6 weeks post op. More complications

[timelordess]

Well.....was rushed back into hospital  Sat 24 April, as when I woke up I couldn't deal with light, head pain was truly unbearable. Couldn't even lift my head of bed to drink to take pain killers....but that's not why I went to hospital.  My husband walked into the bedroom to see if I was ok and wanted a coffee, and I started fitting.  He freaked, obviously, so called an ambulance. I then started having seizures every 2 hours, each lasting about 20 mins (tonic-clonic seizures) before the unconcious state kicked in.  I was transferred to my NS department, and given pretty much every test under the sun, as I have never had a seizure in my life. in the last 2 weeks I've had allsorts of things/tests done, and no one has any reason as to why I'm now having seizures. My eeg has come back as I'm epileptic so now on anti-epilepsy meds for life, they seem to be working, no seizures for 4 day's now. The only 'theory' is that when I had my decompression surgery, my brain went back to normal shape and function, and I should have been epileptic since birth, but the squished up chiari brain was covering it. But NS said he can't garauntee that for at least another 6 months, when everything's settled down in my head and they can get a clear CT and MRI.  To say it's a shock to discover I'm epileptic after 29 years is and understatement, but I'm sure I'll get used to it.
So it now works out, I've spent almost 6 week's in hospital with loads of CSF leaks, Lumbar drains and now seizures.  Woop me lol.  I'm home now, and taking it easy till my med's are up to full dose and working.
Love Em'z xxx

[timelordess]

Thank you all...:)  I'm ok, and dealing.  Whilst my med's are working, and seizure's are not here, I'm a happy girlie ! From what I'm led to believe, it didn't make the seizure's better, just hid them, but untill they can get a clear scan, who know's.  I've decided not to let it bother me.  Just to do what I half to do to keep seizure's at bay.

Love Emma xoxo    

[*Stormy*]

I am so sorry that this just keeps getting worse for you!!! I don't even know what to say other than you are a truly strong person and I know you will get through this!! That is weird about the epileptic issue...who knew Chiari could actually make things better?? I hope and pray that this medication keeps the seizures away and that you are able to go back to a somewhat normal life!! Take care and make sure you rest XX

Carolyn

[Devin215]

Hello,
I am sorry to hear you had so many complications. Like some of us here I also had complications and that is one of the risks we take when we decide to have the surgery. My brain swelled up and I had a fluid build up which they thought was left over blood from the surgery site. I had a monster headache that day I was rushed to the hospital and my sister found me in the bathroom on the floor I couldnt even stand to put my pajammas on and one side of my body went numb. I couldnt breath and my sister was talking to me which I could understand her and I knew what I wanted to say but it wasnt coming out right and I started talking about hamburgers.... It was so scary cus I was thinking to myself that I knew what was happeneing and I kept thinking something is wrong but then I lost conciousness although I could hear the ER doctors talking to me. All I can say is I know how scary it is and just RELAX and DONT push yourself as you heal. I hope this is only a Temporary situation for you and that the doctors figure everything out. I hope for you this is the last Major bump in your journey and you get to benefit for the decision you made in relief or improvement of your symptoms. Let me know if you have any questions. Feel better!!

[selmaS]

HI Em...so sorry u went thru so much and mayb it is a temp thing until u r done healing??
I pray that is the case....and  now that it is all behind u that u continue to reap the benefits.

I have heard others that had seizures, but usually b4 surgery...once or twice heard of someone having them afterward, but never heard it liked to epilepsy......

U had so many setbacks...CSF leaks ect....mayb it was all too much and like I said, I pray it is a temp situation for u.

Glad to hear u r home : )

"selma"

[northernstarmn]

WOW I am sorry you had to go through all of this and hopefully they can give you some clear  answers really soon....good luck and happy healing!!...