Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
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 Thu, 2011-01-06 - 11:57
I am so sorry to hear about your son's head pain, but great news that there are no seizures! My daughter still suffers from the daily stabbing head pain. We have now gone through many different meds, none of which helped at all. We have been going to accupuncture for more that a year, which does relieve the pain during the procedure & for about a couple hours after, so this is something! I will ask about the lidocaine ointment...thank you! Also, unfortunately my daughter's seizures have increased to daily 6-10 simple partial & she had her first "convulsive/grand mal" or as we call them, secondarily generalized seizure, a few months ago. She's taking Keppra and Lamictal & we have a "rescue" medication as well. She has also recently been diagnosed with atypical Schuermann's Disease, probably caused by taking AED"s for so many years (since she was 20 months old), and is in quite a bit of back pain from a herniated disk in her lumbar area. We're working on getting an MRI of her neck area, as we've heard it's possible that there may be nerve compression there that could be causing her head pain - have you heard about this? Any advice is greatly appreciated, as this head pain has become more and more debilitating and severe.
I hope your son stays seizure free & you find something that works for head pain.
I am so sorry to hear about your son's head pain, but great news that there are no seizures! My daughter still suffers from the daily stabbing head pain. We have now gone through many different meds, none of which helped at all. We have been going to accupuncture for more that a year, which does relieve the pain during the procedure & for about a couple hours after, so this is something! I will ask about the lidocaine ointment...thank you! Also, unfortunately my daughter's seizures have increased to daily 6-10 simple partial & she had her first "convulsive/grand mal" or as we call them, secondarily generalized seizure, a few months ago. She's taking Keppra and Lamictal & we have a "rescue" medication as well. She has also recently been diagnosed with atypical Schuermann's Disease, probably caused by taking AED"s for so many years (since she was 20 months old), and is in quite a bit of back pain from a herniated disk in her lumbar area. We're working on getting an MRI of her neck area, as we've heard it's possible that there may be nerve compression there that could be causing her head pain - have you heard about this? Any advice is greatly appreciated, as this head pain has become more and more debilitating and severe.
I hope your son stays seizure free & you find something that works for head pain.
Re: DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY
Submitted by tonialpha on Thu, 2011-01-06 - 17:43
I have had 3 brain surgeries and the first was just like this and I was in the ER and hospital more. I had terrific headaches. The Neurosurgeon I saw noted shattered bone from the first surgery. He told me it was the proceedure that was done. They noted more abnormality going on in the EEG and I needed to be more control.
They used a different anesthetic and cleaned the scared area and shattered bone up. They removed more abnormality. Seizures lessoned and the headaches were a lot better.
I still had seizures but not the severity.
Recently via a MRI they discovered the cause of my seizures was a birth defect.
I wish you the best!
I have had 3 brain surgeries and the first was just like this and I was in the ER and hospital more. I had terrific headaches. The Neurosurgeon I saw noted shattered bone from the first surgery. He told me it was the proceedure that was done. They noted more abnormality going on in the EEG and I needed to be more control.
They used a different anesthetic and cleaned the scared area and shattered bone up. They removed more abnormality. Seizures lessoned and the headaches were a lot better.
I still had seizures but not the severity.
Recently via a MRI they discovered the cause of my seizures was a birth defect.
I wish you the best!
Re: DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY
Submitted by mama3 on Thu, 2011-01-06 - 11:42
I just saw this. My son had the same surgery in May of 2007. In November 2007, he began having severe head pain, also. He still has it - now 3 years later. We have been to several neurosurgeons, Mayo Clinic, tried TMJ treatment, chiropractors and pain management. Nothing has helped. If anyone has any ideas, please let me know. He still takes Tegretol despite the fact he has not had a seizure since surgery (the good part). We have switched neurologists and she has given him lidocaine ointment to help the skin sensitivity. That has helped, some, at least.