Brain Surgery and Epilepsy

Indie_Kid

Quackers wrote: »

She also spent 2 separate weeks in Manchester Childrens hospital. For a whole week she was wired up to EEG & CCTV ( yep, really!). They wanted to see her seizures as they happened and record what was going on inside her head

:eek: I am so glad mine was only for 24 hours. (I don't have epilepsy; but it is genetic in my family and I have had a fit)

Quackers

pics are fine - no-one will mind

I've posted them on here before....hope you are ready....lol...

arriving in intensive care after 10 hour Op:


the swelling began....



few days later the staples came out....



Home at last

Quackers

sandy71 wrote: »

5 Days!! after brain surgery, thats amazing. If I get it done I am planning on milking it for at least a year:rotfl:

A pic would be great, are we allowed thngs like that on here? Don't want the MSE police to come round:D

Your daughter sounds amazing, how old was she when she had it done? It must have been hard for you to make the decisions for her.

I'm now trying to remember how long it was...it may have been a whole week actually :rotfl:

She was just 16 when she had this done

yes...hard...very hard. But so worth it

sandy71

10 hour op:eek: I never thought about how long it would be.

Thank you so much for posting the pictures, it makes it seem more real IYKWIM. And thanks to your daughter as well.

I have to say your daughter is beautiful ,you must be so proud of her. You did a great thing for her and gave her her life back. Thats all I want, my life back:(

sarahlouise210

Thanks Quackers....got your message !!!

I had brain surgery nearly 2 years ago ... it was a long drawn out procedure to get to the stage of having surgery. First you have to deemed suitable for surgery... this is not just if you have many seizures, they need to be the right sort of seizures and they need to be coming from a part of the brain that they can remove. The assessment phase takes at least a year - I had several MRI`s... a week long telemetry...a YEAR of counselling (before and after) to ascertain that you are sure you want the surgery(and also there is an increased risk of suicide after surgery and they need to know that you can "deal with it") I then had to have deep electrode mapping of the brain..this involves them cutting a hole in you skull, placing electrodes on the surface of the brain..and then sowing you up again(this op took 8 hours!!) from this they can see where the seizures start and also find out which parts of the brain are used for different things. The brain surgery itself took another 8 hours and I was awake throughout. I had a seizure during the op which may have been responsible for the problems I had afterwards. When I woke up I was totally paralyzed down my right side and without speech.This was very hard to come to terms with.I could not do anything for myself and spent 2 weeks in intensive care.I went to a rehabilitation hospital for 5 weeks after a hospital stay of 4 weeks..where I learned how to walk and talk and cook etc . I still have weakness on my right side and pain and my right foot turns in ...I had a seizure (generalised) 5 months after the surgery but have only had loss of awareness occasionally since. My right leg still feels like I am walking with a ball and chain and my speech is better but is not as it was (and I so miss that !!) There are regular groups at the hospital where I had my surgery for people who are thinking of having surgery and for those of us who have to tell our stories! Would I do it again....in a heartbeat ! The new found freedom I have away from seizures( that were happening every day) more than counteracts the difficulties I have been left with. My brain surgeon is my hero ! Hope that helps x

Quackers

sarahlouise210 wrote: »

Thanks Quackers....got your message !!!

Yay

Didn't realise your pre op was so much more than Simone's.

But I am confident that they knew all along where her seizures were coming from - the damaged part of her brain

Good to hear you would do it all over again...:)

Thanks for posting xx

sarahlouise210

Forgot to say.... I still have to takes the Meds (this is common) although I now only take Tegretol (1600mg daily) when before I was on a massive cocktail of drugs( Keppra,Clobezam,tegretol,Topirimate and primidone) ... I just want you to know that although the surgery may be successful you will need to continue meds for at least 2 years and possibly for the rest of your life.
There are several facebook groups regarding this and you can get a lot of information and advice there.
I did not have my head shaved - I just had the whole top of my head removed(like a boiled egg!) and popped back on again (stapled) afterwards ! My parting was a bit weird afterwards !! lol

Savvy_Sue

sandy71 wrote: »

5 Days!! after brain surgery, thats amazing. If I get it done I am planning on milking it for at least a year:rotfl:

do NOT stay in hospital any longer than you have to post-surgery, but I'm still milking the "I've had brain surgery!" line 5 years later! :rotfl:

Mine was not for epilepsy, which is why I put Quackers on to your case, but I was 'out' for about 8 hours, and home after 5 days. What they didn't tell me was that there's a particular kind of non-infectious meningitis you can get after they've drilled a hole in your head, so a couple of days after THAT I was up at my GP feeling as if my head was going to explode! Steroids were the answer to that little problem, and I'm still looking for the answer to the weight gain they caused.

sandy71 wrote: »

A pic would be great, are we allowed thngs like that on here? Don't want the MSE police to come round:D

Just don't let sarahlouise post any 'boiled egg' photos, PLEASE! And I am just :eek: at the idea of being awake through it - I've seen it on TV and that's enough for me!

Oh, I had my staples out in hospital, but had to have some stitches out after I got home, but for some reason the hospital sent me a staple remover through the post. I had a couple of offers from DH and (male) friends to do the job for me, but I went to see the nurse at surgery instead. She was most impressed by the surgeon's blanket stitch! :rotfl:

Indie_Kid

Savvy_Sue wrote: »

Oh, I had my staples out in hospital, but had to have some stitches out after I got home, but for some reason the hospital sent me a staple remover through the post.

I'm sure that went down very well at the surgery.

sandy71

sarahlouise210Thanks for your reply, it's good to hear what could go wrong as well, I need to know everything. One thing that worries me is I already have right sided weakness from a stroke when I was 18 so if my left was affected I'm not sure how I would manage.
The electrode thing sounds a bit scary and there is no way I will be staying awake:eek:
I could handle taking one drug, that would be fine it just seems everytime I see my neuro she adds something else.
Do they always take the top off your head:eek: It all sounds a bit scary but i will try anything to stop this.

savvy_sue Thank you for your story as well. Milking it after 5 years, I really like the sound of that:rotfl: I still can't get over being home for 5 days but I won't stay in any longer than I have to, I hate hospital.

The meningitis thing was on my mind. My best friend when I was a teenager has numerous ops on her head and brain and she developed meningitis after on and died:(

I must admit I like a bit of gore, I'm a bit wierd like that:D so the pics wouldn't bother me;)

Sending you the staple remover in the post, that really made me laugh, I'm surprised they didn't send you a mirror to so you could get at the ones round the back:rotfl:

Thank you all for the help and advice.