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I would like to talk to people who have also had surgery

Tue, 11/01/2011 - 08:11

 

Hi everyone,

I had left temporal surgery 3 years ago when I was 24, and just wondered if anyone else has got depresssed since having the surgery, and self conscious about the scar?.  

I've never met anyone who has had epilepsy surgery, and would love to hear anyones story, and how they've felt since having the surgery, I would feel it would really help just to hear how you've coped.

:-) x

Comments

Re: I would like to talk to people who have also had surgery

Submitted by xtine on Mon, 2011-11-14 - 14:45

hi, had awake craneotomy in 2009 (had to be awake due to me being a lefty, they didnt want to mess up my speach/language)

but yep mine was also on the left side, and scar goes from above left eye, to give take base of left ear - now having been awake, during the thing, but being on max pain killers, i kept falling asleep due to the surgeons annoyance! so they kept having to wake me up - 7 hours awake though is a killer!

it was 'stapled' back up, rather than stiched up (was miffed - as sticheds is the only thing ive yet to 'gain') and to begin with i was majorly aware of the scar, trying to sleep was the most annoying thing!

i've been depressed since i regained epilepsy at the age of 10 (had 'infant spasams' that went when i was about 2) but can't go on anti-depressents, due to all the shit i take already! and i 'self harm' - by getting tattoos - have 8 at last count - if i'm going to scar self, may as well make them decent! (and working on 5 more)

i was so pleased when my epil 'stopped' for 2 weeks just after surgery, but the surgeons went 'it stops while brain sorts self out' - it bloody came back, and my seizures have changed, being worse in strength, but less 'frequent' (don't know if that's good) still have them daily though.

i've also been thrown on a new drug, can't think of name - yet to start it - due to a 'fun' incident a month ago of seizure - fall on floor - broken nose.  i plan on starting drug in new year. i actually pushed for a new drug, as i've been on my current lot since 2000, naturally varing strenght, but am on top wack of them all now - hence me going to neuro 'want new drug...'

as to scar now - 3 yrs later  - takes a hell of hunt to find since its buried under my hair, which is actually, when held 'straight' (i've curly hair) is actually waist length! - i did nothing when i had surgery, i just left my hair and so i look like cousin IT, when it's blown forward!

even though i've been on litrally EVERY drug about, or it isnt suitable for my type of epil (complex partical secondry genrilization) - though i reckon that has 'changed' as i have more 'absense' ones and more 'tonic clonic' ones - regardless - VNS has not been suggested to me.

 i doubt however VNS would 'work' having to go through the process of that at 25 - would then make me nearing 30, before it was done, if i'm thinking correctly?

 

 

 

 

hi, had awake craneotomy in 2009 (had to be awake due to me being a lefty, they didnt want to mess up my speach/language)

but yep mine was also on the left side, and scar goes from above left eye, to give take base of left ear - now having been awake, during the thing, but being on max pain killers, i kept falling asleep due to the surgeons annoyance! so they kept having to wake me up - 7 hours awake though is a killer!

it was 'stapled' back up, rather than stiched up (was miffed - as sticheds is the only thing ive yet to 'gain') and to begin with i was majorly aware of the scar, trying to sleep was the most annoying thing!

i've been depressed since i regained epilepsy at the age of 10 (had 'infant spasams' that went when i was about 2) but can't go on anti-depressents, due to all the shit i take already! and i 'self harm' - by getting tattoos - have 8 at last count - if i'm going to scar self, may as well make them decent! (and working on 5 more)

i was so pleased when my epil 'stopped' for 2 weeks just after surgery, but the surgeons went 'it stops while brain sorts self out' - it bloody came back, and my seizures have changed, being worse in strength, but less 'frequent' (don't know if that's good) still have them daily though.

i've also been thrown on a new drug, can't think of name - yet to start it - due to a 'fun' incident a month ago of seizure - fall on floor - broken nose.  i plan on starting drug in new year. i actually pushed for a new drug, as i've been on my current lot since 2000, naturally varing strenght, but am on top wack of them all now - hence me going to neuro 'want new drug...'

as to scar now - 3 yrs later  - takes a hell of hunt to find since its buried under my hair, which is actually, when held 'straight' (i've curly hair) is actually waist length! - i did nothing when i had surgery, i just left my hair and so i look like cousin IT, when it's blown forward!

even though i've been on litrally EVERY drug about, or it isnt suitable for my type of epil (complex partical secondry genrilization) - though i reckon that has 'changed' as i have more 'absense' ones and more 'tonic clonic' ones - regardless - VNS has not been suggested to me.

 i doubt however VNS would 'work' having to go through the process of that at 25 - would then make me nearing 30, before it was done, if i'm thinking correctly?

 

 

 

 

Re: I would like to talk to people who have also had surgery

Submitted by sberra01 on Tue, 2011-11-22 - 21:44

Hi Beeba and everyone else-- I had my surgery on October 14th, 2011 -I had a frontal lobectomy at Mayo clinic in Rochester. My last official seizure was Oct 13-th-- I am still on my meds--(for about 2 yrs they say)I  suffered from complex partial seizures but also had some grand mals mixed in(for fun)--I am very surprised at how well my recovery has gone--I'm sure by the faith of God. The surgery was about 4 hrs--I went in on a Fri and they sent me home the following Mon. My scar starts above my right ear and goes to the middle of my forehead I guess you would say. (and as you well know-sorry)As far as being depression I don't think I have experienced that. Sorry to hear that you have. My hair will cover the scar and bangs will cover what's noticable in the front. He mentioned plastic surgery but --no thanks. Hang in there and please feel free to email me anytime.

Hi Beeba and everyone else-- I had my surgery on October 14th, 2011 -I had a frontal lobectomy at Mayo clinic in Rochester. My last official seizure was Oct 13-th-- I am still on my meds--(for about 2 yrs they say)I  suffered from complex partial seizures but also had some grand mals mixed in(for fun)--I am very surprised at how well my recovery has gone--I'm sure by the faith of God. The surgery was about 4 hrs--I went in on a Fri and they sent me home the following Mon. My scar starts above my right ear and goes to the middle of my forehead I guess you would say. (and as you well know-sorry)As far as being depression I don't think I have experienced that. Sorry to hear that you have. My hair will cover the scar and bangs will cover what's noticable in the front. He mentioned plastic surgery but --no thanks. Hang in there and please feel free to email me anytime.

Re: I would like to talk to people who have also had surgery

Submitted by kazza on Wed, 2011-11-23 - 17:20
I had a temporal lobectomy June 2009 after years of refusing the operation when my condition worsened to a point that I agreed to it. I have been left looking stupid for refusing it so long! Have only had one seizure since, when the doctors played with my drugs after a solid year of nothing. Big Tonic Clonic though so back onto Keppra I went. Nothing now for 18months. Miraculous, couldnt go a month without Complex Partials before the op. I have mood swings as a possible side effect. Short-tempered and fire up fast when I do. My neuro says it could be the op thats caused this. Husband doesn't like it but prefers it to the seizures. In the past the drugs have done depression and short-fuse on me so gotten used to it there. Maybe its the op, maybe its the Keppra, seizure free me will put up with it rather than have the seizures. All my scars are under my hair except for a wee "dent" beside my left eye that is only noticed if pointed to. I always see it in the mirror but noone else sees it until pointed out so has just become a "characteristic".

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