Guidance Needed - Brain Surgery

[Guest guest]

Hello all,

Well, after 4 doctors, 2 neurosurgeons and a trip to Pittsburgh we have a

surgery proposed to end my daughter, Mysha's seizures.  But, now I am scared. 

First a little background:  Mysha is now 13, and VERY high functioning.  She has

limited use of her right hand, and walks with a limp.  Those are the only signs

of her PMG.  In fact, she was diagnosed as having an intrauterine stroke until

age 10 when a higher resolution MRI was performed and the PMG was found.  There

were no signs of a stroke.  Mysha has never had feeding issues, and never needed

speech therapy.  There were delays with speech, but they resolved by age 2.  At

18 months she had her first seizure, but by age 3 we took her off meds.  She was

okay until at age 5 she had a clinical seizure.  The EEG showed she was seizing

every 6 seconds - and this explained her learning issues, as well as behavior

difficulties.  At age 8 she went into status and Keppra was added. We were good

for a LONG time with only small nocturnal seizures.

Then, at age 10, she was having a conversation with me (Jan, 2008) when she

suddenly stopped speaking, looked scared, and had a grand mal seizures lasting

about 15 minutes.  From that moment on we have lived with almost constant

seizures.  We got them under control (kind of), and began to be evaluated for

brain resection.  They were just going to go in and remove a small area of her

brain where the seizure started.  Bam.  Seizure free.  Testing didn't go well,

and they never caught a clinical seizure on the video EEG.

So, off we go about our lives.  They keep bumping the Keppra, etc.  Then in Dec

of 2009 her behavior spirals out of control.  Extreme behavior issues.  I

insisted on an EEG - just ot rule stuff out.  It turned out that she was in

" sub-clinical status " .  Status without convulsions.  That was a 3 day admit. 

They tried 3 drugs, and a brand new one worked (Vimpat).  It completely cleared

her EEG from ALL seizure activity.  Yay!  Then 2 weeks after, still on the drug,

she began to have loss of concentration and behavior issues.  It all went

downhilll quickly.  I knew what the follow up EEG would say.  She was back in

" sub-clinical status " .

So, to make a long story a bit longer, I'll try to be fast. Thank you for

reading this far!

Right now she is on 3 drugs, birth control (which is NOT working to control her

periods), and they are upping them.  It is not working.  She has convulsive

seizures about once a week, but the ebb and flow of the sub clinical are clear.

She spent 20 minutes argueing with me in a park about whether it was 11:34 or

11:36 when she asked what time it was.  She gets obsessive about little things: 

i.e.  " Mom, what's for dinner?  What time is dinner going to be? "   5 minutes

later " Mom.  What time is dinner?  What are we having?  Why do I have to keep

asking you?  Mom.  Answer me. "   And, I am answering her.  Every time.  This can

happen 15 times in a row over a 2 hour period. 

So.  Where does all this leave us?  With the doctors now saying that because the

left hemisphere is COVERED in PMG and the deeper regions are involved the ONLY

procedure that might help is a Left Hemispherectomy.  Yes.  They want to

disconnect the left side of her brain.  It is all a blur - except the part where

the doctor said " A lot of children learn to walk again. " . 

I'm so lost.  I'm so scared.  And, I'm so confused.  Why do I have to make this

choice?  Which option is going to destroy her LESS? 

I'm sorry for such a long email.  But I am sitting here, unable to sleep, and

desperatly lost in my own rambling thoughts.