilepsy, or are connected to it in some way, but in no way do any of us want to be labelled, and especially by the great unwashed public past and present, as EPILEPTICS!!!! You haven't read any of the previous posts eh? It is a truly despicable word, and unfortunately, conjures up archaic visions, of people on the floor, foaming at the mouth, convulsing, kicking and screaming,pissing themselves, victims of "The Falling Syckness" and posessed by evil spirits and demons!!! I am a human being, I have a condition called epilepsy, and thankfully, of the forty odd different types of epilepsy, I am lucky enough to have the relatively mild Complex Partial ones, I am not of a lower intelligence than my peers, friends and family, but have unfortunately had some horrendous things said to me in the past by idiots, who simply don't engage the brain, before putting the mouth into gear especially employers!!

Hopefully, between us all, we can educate the public, and in the coming years, people with epilepsy won't be subjected to this incredible ignorance and stupidity that we are in this, the 21st Century!! Call youself an "Eppy" if you want Sam, but I prefer to be a PWE, as the UK based Epilepsy Action says, a person with epilepsy.

Best Regards

Elaine. A person with epilepsy

[Elaine H]

Hi Melinda

I had my right Hippocampus removed in June last year, sorry to say that it has not stopped my seizures, they are greatly reduced, but I now don't get any warning, and I am actually recovering from a seizure as I write, terrifying!!! I had a Temporal Lesionectomy in Sept 2000, and was five wonderful years seizure free, and no one has ever really been able to explain why they came back to haunt me again, I always think of the brain as the most complex and deep dark mystery in the history of mankind, each of us complete individuals, completely unique, and I don't think the medical profession really understand epilepsy, maybe never will!

I hope that your daughter gets her seizures under control, be positive, and do what I do every day of my life, I think of all the folks out there with cancer, and horrible terminal conditions, I deal with my "wobblers" by learning as much as I can about epielpsy, talking to people, and of course, trying to complete the book I'm writing about my experiences with it. I have to upbeat and positive about it I really do! Bless you both, keep us posted as to how she gets on, and I hope that you find this website a comfort and help to you, it sure is to me.

Best Wishes

Elaine xx

[Mike]

Ive had the Wadda, I had R.T.L surgery in 1998 it didnt work for me but wouldnt change my mind about having the surgery. It made me become who I am now. I try to stay focused on others now and it makes me realize how good I really have it. Others even in this forum have it worse than me. Ive got a great support group, My wife and son are so good to me. It makes it hard to feel anything but graditude.

[Sandy Deering]

Yes you are. Its a wierd test but ya gotta do it. I think its interesting. It tells much more than speach.I had a rtl but now I am having seizures from there and the lt lobe to. But I have had much more issuse then just surgery.

Its your short term memory thats on your left and your speech is on your right, i've had a pre-op with neurologist Physcologist for the wada test. Its to see if my good side will take on my memory for me, is so then its more brain surgery totry and reduce my seizures, althoughit won't take them away fully because they can't take away all of the tumour. Hope i have some good luck really need it. Fingers crossed. I will keep you informed it you want to know

[Mike]

sure Id like to know you make out, Ill pray for surgery to be successfull.

[Shelley]

http://discovermagazine.com/2009/may...d-right-brains
many interesting side-bars as well.

[Mike]

Thanks for the cool information on the brain, Nerofeedback has turned my brain into a sponge that loves to learn! Im always really interested in the latest research on epilepsy and brain related stuff. It gives me the chance to pass the info. on and maybe make someones life better. You know KNOWELDGE IS POWER!!!

[ColmanMac]

Im very much in the dark re brain surgery. There is an op I can have to address the probs encountered since I last almost shook hands with the Banshee.
My trouble is that the surgery is reported as being a greater risk than continuing current meds regime. My consultants are all for me going under the knife - but my GP (who Ive known for over 20 yrs & lives 3 houses away) is dead against it. I really feel like between the divil & the deep blue sea!

[stephk]

I am kinda with you ColemanMac, i think at the very most it will be a last resort for me, eventhough that is what my neurologist is tossing around right now. Yes it could work, but it might not, and it is a serious step. I have two young children that i have to worry about and there are still meds that i have not tried yet, and i am kinda feeling that if i am in the dark about most of my triggers than my docs are too. Personally i am going with my gut on this, that is actually what brought me here, and at current time i feel the risk out weighs the benefits... that is just for me though.

[Mike]

I had the surgery but wish that I hadnt! Try every other thing you can first! I believe that the ketogentic is the most successfull treatment. Do the research, its a big step and my not work, believe me it wont be the same.

[ColmanMac]

Hiya Mike and StephK;

My prob comes from a leak in a blood vessel between various lobes which is dripping into the prefrontal cortex. This itself isnt a problem - that happens when the leak causes amajor seizure which transpires to SE - which is where the concerns/hospital/etc occur.
Its like putting an egg cup under a dripping tap. As long as water drips into egg cup & stays there = no problem, but when it spills out, triggering seizure = Big Probs.

The op involves trapdoor surgery, cutting a flap of skull away to expose and clip the vessel. The surgeons only have 3 mins to do this as my oxygen has to be cut whilst they operate. So, 2 mins, 55 secs = no probs - but 3 mins, 5 secs = "Oh shit", as my GP tells me!
Col.

[Shelley]

Yeow. You leak a little blood into the prefrontal cortex. Did they call it an aneurysm?
I think what most people have had here are varying lobectomies, where affected parts of a specific lobe have been sliced away to end seizures. Not sure about an aneurysm repair job.As a person born oxygen deprived, I can tell you it's not fun. While 90%+ of my seizures are absence, with the occasional myoclonic jerk, I'm almost always in a type of fugue state.
Does this sound like you: http://www.surgeryencyclopedia.com/A...sm-Repair.html
I did a search with "brain surgery to repair an aneurysm"on google. I am taking a wild stab that this is even coming close to your concerns, however, varying the words in the search may yield results closer to your needs.
Hugs to you.

[Shelley]

Here's some more links: http://www.youtube.com/watch?v=EnR1D9_Xgv0
http://www.mayoclinic.com/health/brain-aneurysm/DS00582
This sort of sounds like me: http://scopeweb.mit.edu/?p=258
Try this: http://www.righthealth.com/topic/Blo...9&kgl=39868016 this comes from a direct google search for brain surgery leaking blood into the brain.
I have no clue if this will help you at all, but please note that we are here for you. We will help you do whatever research necessary to get you the best info out there, so you can have the best possible outcome, whatever your decision.

[Cint]

Mike,

Here you stated:

Ive had the Wadda, I had R.T.L surgery in 1998 it didnt work for me but wouldnt change my mind about having the surgery. It made me become who I am now. I try to stay focused on others now and it makes me realize how good I really have it. Others even in this forum have it worse than me. Ive got a great support group, My wife and son are so good to me. It makes it hard to feel anything but graditude.

and then you said:

I had the surgery but wish that I hadnt! Try every other thing you can first! I believe that the ketogentic is the most successfull treatment. Do the research, its a big step and my not work, believe me it wont be the same.

What changed your mind in just a few months?!

As I've said before, I had a LTL and it made my seizures worse than before surgery, along with the depression, memory loss, word finding, etc., so I wouldn't suggest brain surgery to anyone.

[Mike]

Because life changes all the time. Thats one thing we can be sure of change is always around the corner. Seizures and the aftermath always depress me for awhile. I seized twice over the past sereral months due to medication adjustments. Since brain surgery my nocturnal seizure is followed by a period of postical confusion that scares my wife so much that she calls for help. It was better before the surgery because she could handle me. Now its more complcated.

[ColmanMac]

Hi Shelley & hugs back - Oddly I feel worse after a PS than a grand mal+, etc. Consultant says it's coz. with a grand mal I'm kinda "sticking fingers in the electrics & blowing away cobwebs"(!) - Whereas with a PS I can walk for 2-3 days in a fog, headaches, nausea, etc.
Worse bit of everything is I have no short term memory - you tell me something now & I'll forget it in 20 mins - but I'll remember it in 2 hrs, but like what you told me was my idea in the first place!
Sleep pattern is also totally up the duff - like permanent jet-lag- I can be flat out in bed @ 6pm; but awake @ 2am; the flat out again @ 10am; And awake @ 6pm - Total crazy (But then I am Irish!!).

Take Care - Fancy being pals? I promise it'll be fun!
Col.

[ColmanMac]

Hi Mike & thanks for the msg. I think what concerns me most is that theyr'e thinking of doing the op via my groin!

I gave up being a chorister when I was 15!!!

Col.

[bella0809]

ColmanMac, If they're going up through the groin, why are they cutting the skull? I know they go up through the femoral artery for the Wada, and the skull is cut for the lobectomy, but not both for either.

[Mike]

Maybe its a new procedure. They are advancing in tecnology very fast. If I had waited untill now my outcome could have been better. Theres always risk with any surgery.

[ColmanMac]

Hi Bella - You know the saying - "I'd rather have a Bottle infrontome than a Frontal lobotome"!!

Sorry - but I told all I was a total loon!

Col.