Surgery

Hi, I'm just after a bit of helpful advice about surgery. My epilepsy has been uncontrollable for the past 7years. The meds seemed to work for 5 years. And ever since, the Neurologists have suggested surgery. I have refused it and asked to keep trying the different meds. That isn't getting me far but I am just so scared of the surgery and what could happen.... anxiety!

I have obviously been reading the Epilepsy Research blogs all the time and see that there are a lot of things happening out there in regards to epilepsy all the time that improve surgery etc and am just biding my time. But things are changing for me in terms of age etc (40 in a fortnight 😭) and I just need some help in pushing down the surgery line in terms of statistics etc.

I dont really know what I'm asking for but could just do with talking to someone who's been down the surgery road.

16 Replies

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  • Hello,

    Let me just start by saying that there are 100 billion cells to the human brain. A neurosurgeon has to go into your brain and with great precision remove all the brain tissue causing your epilepsy.

    Problems can arise when the neurosurgeon goes a wee bit too close. This can obviously cause you more aggressive epilepsy than you had before as well as causing paralysis, strokes and the like etc.

    I know of friends who have had neurosurgery and in some cases have become epilepsy free for two years, and then the epilepsy has returned but in a worse way. Likewise at the time of the neurosurgery things have wrong.

    I am a lot older than you and have had epilepsy since the age of five. My epilepsy is refractory epilepsy, that means it is uncontrollable, and I would rather have epilepsy as I have now rather than take the extremely high risk of neurosurgery that could go seriously wrong.

    I am sure that you would prefer an honest answer to your question as opposed to making out that everything in the garden is lovely.

    I hope and pray that you make the right decision.

    I wish you well.

    Richard

  • Thanks for your honesty UnwelcomeVisitor, I think you've just helped confirm my thoughts against the surgery.

  • Yes I do believe that in life we can all be used in as guineapigs. Whether it be for drugs for whatever illness.

    Years ago there was that horrific drug called Thalidomide and all its disastrous consequences.

    In more recent time another AED given to expectant mothers which caused horrible consequences for their babies was Sodium Valproate.

    Likewise neurosurgeons can be over zealous to remove the epilepsy and results over a five year period have never been published publicly.

    All the very best.

    Richard

    Author of

    Epilepsy the Unwelcome Visitor

    epilepsy-theunwelcomevisito...

  • Hi,

    I had surgery back in March this year. I am also 40. My seizures were complex partials and could be daily.

    I too was terrified and agonised over the decision for many months.

    The surgical process is very slow and there are many pre surgical tests to make sure surgery isn't likely to cause new problems. I would do it all again. It really was no way near as scary as I had imagined.

    I'm more than happy to answer any questions or purely share my experience.

  • Thanks for your reply Lou_Lou, are you seizure free now? Why wasn't it as scary for you?

  • I've been seizure free for 6 months now which is amazing.

    The thought of having a bit of brain removed is frightening but the but they will remove is damaged anyway so you don't need it.

    I wasn't in too much pain and the whole process was no where near as daunting as it might sound. I am such a wuss so believe me, it's actually ok.

  • Thanks for your reply. Quick question, how is your memory now? and do you have any new problems due to the surgery?

    Thanks for your help

  • My memory is fine. I had a 10% risk of word retrieval memory issues but all is fine.

    I have no new problems and am absolutely as I was before surgery.

    I'm more than happy to answer any questions about this as I know that it's such a difficult decision to make. Ask away

  • There's an epilepsy surgery Facebook group who can help by answering any questions.

    See Epilepsy Surgery Friends

  • Oh that's great thanks

  • I agree neurosurgery route I wouldn't go down. I was chatting to a guy at one of my hospital appointments he had, had the surgery he had been clear for years he was newly married his wife had never seen him have a fit as he had been clear of them of them, one year into the marriage he had his first seizure the surgery hadn't worked , obviously he was more worried for his wife than himself as she panicked

  • Cheers Lj08, it's good to hear that other people feel the same way about surgery as I do.

  • Hello, I am on the waiting list for surgery because I finally agreed to give it a go.I have been on 5 different types of medication of which only Lamotrigine has stopped the tonic clonic seizures but are struggling to stop the focal seizures. Sometimes it does get me down because I was not employed to work in a school kitchen but I'm already employed to clean the same school and lock up by myself ? Since I have increased my dosage of levetiracetam up to 100mg twice a day at the end of July the focal seizures have stopped. Now I don't know what to do, hopefully there is a really long waiting list so I can talk it over with one of my neurologists in December. I hope this helps with your decision !

    Cindy

  • I would say - go down brain surgery route - only after they have tried everything possible. And before you allow that to happen - please - make sure that they know exactly where the epilepsy is coming from! Only try brain surgery if it is so clear that they know that it is from one specific area and there is no other possibility! Only after they have done all the testing on your brain and you have had all sorts of seizures when under the EEG and video-telemetry! If there are any doubts at all - then clear those doubts away before you have brain surgery. Because mistakes can be made - and remember that once brain surgery is done - they can't undo it!

  • Monaco1 Please see all my comments that I replied back to horsy The very first response above from me. In very simple terms I strongly believe that neurosurgery is too treacherous even to think of.

    I hope and pray that you make the right decision.

    All the very best.

    Richard

    Author of Epilepsy the Unwelcome Visitor

    epilepsy-theunwelcomevisito...

  • I don't know if you have read about me in my post but here is a short clip. I had a triple bypass at 39 and started having seizures afterwards. I was in and out of work three times 6 months each until they got it under control. They gave me Lamictal and raised it until I was taking 700mg. Forward to this year age 53, had a car accident Aug 8 said the cause was a seizure, 11 days in hospital and totaled car. Went to my neurologist was given Keppra 500mg with what I already had. So far so good, but I would never do surgery even after this. Risk is to high for me, but not everyone is the same and the risk is different for each person. (700mg Lamictal 39 yrs old and 14 YEARS later added 500mg Keppra, 1200mg together.) Gives me 14 more yrs or more? I'm okay with that, at least not surgery!