I had a seizure and had a brain tumor, but the doctor wont let me...
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UPDATED: Fri, 07/03/2009 - 8:11am
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Godiva...
Surgery - How Long Is The Process?
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Hi,
I have been stopping by and reading lots on surgery - I've also been looking at www.epilepsy.ca and London Science Center http://www.uwo.ca/cns/pages/programs/epilepsy.htm - where I'd get referred.
Nothing really tells me about timelines. I'm curious to know - from the time you check into the hospital for the tests, how long does it tak to get surgery. I think I'd have a hard time getting the tests done, then having to wait another 6+ mths for a surgeon to take over. Does everything happen all at once? Test series a, Test series b, then from there - once they have the results the surgery happens right then. Or do they send you home to freak out that surgery has to happen in 6 mths to a year after the tests are done to know you are a candidate?
I'm leaning towards getting a referral for the tests, but I'd want everything done all at once. Tests, confirmed I was a candidate, then really quickly the surgery, so I couldn't back out or have to deal with the stress of ummm..oh my god this is what they are going to do to me in about "x" mths, what the heck.
Anyone have any ideas on timelines?
Thanks!
Erin / GodivaGirl
By Godiva... at Fri, 07/03/2009 - 8:11am | 83 views | 6 comments
Topic: Surgery Issues
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Recent Comments on this Discussion
in August of 1996, I was told I was a candidate for the surgery. I had it done june 26th 1997. I went into the hospital on the 19th. Had to go through some test before the surgery. It was about 7 hours in surgery. I recovered very quickly, & went home on the 2nd of july. I had it done the lower temple right side. I guess you have to wait either for when the surgon can do it, or wait for a bed at the hospital.
I have had 2 brain surgeries. In the US the process was 6 month because the doctors were unfamilar w/ my case. The did a PET, CAT, Psych testing, EEG monitoring. That was in 1976. I stayed in the hospital for a week.
The 2nd surgery they did a EEG monitoring and the next month I had surgery. I was in the hospital 3 days but I was by myself and should of had someone w/ me. I had 3 seizures when I was by myself. That was 1991.
In 2009 they discovered the abnormality via the MRI and said the other surgeries did not remove the abnormality. They told me the latest MRI slice it thinner and they discovered my abnormality and the cause of my seizure disorder. They could remove it. It is pretty interesting that knew inventions are discovered and help patients and surgeons.
The first surgery they felt would remedy my seizures but now they discovered my cause and now it is 2009, be patient. Hopefully things will go smoothly and swiftly for you and it will be done quickly!
Take care, I ended up being a Neurodiagnostic Technician helping others w/ Seizure Disorders!
I wish you the best!
I had surgery for right temporal lobe epilepsy in August 1998.
I entered the hospital in late June for EEG and video monitoring. I also had an MRI while at the hospital, although I had MRIs before.
I was told I was a candidate for surgery but was sent home until a bed and a surgeon were available. I entered the hospital a few days before August 12, 1998 for testing with the neuropsychologist. Two days before surgery I had the WADA test, which I found to be extremely painful.
There was approximately a two month lapse between I first entered the hospital and the date of surgery.
I was shocked when the hospital sent me home in just 2 days. My operation was 7 and a half hours and I thought I should have stayed longer. Luckily, someone was home with me because I had to be rushed to a hospital on my first night home.
Has anyone else been sent home so quickly? Did you find the WADA test painful?
P.S. I was seizure free for a few years but my seizures have begun again. My daily dosage of anitconvulsants is quite high (2800 mgs.). I would like to know if other surgery patients have experienced relapses after many years.
Erin,
I would expect timelines vary from area to area and even doctor to doctor. It was early 2000 when I first saw the epi that guided me to my surgery in Jan '03. We saw each other every 6 months and by the time we worked our way through an MRI, long-term EEG monitoring and neuropsych testing it was May '02. Most of that wait - over a year - was for an EEG bed.
So specifically for me, May was when the testing finished and I was told "we can do it". I saw the surgeon over the summer and my epi again in Nov when I said "do it" any time after the new year ($$ reasons). The surgery happened on Jan 17.
Honestly though, you need to ask *your* doctor about timelines in your facility as they're more a function of "the system" than anything else.
If you want to read more about my surgery, go here:
http://users.eastlink.ca/~kehoe/
Kevin
Hi Kevin,
Ya, it looks like you do have a really cool site & went thru quite a lot of what my neurologist in Toronto, ON wants to send me thru to by redirecting things to London, ON (Canada). I'm hoping b4 next July I'll be organized enough to move out on my own & get my life back.
I'm 35, and living with my mom & dad right now until financially things are better - my ex & I really screwed up, and until my life isn't in the right place to move out yet, but it will be then.
I see my neuro. in Toronto to decide on this, and while it makes sense, I guess I'll ask some other questions instead.
How tough was the recovery really? Can people tough it out living alone? I'm hoping by next summer to be in the right place to get my life back, but that's right around when "phase 1" would happen.
I'm really considering doing this, but in the same sense I want a new relationship, a better job and other things out of life.
How do I go thru with it and not feel like putting life on hold? Most of my friends get this - but there are so many areas of life where it could be tough to not let "delays" impact it - like a better job, moving out, and things like that.
Kinda why timelines will sorta be a deal breaker...and well, if it's possible to go thru the experience on your own.
Any insight, anyone?
~GG
Hey Godiva,
I honestly know what you mean by "putting your life on hold"... but to be honest - My life with epilesy is a life half lived anyway.... it all depends on your seizures and how they impact your life.
I have Simplex Partial seizures with secondary generalisation - with around 5-8 fits a day. After the intial diagnoses test throught the years, I went through all the test etc again to see if I am a surgery candidate in November last year. PET, SPECT, MRI, 3D MRI, Video EEG etc etc - they managed to do it all for me in 2 weeks in Melbourne, Australia - but it took me almost 7 months to get a spot there. Then after my Video EEG they agreed to do the ICE process as they could not pin point my focus 100%, but had a generally good idea of where it is. If they can pin-point it with the internal grids - they will do my actual surgery at the same time they remove the grids...
I finally found out last Friday that my surgery date for this is November this year - so 12 months... Initially I was really upset, because it was Uni holidays and I had a 3 month break - perfect for the recovery period. I could go back to Uni in Feb, finish my degree and start work ASAP afterwards. But it was not to be... I had to wait "around 6 months" for the surgery... SO in the mean time I decided to keep working towards my degree, then I got engaged in January, finished my degree in July and got married in August - and had a month to travel Europe with my husband because I had no work commitments. And now I got a 3 month intern ship which works out perfectly because I finish the week before my surgery...
Life does not always give us the timeline we want - but trust me, things somehow work out for the best. Dont put your life "on hold"- I still went ahead and planned my wedding and honeymoon despite being on the waiting list, and life worked itself around it. Keep your chin up, plan roughly but dont deny yourself the oppertunity of surgery because it doesnt fit in with the "timeline" you have mind.
Hope it helps xxxx