It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Epilepsy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-08-2004, 01:27 PM   #1
Senior Veteran
 
Join Date: Feb 2004
Posts: 700
tkdmom96 HB User
<<<< DianaF >>> testing/surgery

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.
__________________
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 12-09-2004, 11:00 AM   #2
Member
 
Join Date: Oct 2004
Posts: 53
DianaF HB User
Re: <<<< DianaF >>> testing/surgery

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?

 
Sponsors Lightbulb
   
Old 12-09-2004, 02:15 PM   #3
Senior Veteran
 
Join Date: Feb 2004
Posts: 700
tkdmom96 HB User
Re: <<<< DianaF >>> testing/surgery

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
__________________
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 12-10-2004, 11:44 AM   #4
Member
 
Join Date: Oct 2004
Posts: 53
DianaF HB User
Re: <<<< DianaF >>> testing/surgery

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.

 
Old 12-12-2004, 03:49 PM   #5
Senior Veteran
 
Join Date: Feb 2004
Posts: 700
tkdmom96 HB User
Re: <<<< DianaF >>> testing/surgery

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
__________________
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 12-12-2004, 03:51 PM   #6
Senior Veteran
 
Join Date: Feb 2004
Posts: 700
tkdmom96 HB User
Re: <<<< DianaF >>> testing/surgery

p.s. I would say if you don't hear by Wednesday, place another call and tell them you have been waiting long enough...you would like to know/need to know for peace of mind...
__________________
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 12-12-2004, 08:48 PM   #7
Member
 
Join Date: Oct 2004
Posts: 53
DianaF HB User
Re: <<<< DianaF >>> testing/surgery

Hi again,

Thank you for responding. Yes, I did have neuropsych testing done. Right now I cannot remember what was determined exactly, but I do know that it was what they expected with left temporal seizures.

What is subdural strip surgery?

 
Old 12-13-2004, 10:18 AM   #8
Senior Veteran
 
Join Date: Feb 2004
Posts: 700
tkdmom96 HB User
Re: <<<< DianaF >>> testing/surgery

Hi Diana,

On Katie's VEEG they saw some activity on the right side as well. The first time the right side had been mentioned. A few of the doctors found it significant enough that they would not vote in favor of doing a straight temporal lobectomy, without further testing. All of the other tests were in favor and pointed to MTS, but the right activity was a question mark.

They were not able to determine for sure if the right side activity was something that started on its own or if it came along for the ride, after the left side started. Because the EEG has to read through skin, skull etc. they couldn't conclusively agree. SO, it was recommended that Katie have subdural strip placement surgery and another VEEG study done.

On April 5th Katie had 2 holes the side of dimes drilled in each temporal lobe, (right and left) and electrodes were placed in between the layers of both temporal lobes. It was stapled closed and she was removed from meds and had her seizures in the EMU. After they had enough seizure activity, thank goodness it was less than 48 hours, she went back into surgery to have the strips removed and closed up. She ended up with a "mohawk" haircut from it. Because the strips were within the brain they were able to get a conclusive answer. The seizures focus on the left and cross over to the right...so Katie was a GO for the temporal lobectomy, which she had on June 7th. We needed to wait between surgeries because of the risk of infection. She needed to be completely healed from the strip surgery. Because of the type and way it is done. Many people have their skulls opened, have the electrode grid placed right on the brain, have data collected and go into surgery immediately. That way the brain is only open once and surgery is done. Because we weren't sure if Katie was going to be a good candidate, we had to do it differently, unfortunately. It placed her in a tough place physically, but there was no other way to get a conclusive answer.

We discussed it with her (because she was 16) and she understood and said, "we have to do it then". So the minute we knew it was what she wanted, there was no turning back. Two surgeries within exactly 2 months was a little frightening, but all went extremely well. Both surgeries were much quicker than what they told us and Katie did so well with the healing and hardly any swelling. The strip surgery took 1 hour, start to finish for the placement and less than an hour for the removal and closing. The temporal lobe surgery was scheduled for up to 4 hours and took a total of 2 hours, start to finish. Katie was out of the anesthetic recovery area around the 3 1/2 hour mark, and headed to ICU right after.

She says it is the best thing she ever decided to do. Hopefully all of her outcomes will be met some day...until then, one day at a time. And we are thankful for the surgical board's detailed analysis of Katie's case. We had a few ups and downs, where we weren't sure if the surgery would take place, but in the end the decision was based on VERY SOLID info.

Vicki
__________________
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Checking in <> deviphish Back Problems 3 10-09-2009 06:25 AM
Strange symtoms/diagnosis, looking for suggestions, someone must have an answer >.< Una Kelly General Health 8 09-23-2009 02:09 PM
Starting zoloft again-but side effects this time<?> KArast Anxiety 0 08-11-2009 11:01 AM
COMPLICATED < YOU WILL UNDERSTAND (QUESTION) PLEASE ANSWER> MAD MAZ Thyroid Disorders 14 02-17-2006 05:01 AM
>>>Thinking of foggiediva today<<< tkdmom96 Epilepsy 6 01-13-2006 08:39 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



030free (19), 92261 (11), Positive Cynic (9), Travis from MN (6), Nicole K (6), heyloe (5), cardshark (4), neurowreck (3), dogmom (2), webartethan (2)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (857), janewhite1 (823), Titchou (773), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 06:10 PM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!