<<<< DianaF >>> testing/surgery - Epilepsy Message Board

tkdmom96 · 12-08-2004, 02:27 PM

Hi Diana,

I've been wondering how you've been and how things have been going!
Please fill me in on the tests you have had done since I saw one of your last posts. The last I read was the WADA test was done and I read your post. Did they give you any thoughts from that yet?

Did you have a SPECT or PET scan done?

Let me know what you would like to know...I'll check back later tonight.

We'll work off of this post so we know where to look for our responses. Talk to you soon...

Vicki

p.s. Katie has been seizure free 6 months today!

And she is off of her Keppra and on Lamictal monotherapy. First time in over 4 years.

DianaF · 12-09-2004, 12:00 PM

Hello!

I have not heard anthing since the WADA test. In face, I am calling my dr's office today to see what the heck is going on. It has been a month already. Yes, I have had a PET scan.

What did your daughter's WADA test show?

tkdmom96 · 12-09-2004, 03:15 PM

Hi Diana,

Katie's WADA showed that her language and memory (normally on the left) moved to the right side, after starting seizures so young. She started at 9 months and the brain compensated. She had trouble speaking and with her memory when the right side was put to sleep. When the left was put to sleep she was fine. The only thing was that she remembered 7 of 10 objects with the left asleep and 6 of 10 objects with the right asleep.

Basically this showed Katie had bilateral memory, stronger orientation on the right. However, they like to see a bigger differential than 1 object. Ideally they would like to have seen 7 on when the left asleep and 3 or 4 with the right asleep. That would indicate that her memory was "much" stronger on the right than the left, rather than almost even. After all of the testing and the neuropsych exam we had to believe that Katie's memory would be ok if we did surgery. Worst case was that she would need help with strengthening it after surgery.

If we didn't do surgery, Katie would continue to seize and she would suffer cognitively and the seizures could also progress, cross over and affect the right hippocampus...which would leave her with severe memory issues, since her left hippocampus was already in trouble. She was diagnosed with MTS, Mesial Temporal Sclerosis. We got the pathology report in October, 4 months after her surgery, and it was conclusive for MTS. So we definately made the right decision.

Katie has been showing some signs of short term memory issues since surgery. Her long term memory is totally fine. In school (she is a sophomore) she is having trouble with Chemistry and Trig. It seems that she needs repitition to make things sink in. She also tried out for the JV basketball team (and made it) but the coach mentioned that she had trouble remembering what skill they would be working on or what she needed to do at the time. They have been working with her and have been very patient. She always asks for clarification, even in class.

What did your PET scan show? Any special area of low uptake? We they able to see anything significant? Katie's was quite apparent. That was another test that made our Epi very excited for Katie's prospects. Blues in the area of the MTS.

Any other questions, don't hesitate to ask. Katie's info went to review 3 times before it was finalized. She had to have subdural strip surgery before going forward with the lobectomy. That was the final clincher. They were able to pinpoint the seizure activity exactly. It went to the final review after that.

Vicki

DianaF · 12-10-2004, 12:44 PM

Thank you for responding.

I spoke with my doctor's nurse today. My WADA results are on her desk. Now I just have to wait for the phone call.

My PET scan was normal as are my MRI's. My seizures didn't start until I was 40. I am 44 now.

I know I was able to remember some things when my "right side" was put to sleep, but I was unable to talk.

When my "left side" was put to sleep I remembered more things and was able to talk.

My seizures are coming from the left temporal lobe - that they know for sure.

I hope my doctor calls me soon with the results - the waiting is so hard.

I have trouble with memory already - short term. What makes it hard is that I teach college and sometimes have a hard time remembering what I am lecturing on.

I will keep you posted, and thank you so much for communicating with me.

tkdmom96 · 12-12-2004, 04:49 PM

Hi Diana,

So it sounds as though your speech is on the right, which would be good, and I guess the memory would be the main concern. It also sounds as though you could have bilateral memory, with a stronger orientation on the left. Of course I am NOT a doctor, I'm only going by what we learned through Katie's results and our Epi/Neuropsych consultations.

Did you have a neuropsych exam done? Did that point to anything in particular? Katie had certain indicators that added to the MTS diagnosis, which were left temporal seizures.

I will be waiting to hear what they have to say. Please make sure it goes to a board review, so a number of people have to look things over to decide on the best options. Katie's first review (Sept. 2003) seemed like a slam dunk, until 3 doctors questioned something. There were something like 15 or 17 in on the reviews. (total of 3) Those 3 doctors raised a question with Katie's original VEEG in the EMU. They were not comfortable with the right side activity they saw on the EEG. They couldn't tell if the activity was something that followed AFTER the start on the left, or if the right had it's own focus. So the surgery that was scheduled for Dec. 15, 2003 was cancelled. In Decemeber it came up to review again and the recommendation for subdural strip surgery was made. That was scheduled for April 5th, 2004. After the results of that surgery and stay in the EMU, it was conclusive, but still went to review (#3). Katie was finally scheduled for June 7th, 2004...for the left temporal lobectomy.

We started the journey on May 27th, 2003 (first office visit with our Epi) and concluded on June 7th, 2004 with the surgery. Alot of waiting, but they really did a great job at making sure the right decision was being made.

My fingers will be crossed, if this is what you want to do!

Vicki