Brain Surgery and Epilepsy

Indie_Kid

If you're not happy with what he's said to you, you can request a second opinion.

MrsManda

sandy71 wrote: »

Neuro visit didn't go so well, I asked about brain surgery to stop the seizures but he was really patronising. He said "Well someone has been doing to much googling":mad: He reckoned I had to much brain damage for it to work. I had a stroke at 18 and a serious car accident 10 years ago. He said he may see about doing an MRI to confirm.
I am so disappointed:(

*hugs* I'd be really annoyed if my consultant sounded so patronising though he is likely to be right about too much damage unfortunately. I would push to get confirmation via a fMRI though just so you know for certain (or as certain as things get with the brain ). Has he suggested any other options? I know there are a lot of things they can do to treat epilespy, but they're all dependent on the type and foci of the seizures. Therefore if the docs don't already know it's worth getting the tests to see if they can identify the specifics of your seizures. As Shel said, are you a member of a local epilepsy group or even one online? I joined an online forum (similar to this but for brain stuff) a couple of years ago and I find it useful to share experiences, just so you're not alone. Not sure I can post the details on here but PM me if you want the address or just to chat.
Hugs

WolfSong2000

sh1305 wrote: »

If you're not happy with what he's said to you, you can request a second opinion.

sh1305 is right - you can always ask for a second opinion. I've been seeing a neurologist and I find him the most arrogant p*ick - even my GP agreed after she received a letter from him. lol. He basically told me he thought I was lying when I told him about my symptoms, and it wasn't until an EEG came back abnormal that he even started to suggest that it wasn't all in my head (well, it was, but...just a bad pun, as well. lol). I was seeing him privately, too (health insurance), but to me his services just weren't worth it, so I'm scrapping him and just going back to my GP - she may not be as much of an "expert" on neurological conditions, but she has been much more helpful.

If you feel unhappy with what you've been told, get another opinion - that way, if you have two seperate neurologists/neurosurgeons saying the same thing, it'll be easier to accept, I reckon. Good luck (((hugs))).

lee5768

sandy71 wrote: »

I'm not convinced it will ever happen, he just seemed to be fobbing me off. He just added another drug to my ever increasing pile and sent me on my way.:(

I've had enough of fighting:(

ask for a new consultant dont worry about upsetting anyone.

they just said no right off to me lol my whole brain is involved I would need a brain transplant even if they could do something like that I wouldn't be me anymore LOL

yup the drugs suck.. they have had me on them all over the years and am 33 now so last year I told them I have had enough NO MORE they don't stop the fits and
they make me worse in that im doped up all the time

so they talked me into just talking epilim as I don't get side effects from that.

sandy71

Woodbine, thats exactly right. The fight is what gets to me the most, we shouldn't have to fight so hard just to get a normal life:(
I am on Tegretol, lamotrigine and now he has put me on epilim as well. I was on keppra until fairly recently and it was horrendous, I eventually attempted suicide before they admitted it might not suit me.
Glad you are ok after your op but its a shame it didn't stop the seizures.
Good luck with your hospital appt.

_shel My neuro has no bedside manner at all and I doubt very much he will have thought about me at all once I had left his room. He thinks he is god.
I am exhausted with it all and really feel like giving up totally, why is everything so difficult.
Thanks for being there, there are no groups near me and I'm not really a support group kind of person.

MrsManda Thanks for the advice, I will ask about the fMRI, didn't think about it at the time. I would like the name of the forum if thats ok.

Thank you everyone else for the support and advice, I'm running out of steam now. Had 4 seizures on Friday night and stil a bit wonky.

sarahlouise210

SAndy, I am so sorry to hear that your nuero has advised surgery is not an option for you - it may be hard to hear but the doctors do have your notes in front and if they think that you are not suitable...then its probably true! Especially nowadays, they are prepared to try if there is the slightest chance that it will "improve your life" - which it obviously would! He has agreed to give you an MRI though so that is promising. I have had loads of MRI`s but the ONLY one that found the abnormality was some kind of 3d MRI (sorry, not sure what it is called) my abnormality was so deep in the brain that it was not detected in normal MRI`s for years!So...there is hope, but with your other damage from the
stroke and car accident ..... would you really be prepared to risk further weakness on top of you already weak side? The way the brain works is that if your left side of the brain is affected then "things" happen to the right side. So...if your left side is already weak from the stroke...does not mean that your seizures are coming from the right side so if they operated you COULD be left with weakness on both sides. It does not always happen...but are you prepared to take that risk...and it is always a risk. I had a seizure this week (cry!) first "proper" one for 18 months...gutted!
I know its hard...... I was having seizures every day so I know how hard,draining and demoralising it can be..... but however bad the docs bedside manner may be... ultimately they will have your best interests at heart. I hope you get the outcome you are looking for x

[Deleted User]

sarahlouise210 wrote: »

I had a seizure this week (cry!) first "proper" one for 18 months...gutted!
I know its hard...... I was having seizures every day so I know how hard,draining and demoralising it can be..... but however bad the docs bedside manner may be... ultimately they will have your best interests at heart. I hope you get the outcome you are looking for x

I hope you're ok and coping with this? Despite having epilepsy and seizures since I was a small child I didnt have any for about 2 years after surgery. When I did have one I was in shock, as if it was the first I'd ever had! Hopefully fiddling with the meds will stop this happening again with you.

Indie_Kid

http://news.bbc.co.uk/1/hi/health/8573127.stm

skintdragon

Hi there,

Neurosurgey is always the last option for the treatment of epilepsy; the problem with surgical intervention is that there is no way of proving whether it will rid of the seizures. In fact, it is not uncommon for people undergoing any form of neurosurgery to develop seizures, besides other forms of side- effects, such as limb weaknesses. Treatment can range from conservative (drugs) through to the more extensive lobectomy (taking part of the brain out).

There are various options for epilepsy, but that is very dependant on the frequency/ type of seizures (grand mal, localised, etc). Have you always had epilepsy, or was it secondary to the other trauma (stroke, brain trauma)?

Did the surgeon mention anything along the lines of a vagus nerve stimulator, or whether or not you'd be a suitable candidate?

(Sorry for all the questions but I worked in Neuro for many years and am interested in the clinical approach to this!!)

Good luck!