My daughter had a left temporal lobectomy, following placement and
removal of subdural grids and depth electrodes, January 27th 2009. We
went about 5 months with NO SEIZURES- YAY! Unfortunately, at right
about 6 months, she began having very severe head pain on her left
side- where it's all bumpy from the surgery. At the same time she began
having simple partial seizures again. She now has regular/ approx 3 per
week auras/simple partial seizures, with complex partial occurring less
often. This is definitely better that before surgery(10 or more a
day)! Her history is such that she unfortunately has secondarily
generalized seizures that turn into status epilepticus. So far there
has been no generalized seizures, and I hope we don't go there again.
The left sided head pain lasts ALL WAKING HOURS!!! It is only gone when she is
asleep (as far as we know- at least she can sleep). So, 16 hours per day, every day!? And, it STABS for 1-5 minutes
at a time intermittently throughout the day! We've tried Indomethicin, Prednasone, Melatonin, Propanapol,
all of which have not helped. (and of course the tylenol, ibuprofin,
alleve, etc...) We are trying something new today. The only thing that
helps is pain meds to help get her to sleep at night. This pain is
SEVERE and debillitating.
Is there anyone else who has had this type of head pain?
We had an MRI on a 1.5 Tesla machine, which did not show anything. We
have added Lyrica to our Keppra and Lamictal, and are still hoping to
figure this out.
Thank you for any help,