My wife just received her 2'nd left
temporal lobe surgery last year...
Heres the scoop in point form.
1. She had her first surgery in montreal
8 years ago, after the surgery her
seizures were more frequent but less
severe. They thought that it was because
it was so close to the memory that they
only took out a little of the brain.
As a result of this when ever she would
read she would go into a seizure. Reading
was her life. She gave away all her
books.
2. We were fortunate enough to get her to
go in for another surgery last year I
believe it was.
3. They tested her in the special seizure
room, (for some reasion when they test her
there the seizures won't happen, i've herd
this happens from time to time) where they
hook you up, unfortunatly she was wired
uncomfertable to a bed and 10 feet away to
a bathroom. They would not unhook her for
any reasion. After 4 or 5 days I think it
was she snapped and couldn't take being
strapped to that bed.
Also while she was in there they took her
cold turkey off all her medication
(including) her antidepressents durning
the tests, antidepressents she had been on
for literally for years, I found out about
this and mentioned that this could give a
false seizure, one of the sideffects from
coming off antidepressents is seizures,
and not the ones she's having.
Anyhow after the 4th or 5th day they
picked up a mild seizure durning the
night, and let her return home
4. The usual mri was done - a month or 2
before the surgery
5. After the surgery she was in extram
agony afer the opperation, I felt deeply
something was wrong but the surgen
reassured us everything was ok and she was
healing quite nicely, the surgen removed
the football helment bandage and said she
was good to go home after 4-5 days, she
pointed out to him about the weird bump on
her head and he said it was swelling.
6. I take her home and shes fine!!!! She
has head pain but no seizures!!! She's
able to sleep!! She's eveing thinking
that some day she can drive a car, and for
the first time in years theres hope. Alls
good for about a 3-4 days shes fine, but
there is this strange bump sticking out of
her head, I thought it was just swealling.
7. She begins complaing of having
migrains and feeling dizzy all the time,
we call the specialist office and leave
message, they book an appointment for
about 3 months.
8. Five days home at 2 am she goes to the
bathroom, she collaspes (passes out) and
nails her head in the bathtub, I thought
she was dead, scared the hell out of me.
Hit her head right were they performed the
opperation, with her full weight.
9. I get on the phone and flip out, at
least I think I did, once again I can't
remember, i'm on the verge of a breakdown
I swear to god, at least i'm gong to be
seing some one about my condition, any
how, we get her in in a week to see the
sergon.
10. They put the plate in wrong!! Her
seizures are now back and as strong as
ever. So they book another surgery to put
in another plate, I think that was only or
a month or 2. - but don't quote me on
time right now, i'm not well either - a
nother mri before the opperation, they
send us home because the surgen didn't
tell them it was a plastic plate they put
in, they screw up on that, they seemed to
screw up on just about everything, we go
back a week later for the mri
11. 3 months after the second surgery she
sees the nurologist
12. We told him everything, back then I
had more strength and a better memory and
described to him everything that happened.
He tried her on a new sample medication,
it doesn't work, another nurelogist, an
old wise doctor whom I fully respect and
trust puts her on another new type, that
doesnt work. Now even her tegrotal and
topamax dont seem do do anything.
13. They blame the antidepressents she's
been on for years, and wean her off them -
that doesnt work
14. They booked a memory type of test for
a year after the first surgery, which we
just went to last week, the right side of
her brain is now also effected, we were
told perhaps because of the seizure
activity. The woman suggested we get a
e.E.G. - we book the appointment
i) since then she's gotten worse and
worse.
Ii) her vision right superior both eyes I
believe are going.
Iii) seizures have increased, and keep
increasing - the frequency, duration and
strength have increased
i'm afraid she's just going to slip in one
one day and not come out.
16. Were booked for the e.E.G. In for
september it's now june, he's on vacation,
to see the nurologist - then we get to
book an appointment for an e.E.G., if
she's not dead by then.
18. Needless to say i'm very sad on how
everything wen't and I don't expect her to
ever, ever be the same, a part of her has
died, a part of her chrildren has died and
a part of myself has died. And right now
at this moment in time, i'm not pointing
the finger of blame at anyone, at this
moment in time that is, if the plate was
put in wrong and it caused the problems,
at least let me know if that was the
culprut, and at least let us know what to
expect (prognosis)...
Not knowing is harder than anything,
because you can't begin to accept what you
can't expect.
My wife blames herself for going through
with the procedure.
I just want insight from someone whos
going through the same difficulties.
Even if it's bad I don't care, I won't
freak her out with anything I hear that's
negative, or giver her false hope from
anything thats positive, we'll let the
doctors do that.
We've herd nothing but positive about this
surgery! No one ever told me the seziars
would get worse.
