NeuroTalk Support Groups - Temporal lobe surgery

I read this in another area. Shez was having trouble getting it up, for some reason. It's about his/her temporal lobe surgery.

I had surgery on my left temporal lobe for TLE 3/06. I began with basic MRI, blood tests, and a couple others (I don't recall which) when sent to my epileptologist 11/05. The epi tried to switch my medications 3 times, but had no luck, so I then went onto further tests to determine candidacy for surgery. VEEG and SPECT scans done 2/06. Then had MRI's (one for epi & one for neurosurgeon day before intracraneal monitoring was set up), PET scan, neuropsychological testing, and WADA tests. In 3/06, I went in for intracraneal monitoring to occur - both depth and grid electrodes were placed in and on top of dura matter.

That day is kind of blurry to me. I just recall waking up very early the next morning to seizures. The nurse assigned to me was in the entryway to my room 24/7 - one to one care. As soon as she saw activity on her computer screen, or got a call from the radiographer, she came in to get me to talk & answer Q's. The neurosurgeon and epi came in on morning rounds to tell me that they saw 3 seizures, and that I was an excellent candidate for focus removal. Of course I was going for removal, I wouldn't have had the surgery for nothing, so it seemed like a no-brainer to me. I immediately got my phenobarbital again, to withold further seizure activity.

I woke the next morning very early again to more seizures. Seizures intensified and became longer-lasting as time passed. All along, the nurse asked my name, DOB, where I live, if I'm married, any pets, kids, etc. The list goes on! My husband arrived around 7 a.m. and was my source of comfort. I'd have my spooky deja vu, along with a prickly sensation head to toe & epigastric rising, only to come to several minutes later absolutely exhausted. Seconds later, it hit again. I can't remember the term for that. My memory stops there, but my husband told me that I was having complex partial seizures lasting 20-30 minutes. The nurse didn't know what to do, and called my epi, who was in his morning meeting. He told her to inject me with something (diastat? I don't remember the name). It didn't work for me. I kept having back to back long-lasting c.p.'s. My memory returns several hours after my surgery was completed and I was back in ICU.

Side effects: 1.) Incredibly intense headache which couldn't be controlled. I was in the 33%ile in which pain med's don't relieve the pain. My description is honestly an understatement. 24/7 for months that headache was at times unbearable! 2.) Jaw pain also began very intensely. Yawning is impossible. Eating, talking, etc, very painful for a good 4 months. After 4 months, the jawpain very slowly subsided. It lasted around 6 months. I recall thinking that the pain was gone a few times, and would be sharply reminded of it with yawns. 3.) My left eye became lazy from surgery. I could only open the eye halfway. After a few weeks, I kept my right eye closed at all times to retain muscular strength. The laziness was caused by swelling of the brain and went away 3 months after surgery. 4.) Weight loss. I went below 100 lbs, and that's when I knew I had to stop taking my anti-pain meds. They caused extreme nausea & didn't work anyway, so there was no benefit of taking them. 5.) Mood swings. Began as very intense moods swings, from glorious elation to below the pits depression within minutes. Thank God for those "up" swings! Depression took over about 2 months after my surgery. I had limited ability to control my emotions, family therefore walked on eggshells.

I think that I'm forgetting another side effect or two, but I hope that someone else will bring it up. My seizures were mostly controlled about 6 months after surgery, and I was finally able to wean down to 90 mg of phenobarbital (my norm was & is 180 mg) without seizures. That was an amazing feat in itself! My hope was that I'd be able to stop meds completely, but expected to at least finally switch onto another medication. Medications, emotional effects, and post-surgery is whole story in itself. Hope that this helps you. Best wishes!

Shez

p.s. They shaved 1/8" C-shaped area, so it was totally covered by the rest of my hair. Mayo Clinic in Rochester, Mn.

TY Shez....Lorraine