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DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY
Fri, 11/13/2009 - 16:19My 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,
Vicki
Comments
Re: DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY
Submitted by vic on Fri, 2009-11-13 - 19:06
Thank you Carly,
I'll mention the PET scan...this is a good idea! She did have one before the surgery too...
I hope your headaches get better soon!
Thanks again,
Vicki
Thank you Carly,
I'll mention the PET scan...this is a good idea! She did have one before the surgery too...
I hope your headaches get better soon!
Thanks again,
Vicki
Re: DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY
Submitted by sydelle on Sat, 2009-11-28 - 17:33
It's been over 9 yrs. (Aug,2000) since I had the Left Temporal Lobectomy and I've had "No Headaches" but the left side where I had the surgery was numb for almost a year. Before having the surgery I was taking 5 different types of medications a day which added up 30 pills a day after having the VNS ( Apr,1999) which did not help in controlling the seizuresI was having. Until last June(2008) I was "Seizure Free". Since then I've had 14-16 seizures but I still consider myself "Seizure Free". Also Now I'm only taking (5-6) pills a day. I'm sorry for the headaches that your daughter is having. I could image how hard it is in having to deal with the pain.
It's been over 9 yrs. (Aug,2000) since I had the Left Temporal Lobectomy and I've had "No Headaches" but the left side where I had the surgery was numb for almost a year. Before having the surgery I was taking 5 different types of medications a day which added up 30 pills a day after having the VNS ( Apr,1999) which did not help in controlling the seizuresI was having. Until last June(2008) I was "Seizure Free". Since then I've had 14-16 seizures but I still consider myself "Seizure Free". Also Now I'm only taking (5-6) pills a day. I'm sorry for the headaches that your daughter is having. I could image how hard it is in having to deal with the pain.
Re: DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY
Submitted by Carlyme on Fri, 2009-11-13 - 18:56
Dear Vicki...
I feel for your daughter very much.... that sounds very terriblel..
I have left temporal lobe epilepsy and I get quite severe head pain everyday (without having an operation)
and I need to see my neurologist again to discuss this.. BUT maybe your daughter should have another P.E.T scan? if she hasnt had one already before surgery, to check eveything... SInce PET scans are the most accurate of scans they should be able to show all parts of the brain... as that was the only was they could find out I had epilepsy... nothing came up on an MRI....
Just a thought..........hope it helped....
sorry to hear about your daughters pain....
I hope your neurologist takes action & further investigation on the matter......
take care....
Carly :o)
Dear Vicki...
I feel for your daughter very much.... that sounds very terriblel..
I have left temporal lobe epilepsy and I get quite severe head pain everyday (without having an operation)
and I need to see my neurologist again to discuss this.. BUT maybe your daughter should have another P.E.T scan? if she hasnt had one already before surgery, to check eveything... SInce PET scans are the most accurate of scans they should be able to show all parts of the brain... as that was the only was they could find out I had epilepsy... nothing came up on an MRI....
Just a thought..........hope it helped....
sorry to hear about your daughters pain....
I hope your neurologist takes action & further investigation on the matter......
take care....
Carly :o)