Hello,

Well, I may be a newbie, but our daughter has had epilepsy since she was 9 months old and is now 15 1/2 years old. She has Partial Complex & Simple Partial (which we term "auras"), is intractible and has been on various monotherapies and adjunct therapies. She is currently on Keppra and Lamictal.

I am looking for a woman, who is a nurse and also has epilepsy. She posted often on the boards over the last year or more. I can't remember her name, but she was very knowlegable! She drove a long distance to her EP doc and I think it was in Georgia. She may also have been from Georgia. She was recommending certain people find an EPILEPTOLOGIST, a neurologist with a fellowship in Epilepsy.

After much frustration over the last 3 years I came to these boards just to read and collect info. We needed to become more aggressive. I came across this woman's posts to certain people and headed off onto the internet to research EPILEPTOLOGISTS. We had none in our area. My husband and I decided it was time to make a move. I came across Johns Hopkins and The Cleveland Clinic in Ohio, over the internet. Katie and I planned to head off to JH when the school year was done (May 2003). Then an amazing thing happened! A friend of ours works at Children's Hospital of WI. God was working here...She told us of a new doc that was starting a Comprehensive EP Clinic at our Children's Hospital! She was coming from New York Presbyterian, Dr. Mary Zupanc (you can find her on the internet)...and there our story REALLY begins...after 15 years...

We got in to see her almost immediately, because of Katie's case. And there our journey began to find out if Katie would be/could be a surgical candidate. The summer of 2003 was spent in and out of scanners (PET & SPECT & MRI), the EP monitoring unit (one week off meds and seizures induced through sleep deprivation and exercise bike riding>of which my husband and I needed to be in the hospital with our daughter 24/7. We split the shifts. I was 8am-8pm and he was 8pm-8am, I got the tough end trying to keep Katie awake all day...I thought that was tough, but he witnessed Katie's first Grand Mal...and that was WAY tough...in the middle of the night, in her sleep), a neuro psych exam, WADA test and now we move on to subdural electrode placement on April 5th. This is the last of the tests that Katie needs to have done to make sure her PC seizures are only on the left side of her brain. If it comes back positive, we move on to a frontal lobectomy in June. Her seizures are originating in the left hippocampus and spread to the right and she shows signs of Mesial Temporal Schlerosis (from the MRI). The subdural strips WILL confirm that there is NO right side independent activity...that is our hope.

I am looking to find this wonderful woman who set me on my journey/quest to find help for our daughter with intractible EP. If it weren't for her comment to someone else that I had read, who knows how far behind we still might be. You see, even after seeing a neurologist in the SAME hospital, we didn't know of Dr. Zupanc. The neuro we had been seeing (for 13 years) never told us about her or recommended surgery. We don't know if it was because of vanity or what. We have now obviously made the switch and we have run in to our old doc a couple of times in clinic. We just smile and move on.

I want to thank her for that possible life changing post. If anyone knows who I am talking about, please lead her to my post, or me to her. I am eternally grateful...it hasn't been a cheap proposition by any means, but we owed it to our daughter to exhaust all options. We are small business owners, with a not so great insurance plan, but we are positive and we know that God has lead us to this Dr. for a reason...please wish us/Katie luck and keep us/Katie in your prayers on April 5, 2004...this is the make it or break it test...it takes great faith to put your child in a neurosurgeon's hands, especially for a surgery that is considered an "elective" surgery...

AND PLEASE REMEMEBER, YOUR POSTS HERE DO MATTER, TO MANY PEOPLE...we know this first hand...

My profound thanks~~~
tkdmom96
mom of Katie, the most courageous young lady I know

I'm so glad you have decided to share your story with us!

Welcome! :bouncing:

I have been on this board for awhile now and the people around here are so helpful and supportive. When you asked about Epileptologist it reminded me of a post, so I went back and checked. I don't know if it is the post you are talking about, but Tattoo was educating some of us about them. And she mentioned the cleveland clinic. Does her name sound familiar?? I haven't seen any posts from her in a long time! I don't know if she is still around or not? I forgot to write down the post name to but it was around page 53 or later in the archieves... hope that helps!!!

Good luck to you and your family!!
Lisa

Hi tkdmom96,

Thank you for such a wonderful story of hope... Many of us here have children on a similar Journey as your Katie.

I have 2 children with E. Jenny 15 - diagnosed conclusively Sept. 03 - prior to Sept we were treating for ADHD and Jacob (Jake) 2 started seizing at 10 mths. There was no question with Jake - his are rockem' sockem' Grand Mals...

Surgery did come up in conversation regarding Jake some months ago. Until the middle of Sept 03, our stories sounded much the same... He is now 136 days seizure free on Trileptol and Lamictol and Jenny is now 130 days seizure free on Tegratol. She started Tegratol the same night that Jake took his last dose... and I'm thinking the whole time - this is a waist... it didn't work for Jake - what could he be thinking.

However, their pediatric neurologist is very good... in fact when Jake reached a point last March that he was so unresponsive to the standard drugs and his EEG showed marked deterioration he contacted a pediatric Epileptologist for us asking for help. This Dr was able to place Jake into a FDA drug study for Trileptol.

And the rest is history as they say... However, my Mother's heart says that it's just the beginning :)

I would love to know more details of your journey. Did/does Katie have delays or learning disorders. Jenny had a reading and language disorder that we were able to address and over come prior to our knowing she had E. Jake is considered Globally Delayed, and he receives PT, OT and Speech twice a week with great success. To see him now you would think he was a very quiet but normal little boy. He still has a very long road ahead of him, but his future looks much brighter today then it did 6 mths ago!

Thank you for your words of encouragement on posting. The people on this board have been great about giving a little guy a voice – allowing me to better understand and help my children.

Best of luck finding the poster you are looking for. Please feel welcome and come back often. Keep us posted on Katie the next few weeks.

You are both in my thoughts and prayers as you face this next big challenge.

Love and light,

Lisa and kids

Hi LisaG and LisaT,

Thanks for the uplfting thoughts and prayers for Katie...first I have a quick question for searching the archives...I don't know how to get to where LisaT mentioned above. Page 53 of the archives. I went to archives and didn't know where to go from there. I searched through here and there and didn't find anything. It was Tattoo by the way...hopefully she can feel our happiness somehow!

About our Katie> My pregnancy and labor normal, Katie had many ear infections on and off from 4 mo. - 12 mo. Seemed every month it was the other ear. At 9 months went to Dr. for ear infection in the am. Had a fever that day as well. Got a scrip, went home. She ate little, gave her Tylenol and she went for a nap. Nap went longer than normal. I checked on her once or twice, she was asleep. The last time I checked I found her seizing in the crib. I freaked out and called the Dr. office. Seizure stopped while I was on the phone. They told me to bring her in. She had another after I hung up. I went 90 MPH on the interstate talking to her telling her it would be ok and that I would take care of her. Took 6-7 minutes for a normal 12-15 drive! But even that seemed like an eternity! Started seizing again when we got there, wouldn't stop. Had to give her valium, in a vein in the head to stop it. Had her on oxygen as well. All docs and nurses out of the ped dept. were with her. I have learned to be patient while waiting for a Dr. now. You never know why they are late!

Medical transport was called to pick us up and take us to Children's Hosp. of WI. We had a doc and nurse for the ride. Katie was in the hospital for 4 days, diagnosed with CPE. Left with Tegretol, the med she was on for 11 years before it stopped working. That was a long history with a med. Still had breakthroughs over that time, but it worked well. Made it to 2 years, seizure free, at age 5. Tried to take off meds over the summer, didn't work. Made it to week 7 of the wean and had a seizure. Back to square one.

Had many EEGs, Cat scans and MRIs. Showed some spike and no damage on CAT or MRIs. Age 13 all he** broke loose. HORMONES! The last 3 years have been terrible. Tegretol stopped working. Tried XR, Carbatrol, Depakote (severe hair loss & brittle and lost a lot of weight- 110 down to 90 pounds in 4 months), Neurontin, Keppra and now Lamictal. Also, combos of the above. I am missing another med...don't have my notebook by the computer. Katie has CPE, catamenial E and MTS. Summer of 2003's MRI showed a shrinking of the left hippocampus. Didn't supposedly show on 2002 MRI (with old doc). Also, old doc said we should put Katie on a low dose of birth control to help regulate periods and hormones>>>YIKES!!! We found out that the extra estrogen can cause more seizures! (from our new Epileptologist) Our old doc was a regular neurologist...glad we said NO, we'll wait it out a little longer!

Katie went through many of the tests for the surgery process. It was a huge comittment, but worth every penny. We needed to exhaust our options. Did discuss the VNS and Keto diet. These are last resorts if no surgery. Many indicators for surgery, however they saw something on the VEEG that showed on the right side. Don't know if independent activity or a quick cross over to the right from the left. That is why we need to do the subdural electrodes in both temporal lobes, to be sure. Katie was scheduled for a left frontal lobectomy on Dec. 15, 2003. It was cancelled when they re-reviewed (third review), the beginning of November for the surgery, and questioned the VEEG. They have been very careful, and we are thankful! It went to a review board again (17 docs, techs, surgeons, etc.) in order to be cancelled.

Katie's WADA test showed bilateral memory, stronger on the right, and language on the right, which is what we needed for her to be able to have the left frontal lobectomy. Because she started seizing young, her language and over half of her memory moved to the right. That was wonderful news until the right side was brought into the picture a couple of months ago. If she has activity on the right, she will not be able to have surgery at all. Because the left is already compromised with MTS. We are praying (with many of our family & friends) that the activity is LEFT only with a quick cross to the right. If that is it, Katie will have the left front. lobectomy. She understands that this first surgery is important and is really focussed. She has been amazingly positive! She keeps my husband and I uplifted...she believes God has lead us in this direction for a reason.

To prepare, Katie needs (and wants) to give her own blood for the surgery, so we need to do that. 2 units and an additional from my husband. I can't give because we shared in pregnancy. She needs preop stuff done and they require pre-surgical counseling, which she started last week. To prepare for the surgery and after. If it is not good news (WHICH IT WILL BE!!!) there will be a grieving process to go through, a let down. It is a serious thing to build up to, and then to be let down...(WHICH WE WON'T BE!!!) She will be out of school for 3 weeks for this first phase. One week for the surgery/collection of info in monitoring unit and 2 weeks for recovery. (infection control, staying at home) If lobectomy, that will be in June when school is out.

Katie's IQ came back solidly normal with the neuro psych exam, trouble with spatial items (explains lower grade in Geometry this year>low 80's-upper 70's, when she had a 92-94 in Algebra last year), trouble with recall and expressive language (recalling words to use in conversation and speaking infront of groups impromtu, along with using larger vocab in her writing-she is a little immature in her writing compared to other Freshman) and some comprehension issues. All have been able to be dealt with so far. However, it has been increasingly more noticable as she moves through the upper grades. A little more struggle. Has to do with the damage to the hippocampus (MTS), which deals with short term memory. Does affect her note taking at times.

All of our knowledge has come to us over the last 8 months, when she has had E for 15 years! It has been truly mind stuffing! Just a year ago we had no idea what the cause was and thought we would never know. I beat myself up for years over what I may have done wrong during my pregnancy, if Katie hit her head, not getting to her quicker when she was napping (with her seizure that day), not bringing her temp down lower before her nap that day, you name it. Our new doc said it would have shown sooner or later.

Sorry for the novel again, but I said that if Katie is able to touch the lives of others through her journey, I owe it to share. If it weren't for the post I read that was directed to someone else, Katie may not be where she is today. We prayed for God's guidance...when we needed an aggressive doc, we got one. Now it is totally in God's hands as we move forward. We pray for the knowledge and the steadiness of the hands of our neurosurgeon, Dr. Mueller, on April 5th. We should know within 5-7 days in the monitoring unit, if it is a go for the lobectomy.

PLEASE NEVER STOP READING, SEARCHING AND ASKING QUESTIONS, BECAUSE YOU NEVER KNOW WHERE THE NEXT LINE OR ANSWER WILL TAKE YOU...we are grateful and thankful...

Thank you for reading this way too looooooooooooooooooong post, I try to give the most detail I can...

tkdmom96 (Vicki)
mom of Katie, the most courageous young lady I know

tkdmom96= Katie is a First Degree Black Belt in Tae Kwon Do (working on 2nd degree, still) and her brother Andrew is a Black Belt (done)...so that is why I am tkdmom96...they started in 1996. I could also tell you what we learned about how piano has helped Katie's E. over the last 7 years (right and left hands working together) and how the TKD has helped with her physical (balance, focus, stress, right side body strength-because of seizures on left) strength and endurance. She did all of this, just because. NOT because of her E., she just showed an interest. And all have been instrumental in helping her with her E. Divine guidance? Hmmmmmmmm....

Took me awhile to figure this new board out, so there could be a faster way to do this... but this is how I came across it. At the bottom of the Epilepsy page you'll come across sorted by and underneath that is 'from the'.. in that box I had to put ' beginning' in that to get to page 53 or 54. I hope this helps, wish I would of thought to write down the name of the post :rolleyes:

Happy hunting, let me know if I can be anymore help!!??

Lisa

Hi LisaT,

Thanks for the directions! It took awhile, but I did find the pages and even more of her comments from 2001 & 2002. I also came across a post from another member that was looking for her as well (in late 2002). Another member responded to that post, saying she isn't allowed to post here anymore. Thanks for the help in locating the info. I will check in with Katie's progress as we move forward...and will try to keep the posts shorter... :) Vicki

tkdmom96
mom of Katie, the most courageous young lady I know

Hi Vicki!

Don't worry about keeping the posts shorter!! Its a good way to connect with people if you can read their full stories!! I just didn't have time to respond the other day more than what I did!! Sorry!

Katie sounds very couragious (right along with her family)! ;) And don't you dare blame yourself for her E, nothing could of prevented it from coming into play if it wanted too.

I have heard of a WADA test, but can you tell me about it? I have not had one. I am only two and half years into this and still learning ....

Have a nice night and my prayers will be with your family!
Lisa

HI Vickie,

I'm with Lisa T. Don't worry about the length. I wish I had more time to write in greater detail. But, then who on earth would really read it right... Other parents with E kids... other adults dealing with it in their daily lives.

I've often thought that I would write it for a book at some point. I will forever remember the feeling of being the "ONLY" person in the world who has ever delt with this. How wrong was I?

It's good to share. Very theraputic (sp)! More details would be wonderful.

Ms Katie sounds like a great young woman. I know that when Jenny found out for sure what we (she) was dealing with, she spoke to each of her teachers. She explained what the meds do to her - memory recall, speech, that she may be sleepier in class or more hyper etc. She talked to them about how HER seizures present themselves and the fact that they may never be aware that she's had one since it's not the "classic" seizure type most people assume someone with E has (ie Grand Mals). She has asked that they contact me if they feel that her grades are/have dropped well before it goes to a report of any sort. We have only had issues in one Gov. honors class, were she wasn't able to keep up with course work because she sleeps now of an evening and just didn't have the energy to type 8 - 10 pages of notes each night. Oh well. Her councler is now aware of this and will work with both Jenny, the teachers and myself if this becomes an issue going forward.

Need to scoot for now!

Love and light

Lisa and Kids

Hi LisaG,

Sounds like your daughter has a very good handle on her situation for being "new" to it.
She is doing all the right things with the teachers too! Thumbs UP! Katie is doing the same...Geometry is a real bugger tho. She has a very analytical male teacher, and is having a hard time grasping. She is going to him tomorrow to ask to have him to try to explain another way, so she gets it. We have made it this far into the year, don't want to blow it now so that she has to retake it again! YUCK! I wonder if Katie and Jenny would like to talk on the boards...I know they can't contact each other outside the boards, or you get in trouble, or is there another area to do so? It might be nice to talk to someone their age with similar E.

Has Jenny noticed a difference with the attitude of friends or other classmates? Has she had seizures at school that have been seen? This has been difficult for Katie, since she has had more seizures over the last 3 years. I had a visit with the therapist today re: Katie, that was interesting! We discussed what they will cover with her over the upcoming weeks.

Isn't it interesting that when you say E, people think of flop to floor GM. There is such a terrible stigma to E. It is really coming out into the open more so now. I'm glad for that, since 2 million people have E. (I think that's the number I read recently)

Thanks for the supportive comments, I appreciate it! Continued good thoughts to Jenny & Jake...

Vicki
mom of Katie, the most courageous young lady I know

Hi LisaT,

Thanks for the encouraging comments! I did beat myself up for a LOOOOOONG time!
We also thought it might have been the DPT shots. There was a lot# from 1988 that caused brain damage/problems to some babies. Katie fell into that time frame for her first sets of shots, but we couldn't prove anything. I was a wreck when Andrew was born, we held his shots until he was a year old.

The WADA test...very interesting test. This test is used in conjunction with the Neuro Psych exam to tell where/what your left & right brain are doing and responsible for. I think this is used mostly if you are headed on the surgery track. It is an outpatient/day surgery. Katie's procedure was to start at 8:30am and didn't until 1:30pm. There was an emergency that needed to go through first. She hadn't eaten since 8:00 pm the night before and didn't have anything until around 3:30pm. She was UGLY! Sorry for getting off track...IV put in at 7:30am, rolled down to radiology around 8:00am. Waited...waited...waited...til 1:30pm. She rolled in with an E nurse from our CE clinic, 2 Neuro pysch docs, radiologist, anethesiologist, 2 rad. nurses, Eplileptologist doc, a PA and a resident. A room full! They also came in and out, during the procedure, telling us Katie was doing well and that she loved us. She was more worried about us than herself.

Here's the procedure: A catheter is placed in the femoral artery in the groin. It is moved up through the heart and into the left corotid artery. Sodium Ambitol (numbing agent) is injected into the catheter and puts the left side of the brain to sleep for 3-5 minutes. They know it is asleep because Katie had to keep her right arm in the air, then it fell when the left was asleep. They have only a short time to ask her questions (colors on cards, which way arrow is pointing on card), read a TV screen with simple sentences ("the rabbit ran under the fence" " the dog barked at the boy") and remember 8 items they showed her at the beginning of the left being put to sleep (paperclip, pencil, egg beater, doll, cup, toy car, etc). They pull the catheter down into the heart again and wait for the left to wake up, and make sure she is "clear headed". They then put the catheter up the right corotid artery and inject the sodium ambitol. Wait for the left arm to fall and repeat the same tests. Again, only minutes to do it. Then the catheter is removed, they test again to make sure she was "with it", had a PA putting pressure on the artery to make sure it clotted, check vitals and and they came out to give us the results while Katie rested. ALL of them except the radiologist and anethesiologist came out. It was very good news for Katie since we thought her seizures start left. Katie's language and over 1/2 of memory are on the right side. So that helps with having a "safer" surgery. Not near as many "eloquent" areas. (term docs use for areas of the brain where language, hearing, motor skills, eyesight, memory etc. are)

After the procedure, she went back up to day surgery and had to lay flat for an additional 4 hours. Vitals and groin checked every 15 minutes the first hour (so no blood clots), then every 1/2 hour thereafter. They need to make sure the femoral artery is clotted shut, before you are discharged. That is a serious artery. The Radiologist came up to check on Katie and gave her the OK to leave around 7pm. No major physical activity for a week after. No gym, heavy lifting etc. When we got home, not on her feet at all. The next day she went back to school. She was limping, it was sore. Don't want to upset the scab either! Had to keep it covered in the shower and at night, for almost 2 weeks. Until it healed. I kept her out of gym for 2 weeks, until the scab came off.

If you have any other questions about tests, please ask...I do recommend an Epileptologist though, instead of a regular Neurologist. They know a lot more about new seizure meds., combinations of meds, other tests to use to find out where seizures are focussing from, consult with other Epileptologists across the nation, and are ontop of all the new stuff. I don't know what area you are from, but Cleveland Clinic (Cleveland, Ohio)is where a good doc that Dr. Zupanc knows well is (female-can't think of her name right now), Johns Hopkins in Baltimore, Froedert Hospital in Milwaukee, St. Luke's Hospital in Milwaukee (both have Comprehensive Epilepsy Programs/Clinics), University of Washington at Harborview (state of Washington) has a clinic...check on the internet for "Comprehensive Epilepsy Clinics". I know there are a couple more. We wasted such precious time goofing around with meds over the last 3-4 years, that will only stand a 10-15% of working for Katie. Because CP seizures are difficult to control over the long haul. However, we also don't know where we are with the surgery yet. But it looks very promising. And we have to be positive!

Thanks so much for the support and prayers...we can use all that are offered...

Vicki
mom of Katie, the most courageous young lady I know

Hello there. Another visitor to this board emailed me that someone was looking for me. I used to post here, but haven't been here in a while. I am not able to post using the name you know me as. I read all of the posts, and I am so happy if I helped in any way. We all gain experience dealing with Epilepsy as do our family members, and we all are able to give this experience, strength, and hope to others. I also gain from giving my experience to others, and doing this has helped me to grow immensely. I am now starting a chorus in my city, and the strength to undertake such a project began from sharing of my experiences on boards like this one. I was only glad to help, and you are in my prayers for an easy time in April. 'Phoebe'

Thank you Phoebe for your reply and to the person who told you of my post. This has been an incredible journey over the last 8-9 months. We are now at the critical point. This surgery in April will tell whether or not Katie moves forward to the lobectomy. Our Epileptologist is positive, and we must be as well. We won't know, until we know. Thank you for the posts you had made re: Epileptologists and your supportive thoughts for Katie This was the specialist that made the difference for us. Continued good luck to you and I will post here in April (mid month), after Katie's results come in... AND I KNOW IT WILL BE GOOD NEWS!!!

Again, my sincerest thanks...

Vicki
mom of Katie, the most courageous young lady I know

You are so welcome. As I said, I, too, benefit. When you mentioned your increible journey over these past months, I thought of something I just said about myself. For me, the time after surgery has also been an incredible journey. I have discovered talents I didn't know I had and have begun to realize some of them. It still is a time of great discovery and exciting as well. I am reminded of a young butterfly-to-be struggling so hard to get out of his/her cocoon. That process is necessary for it to be able to reach its full potential. You can take comfort in the fact that this difficult period for you and Katie just may produce a beautiful butterfly. I have taped to my monitor these words I drew out of a hat to discuss at a meeting. They really do fit.
" Though we may never be perfect, continued spiritual progress will reveal to us our enormous potential." 'Phoebe'

You are so welcome. As I said, I, too, benefit. When you mentioned your increible journey over these past months, I thought of something I just said about myself. For me, the time after surgery has also been an incredible journey. I have discovered talents I didn't know I had and have begun to realize some of them. It still is a time of great discovery and exciting as well. I am reminded of a young butterfly-to-be struggling so hard to get out of his/her cocoon. That process is necessary for it to be able to reach its full potential. You can take comfort in the fact that this difficult period for you and Katie just may produce a beautiful butterfly. I have taped to my monitor these words I drew out of a hat to discuss at a meeting. They really do fit.
" Though we may never be perfect, continued spiritual progress will reveal to us our enormous potential." 'Phoebe'

Addendum: The surgery I had for my Mesial Temporal Sclerosis (MTS) was a Right Anterior Temporal Lobectomy with Amygdalo-Hippocampectomy. You had written Frontal. There is a Frontal lobe of the brain, but the T in your MTS is for Temporal lobe where the majority of Complex Partial epilepsies originate. The Amygdala and Hippocampus are very Epileptogenic, and the focus is usually found in those areas. Those on the side of the focus are usually removed in the Typical Epilepsy surgery for that reason. Is Katie having a part of her Frontal lobe removed or part of her Temporal lobe? All of her testing is what I had. Memory is located in the Hippocampal area which is just behind the Temporal lobe. Hope this helps, and continued good luck. 'Phoebe'

Hi Phoebe,

Yes, it is a temporal lobectomy with a hippocampectomy that will be done.
I don't know why I wrote frontal...EEK! I hope I didn't confuse anyone now!
(Her seizures spread to the frontal lobe)

They will remove the area surrounding the hippocampus, about the size of 1/2 of a banana, to hopefully remove the seizure "pathways" that have been created. They mentioned the wording "irritated tissue" as well. I don't know at this point in time if the Amygdala is going to be taken. It has not been specifically mentioned. (as anterior has not been mentioned, at this point) I believe it will depend on the subdural strip placement, as to what and how much is affected by the seizures. I do know they often take the Amygdala as well.


We have heard very positive stories, but we are not blind to the risks involved.
Especially since Katie needs to have the burr hole surgery first. Two major surgeries to make it through. She is in excellent health and we have a great neurosurgeon with a lot of experience in EP surgery and burr hole work. So we need to be positive!

Thanks for clarifying my wording error. That is important, especially with locating things within the brain! Sure wouldn't want the surgeon in the wrong area!

Vicki
mom of Katie, the most courageous young lady I know

How have you been since your surgery? I forgot, how long ago was it? 2 or 3 years ago? Are you seizure free? Any AEDs?

Wasn't the WADA test amazingly informative? Katie took part in a fMRI grant study at the Medical College of Wisconsin, where they are developing a "functional MRI" that they hope will eventually replace the intrusive WADA test. The test took 1 1/2 hours (laying on an MRI scanning table). Katie's neuropsych and WADA test made her an appealing candidate. Our Epileptologist looked at the results, but they cannot be used for her treatment because it is experimental. Katie missed a little school and got paid, which we didn't even know when she agreed to do it. A nice surprise!

Hi there. It has been 5.5 years since my surgery. I have no had a CP seizure since. I had one of my typical SPs, but had not had my med for too long a time. I do take a low dose of Keppra, but that is all. Remember that I had seizures for more than 35 years before learning there was a better way for me. That's a long time and those 'pathways' your Epi told you about had that long time to develop. I would not be at all surprised if i had a mirror focus on the opposite side from that very thing. My quality of life is so much better as is my memory. The meds can take their toll on both quality of life and memory. I also have discovered i have a sort of giggle that I never did before, It seems strange to me to laugh that way. I also have realized that I slept a lot of my life away sleeping to 1pmif possible. There has been a lot of life missed, so I strongly suggest that parents check into surgery or at least other options before the seizures and the meds take their toll on growth and development and other qualities of life. I am much happier since surgery. Friends told me, You are not the same person, but I imagine that they did not know the real me until the meds were out of my system. Another said," You were so angry." They knew me as a person who had seizures and took heavy doses of meds, a person struggling, angry, depressed, and frustrated. With the meds and seizures gone, those characteristics decreased as well. There is an adjustment period after surgery if you are older when it is done since all of the growth and developmental milestones have passed. For me, it was very similar to Post Traumtic Stress Disorder or all of a sudden coming out from under that AED cloud to find a world alive with so much to see and do and being so behind. I have tried to make up some time, but I am still going forward. It has been an incredible and fascinating journey. I am so glad I had it done! I had my surgery at the Medical College of Georgia in Augusta, Ga by Dr Joseph Smith. Good luck to you and your little one. By the way, the Hippocampus and the Amygdala remind me of Tonsils and Adenoids. They usually go in after the tonsils but take the adenoids too while they're in there. Phoebe

That's funny...equating the Hippo and the Amygdala to the tonsils and adenoids...that's pretty much what it is! We have not heard directly regarding the Amygdala, other things to discuss first I guess. Katie is currently taking 3000mg/Keppra and 400mg/Lamictal per day.

Katie is also in counceling to prepare for the surgeries and their outcomes. If we are not able to move forward, we would have a grieving process to go through. That would mean the door is closed for surgery. I can't bare to even contemplate that right now. Our Epi is still positive (even with the possible "activity" on the right) that we are going forward with the subdural strip placement. We believe she wouldn't put Katie (and our family) through this if she didn't have an excellent reason for doing so. I asked her (Epi), "if this was your daughter, would you do this subdural placement?" and she replied, "immediately and absolutely." (with a look of determination, then a smile)

I had to attend a one hour pre-counceling session for Katie, to discuss her history, my pregnancy and all of that stuff. (of course my husband conveniently couldn't make it, client appt.) The counselor asked me what Katie's personality is like, on and off of meds. I said Katie has been on meds since the age of 9 months! The only thing I remember is that she was a happy baby before meds, and since then, who knows?!? You mentioned the change in your personality, emotions, memory after surgery and the lowering of your meds. I told the councelor, that's what most anti-convulsants do, they calm the brain so you don't have seizures! That is why depression is one of the side effects to AEDs that you need to watch for. Who knows what "butterfly" is in Katie's cocoon right now? We just don't know...

You have no idea what is REALLY the problem, what is the person REALLY like
without meds and would they have THESE issues IF they didn't have E and take meds. Who knows? Katie has always been on the quiet/shy side and we RARELY disciplined her ('don't touch' and 'no-no' stuff). She is a people pleaser, very loving and compassionate. Who knows where we'll be at in the next 6 months to a year. That question makes me a little nervous, but we'll have to deal with that when the time comes. I certainly hope the base of her personality has been shaped and that we will just see a little more outgoing, relaxed, and confident personality. Not having to worry about seizures every minute will be unbelievably freeing for her.

Hopefully with Katie only being 16, we have caught this soon enough to catch all of the "pathways" that need to be addressed. I think that is why they want to check that right side as well, the mirror affect. I once asked the question in clinic if the right side could "learn" to seize as well. Her (Epi) comment was "that is a very controversial subject at this time. There are mixed thoughts regarding that issue". There is a possibility...creating a mirror focus, as you mentioned above. But until we know, we don't know...

So, we are at the 5 week mark right now...yes, counting down! We are working hard at keeping Katie healthy for her blood donation and the surgery.
Andrew (her brother) is going to Rome (class trip). He leaves 5 days before the surgery and returns on April 13th. Katie and I are not going to the airport to send him off. Last year Katie went on the same trip (talk about letting go, that's another whole issue!), and that was when SARS was nearing it's peak. When we picked her up at O'Hare, in Chicago, a Hong Kong flight had come in just ahead of her flight. Everyone from the flight had surgical masks on, even the people who were picking these people up! So, we are deciding to forego that. My husband will take him and Katie and I will stuff little good-bye/love notes in his suitcase, to find when he unpacks.

The Epi, docs, and nurses have been very sensitive to Andrew's needs as well. They ask him if he understands what will be done, if he has any questions, etc. He is 14 and has been there for Katie through thick and thin. They are pretty close. (although they do have their sib moments) Andrew has been letting us know when Katie is having a seizure since he was 4 years old. So he is a BIG part of what is going on. It will be hard for him to leave, but he likes the Epi and others and feels comfortable with everything, so he says.

Wow, this is long...sorry! I'll stop now...just some of the things that we have gone through and are dealing with.

I am VERY happy to hear of your surgical success...I can't believe it was that long ago already. But I suppose if I came across posts in August of 2002, that would make sense! Enjoy your "growth" journey, I can't even begin to imagine how you feel...stretch those wings!

All my best to you and I will post as soon as we know something...hopefully you will be able to keep an eye out for it, sometime around the 12th-16th of April, I hope!

Vicki
mom of Katie, the most courageous young lady I know

Hello and thanks. I am trying to stretch my wings. I know I have a lot of potential, but I am not sure what to do with it. That makes this journey exciting! I am very happy with how my surgery turned out. I know my neurosurgeon took a very long time and tried to remove all of the diseased tissue he could. It took 10 hrs. That makes me think that over the years another focus possibly developed on the left since I do have a very rare 1 sec aura and need the low dose of an AED that has no side effects that interfer too much with the quality of my life. I was told going in that I would probably have to take an AED all of my life. This one works, so I do not mind. Plus, the dose is fairly low to me anyway. Another thing that makes me believe in the Kindling theory is the fact that mine went from Simple Partials, to Complex Partials, to having Secondarily Generalized features over time. In other words, they worsened. You mentioned your son Andrew needing to be away for Katie's surgery, one of my sisters was house locked soon to deliver her third child during mine. My brother just below me is Andy, and my first name is Kay. Talk about coincidences! I wish for you, Katie, and your family the same good results that I had. I hope that you see your daughter blossom into the young lady she was meant to be once this is all over. Oh, I wanted to mention that the Anterior portion of the Temporal lobe is in the front near the face. Could they possibly have said they would remove the front part and you may have thought Frontal? Could be. They usually remove that front portion so they can get to the Hippocampus which is just behind it. I got out my father's NeuroAnatomy book when I was doing my research before surgery. I wanted to know where things were and exactly what did what. lol! You try and take it as easy as you can if that's possible. You are in my thoughts and prayers. Phoebe (Kay)

Phoebe (K),

UHG...I just spent 30 minutes typing you a reply, and hit the wrong DARN key, and it disappeared! UHG!!!!!!!!!


I am a slow typer, obviously...I will make it much shorter! Spoke with the head Epi nurse last night. We discussed some surgery questions Katie had and a few other things. They may only need to do one hole in each temporal lobe (we were expecting 2 or 3 on each side), but she'll get absolute confirmation on that and get back to me. Also spoke about the Amygdala and the exact resection area. They will make a final decision after the subdural strips and info is gathered. Don't want to make any speculation until the Epi and Neurosurgeon confer. We don't have a second surgery date set yet, but looking like the first or second week in June.

Katie has only had one secondary generalized seizure, that we know of. It was in the hospital last August, right after she went to sleep (3 a.m.). She was sleep deprived (3 hours per night), meds removed and being physically challenged (riding the exercise bike 45 minutes, 3 times per day. The first being 10 minutes after waking- 6 a.m.). So we hope to be able to handle this before more damage or changes occur. She does have SPs almost daily. She does have days where she has none with more around her period.

K, do you mind if I ask how old you are now and are you a nurse or in the medical field? I thought I remembered something to that affect. Also, would you mind sharing regarding your recovery (pain issues), memory or physical therapy, or anything you found helpful while you were recooperating? I'd like an idea as far as what we have on our horizon. If you don't feel comfortable, I'll certainly understand. And I do realize that you and Katie are different, and she may not have the same experiences. We have spoken with some younger people (and their parents) and the way they explained wasn't the best.

Thanks again for your insight, knowledge and for taking the time to answer my post...well, postS...

Vicki
mom of Katie, the most courageous young lady I know

P.S. QUITE some coinsidences with names and issues!

P.S.S. Are you able to drive? Katie wanted me to ask you...I almost forgot!

:wave: I apologize for taking so long to get back to you. I did write a response, an epistle in fact, but lost it just as happened to you. AARGH! My surgery experience was a piece of cake compared to what most people imagine it will be. We usually are taken to the ICU for one night after surgery, and then I went back to the EMU for the duration of my stay. I didn't need the level of care that an ICU provides after that first night. Two days after surgery the staff got me out of bed, made me walk down the hall and wash my hair. Gently of course. Any surgical site must be kept clean and washing my hair did just that. It also made me feel a lot better, got me back into the routine of daily living, allowed me to take a bath, and cleaned the operative site. They did not shave my entire head and only did shave where the incisions were to be. This was done after I went down that morning. Getting out of bed as soon as able is standard care for surgical patients to prevent complications. Expect there to be some bruising and swelling immediately after surgery since any surgery is an insult to the body in a general sense as is any injury. However, just as visible bruising from a minor injury is handled by the body and disappears, so will the swelling and bruising visible after brain surgery. That bruising and swelling is a normal response to surgery. I had very little bruising, but that does vary from case to case from what I have learned. It does resolve itself, however. There are no visible scars at all, and I also have the burr hole remains. My stay was exactly one week from surgery to discharge. Some people leave earlier than that, but I entered the hospital toxic on Tegretol from my other Center. My docs wanted my levels more stable than that before sending me home. I was discharged on much lower doses than I was taking prior to admission, and those were decreased as well to my low dose of Keppra. I had some minor pain, but did not need to finish the small bottle of heavy duty pain pills. Tylenol was sufficient for most of my pain and even that did not last very long. there is some discomfort with any surgery. My instructions were pretty simple. I was to use only baby shampoo for a few weeks. No medicated shampoos. I had to use a white pillow case to prevent the surgical site from coming in contact with dyes and other chemicals. Basically protect the site by not lifting anything heavy, eat a healthy diet, and take care of myself. I listened to my body, and if I felt I needed to rest, I did. I was not working at the time of my surgery, so I did not feel rushed to get back to work. The overall goal of this surgery as with any other is to increase the quality of life so that the patient is able to go forward with their life. So we try to go forward once surgery is over, but pace ourselves to that we are going about our lives but taking care and pacing ourselves so as not to overdo it. It really was an easy time, and one I would not hesitate to do again if the need should arise provided I had my very special team to provide my care. I also want to add that since it just may be that Katie could leave the hospital on lower doses of meds as I did, expect her to notice the lowering of the levels. I became very depressed after surgery, but I had been on very high doses of meds! She may begin to experience small changes like the things typical teens feel when not under the influence of AEDs. This is a process, and I would expect her to begin to slowly emerge from behind that AED cloud and desire to spread her wings. Allow her to go forward with her life gaining more independence over time but still take care to make sure she does stay seizure free and safe as you would in any case. This may be a learning process for both of you. I was in my 40's when I finally learned that there was better care out there, so Katie is going through this at a much better time in her life than I did. To answer your question, I do drive as I have not had any impairment of consciousness since surgery. I have my appt with my Epi tomorrow, and it has been 5.5 years since my surgery. I had an easy time, a wonderful team all around, and am thankful I had it done. I hope this helps. I wish you the best. Geeze! Another epistle! Kay

Kay, thanks for the info you provided. I will share some of it with Katie. As I mentioned, we need to make it through the burr hole surgery first. Katie was suppose to give her blood tomorrow, but started a cold last night. What timing! UHG! We still have time to get 2 units done, just wish it could have been smoother. Good to get the cold out of the way NOW, rather than a month from now...could cause the surgery to be postponed, then we'll be off of our "schedule" for the June date.

They mentioned Katie may need narcotics after the surgery, for the pain, and then wean off. She is a tough cookie and I don't expect it will be long that she will need that strong of a med.

She is SOOOOOOOO ready...she's counting the days! Can you believe that? She amazes me every day! She is so positive, I can't think of anything but good thoughts!

I understand your point of coming down/off of the AEDs. Her personality could be completely different and there could be a flood of different emotions because of the lowering/removal of sedating AED meds. She is already in counseling (THERAPY) for this reason. To prepare for any changes. It will certainly be an adjustment if all of a sudden an outgoing, "I want to do everything and you can't stop me" person emerges...it'll probably scare the H*** out of us! But I do hope she has a base to her personality that won't be affected. It would be difficult to see her go from a compassionate and responsible person to one of reckless abandonment...eek...we need to have her on an even ground before college begins.

You have been an incredible source of inspiration and information for us, and we thank you! Katie has read a couple of your posts, as have my husband and son Andrew. Katie has been treated as an adult through this whole process, by the medical team and by us, and we all feel it was the correct decision. She will be the one experiencing the changes in her life, this is ALL about her.

Please keep an eye out for my post in April. I certainly hope we don't lose touch during this time. I may have a few more questions for you, after we hear the good news in April that we are going forward with the second surgery. All my best to you as well, as you continue on your journey of discovery...

Vicki
mom of Katie, the most courageous young lady I know

P.S. I will post to this thread, so you know to look for it under this heading

From above post:

But I do hope she has a base to her personality that won't be affected. It would be difficult to see her go from a compassionate and responsible person to one of reckless abandonment...eek...

I do not believe it would be possible for any chemical to undo the genetic base of a personality. A lot of how a person expresses him/herself is inherited as in a sense of humor as well as learned. Just remember that this is a child you raised and one to whom you taught the values etc you chose. Those will not change. If anything she may be more able to become aware of and express all of what she has inherited from her parents that make her who she is. Phoebe

Thank you...

Vicki
mom of Katie, the most courageous young lady I know

Hi everyone!

Katie has 17 days and counting! Pre-op is set for March 31st in the afternoon. We had a meeting with the headmaster of our school and they are going to do whatever they can to make it an easy return to school for Katie after the surgery. They don't even want to give her any work, they want her to just relax and recoop. He also said "there won't be anyone standing at the door with a pile of papers for Katie to do upon her return. We will be as flexible as possible, when she returns." I was sooooooo relieved! I was set to be her tutor and I had a Geometry tutor lined up to come to the house for that subject. One subject I didn't want to deal with!

So, we're headed into the home stretch! Katie is ready and wants to get it done...We have a community of people praying for us, Andrew will be in Rome during the surgery (class trip) what more could you ask for!

Please pray that Katie stays healthy until the time of her surgery, that is what we need right now...

Take care,

Vicki
mom of Katie, the most courageous young lady I know

Hello. I know you must be feeling relieved that things have fallen into place as they have. I wish you and Katie the best, and she will be in my prayers for a smooth and easy surgical experience and recovery. Keep us posted. Phoebe

Hi all,

Well, yesterday was a rough day. Katie went to the blood center to give her unit of blood for the surgery (autologus). She got hooked up and about a 1/3 of the way through her vein collapsed and blood leaked under her skin. Not fun. They got to it right away, checked her blood pressure, iced it and kept an eye on her. Because Katie is prone to seizures, I needed to be within eye shot. So, after about 15 minutes they asked Katie if she still wanted to try to finish, there wasn't enough blood for a full unit. She decided to stay the course and give it a try. UHG! Another nurse came over to do the insertion of the needle. She was MUCH better! If you have never donated, those needles are much bigger and have a larger opening for the blood to flow through. All went well, and she was able to finish. It was suppose to take about an hour and we left right around the 2 hour mark.

We already had one mishap with the blood center. My husband went on March 5th (Friday) to do a directed donation for Katie. They said they would call if he wasn't a match. We got a call on the following Thursday that he was a match however the unit got contaminated when they were doing the usual testing (HIV, Hepatitis, West Nile etc.) so the blood needed to be destroyed!!! UHG!!! He was told he couldn't donate again for another 7 weeks because of FDA guidelines. So, no more blood from dad before the surgery. I contacted a friend of mine, who happens to be Katie's blood type and she donated for Katie on March 17th. Hopefully her unit and Katie's will make it unscathed. What a rigamaroll...

Now we wait for the pre-op appt. on the 31st and work at keeping her healthy, and get her iron back up after the blood unit. Thanks for the support, Katie reminded me this morning that we are 2 weeks from tomorrow...UHG! I can't believe it's that close already...I'm sure I'll loose it soon......

Take care,
Vicki

mom of Katie, the most courageous young lady I know

Hi there. I just noticed that it was a week away from Katie's pre-op appt. Thought I'd post a message. I didn't have to through saving a unit of blood before my surgery. I don't imagine there was much blood loss in the first place based on where the surgery was done, but if it was needed, my type is rather common so they needed to take my own. Most surgeons like to have some available though. I know yu are getting nervous, but as long as you trust the ability of the neurosurgeon, Katie should do well. I went through this all by myself, surgery and all, but I was older too. I hope she has an easy time of it, and I will be looking for your posts. You're almost there. Kay

Thanks Kay for checking in. A couple of big sighs right now. Katie giving her unit of blood really set in the 'reality" of the whole thing. The neurosurgeon wanted 2 units for red blood cells. Also working on getting Andrew off to Italy, he leaves the 31st, 8th grade class trip. He'll be gone until April 13th. So, as you said, we're almost there. Just hope Katie's body cooperates accordingly! Ontop of everything else, she may have her period. UHG! She's never on time and was due today. She usually runs around the 35-40 day mark. Actually it could help us, by enticing some seizure activity. Could be a positive, but not overly comfortable for her. (can't get out of bed to use the restroom) Thanks again, and I'll be here as soon as I can with the results we are hoping for!

Vicki
mom of Katie, the most courageous young lady I know

You guys will probably laugh...Katie got her period today!!! She'll be done before her surgery! YAHOOOOOOOOOOOOOOOOO!!! Just wanted to share a smile! A relief to her AND to me! The bed pan thing was already making me nervous...

Phew......one less thing to deal with...keeping the iron count up now

Vicki
mom of Katie, the most couageous young lady I know

Hi there. Things are still moving smoothy it looks like. I did want to tell you that when I saw my Epi earlier this month, I asked specifically about any possible involvement on the left side. No one had ever mentioned the left at all, but since I still take one AED, I needed to check that out. He told me that there were Interictal ( between seizures) discharges noticed on the left during my VEEG. The main focus where my CP originated was on the right. I wanted to mention this since for me and even though there was activity on the other side, I was able to have surgery. I do have a better quality of life and do not in any way regret my decision. Since the one AED is great at controlling any backfires the left may produce, those backfires are not severe enough to exceed the seizure threshold, and thus this AED prevents what to me is full Partial sz from occuring. I wanted you to have hope that the upcoming test will be positive since Quality of Life is the issue and the only reason for going through any of this. Kay

Hi Kay, That is what they are looking into with this subdural placement. Any interictal right side activity. Because there was so much for the EEG electrodes to go through (skin, bone, dura, etc) they weren't positive if it was a quick crossover (focus left with a quick cross to the right) or if it is independent activity. That is what they need to conclude with this surgery.
From what I understand, they will not do surgery if there is activity found on the right, because Katie's memory is already compromised on the left. (MTS)
And, her language and partial memory moved to the right side as well. So I don't know what will be said when we are all said and done. Katie had her pre-op today, took about 1 1/2 hours. Signing the consent form sure put the finality in it all. We are ready, and will not back down. We need answers, and this is the way it needs to be done. We just heard another story today of an 17 year old boy who had a left temporal lobectomy 6 years ago and has been seizure free for 5 of those 6 years, no meds and was accepted to college for the fall. He had seizures from the age of 5 to 12. He is almost 18. He is the son of the nurse who did Katie's pre-op! What GREAT hope! It was touching...she had goose bumps telling us...I had goose bumps listening! He also has his drivers license. Well, our son Andrew is off to Italy in 12 hours, need to scoot and finish packing him up. He has been a real advocate for Katie all of these years. He is nervous about being away for her surgery, but he will be occupied and having a great time.

Take care and I'll be back her as soon as I can with good news...

Vicki
mom of Katie, the most courageous young lady I know

Hi Guys,

I posted on a new thread for Katie's surgery and test results...

YAH! We're home already!!! We can't believe it either!

Read the post under: Good Friday...Good News

Vicki
mom of Katie, the daughter I admire more than words can say

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