ADVERTISEMENT
ADVERTISEMENT
vic

DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY

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,

Vicki

Comments

Re: DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY

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)

Re: DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY

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

 

   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

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. 

Re: DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY

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

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!