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



Epilepsy Message Board

  • EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 02-02-2004, 11:13 PM   #1
    tkdmom96
    Senior Veteran
     
    Join Date: Feb 2004
    Posts: 679
    tkdmom96 HB User
    Exclamation EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Sponsors Lightbulb
       
    Old 02-03-2004, 06:12 PM   #2
    Lisa T
    Veteran
    (female)
     
    Join Date: Jan 2002
    Location: Ohio
    Posts: 327
    Lisa T HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

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

    Welcome!

    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
    __________________
    Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

     
    Old 02-06-2004, 09:33 AM   #3
    LisaG890
    Veteran
     
    Join Date: Apr 2003
    Location: St Petersburg, FL US
    Posts: 445
    LisaG890 HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 02-07-2004, 10:44 PM   #4
    tkdmom96
    Senior Veteran
     
    Join Date: Feb 2004
    Posts: 679
    tkdmom96 HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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....

     
    Old 02-08-2004, 08:23 AM   #5
    Lisa T
    Veteran
    (female)
     
    Join Date: Jan 2002
    Location: Ohio
    Posts: 327
    Lisa T HB User
    Talking Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

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

    Lisa
    __________________
    Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    Last edited by Lisa T; 02-26-2004 at 06:53 PM.

     
    Old 02-09-2004, 09:51 AM   #6
    tkdmom96
    Senior Veteran
     
    Join Date: Feb 2004
    Posts: 679
    tkdmom96 HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 02-09-2004, 05:20 PM   #7
    Lisa T
    Veteran
    (female)
     
    Join Date: Jan 2002
    Location: Ohio
    Posts: 327
    Lisa T HB User
    Wink Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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
    __________________
    Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

     
    Old 02-10-2004, 01:17 PM   #8
    LisaG890
    Veteran
     
    Join Date: Apr 2003
    Location: St Petersburg, FL US
    Posts: 445
    LisaG890 HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 02-10-2004, 07:37 PM   #9
    tkdmom96
    Senior Veteran
     
    Join Date: Feb 2004
    Posts: 679
    tkdmom96 HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 02-10-2004, 08:52 PM   #10
    tkdmom96
    Senior Veteran
     
    Join Date: Feb 2004
    Posts: 679
    tkdmom96 HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 02-22-2004, 01:13 AM   #11
    Phoebe
    Inactive
     
    Join Date: Oct 2002
    Location: USA
    Posts: 292
    Phoebe HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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'

     
    Old 02-22-2004, 09:55 AM   #12
    tkdmom96
    Senior Veteran
     
    Join Date: Feb 2004
    Posts: 679
    tkdmom96 HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 02-22-2004, 10:21 AM   #13
    Phoebe
    Inactive
     
    Join Date: Oct 2002
    Location: USA
    Posts: 292
    Phoebe HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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'

     
    Old 02-24-2004, 09:32 PM   #14
    Phoebe
    Inactive
     
    Join Date: Oct 2002
    Location: USA
    Posts: 292
    Phoebe HB User
    Smile Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    Quote:
    Originally Posted by 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'

    Last edited by Phoebe; 02-24-2004 at 09:33 PM.

     
    Old 02-25-2004, 08:08 AM   #15
    tkdmom96
    Senior Veteran
     
    Join Date: Feb 2004
    Posts: 679
    tkdmom96 HB User
    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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!

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Uncontrollable/Elevated Dilantin Levels SUZYQ11 Epilepsy 17 11-30-2007 09:25 AM
    Mesial Temporal Lobe Screlosis Labs-R-4-Me Epilepsy 12 04-20-2005 02:48 PM
    No more seizures and abnormal EEG gavman Epilepsy 6 05-06-2003 12:17 PM
    epileptologist vs. neurologists kimber27 Neurology 2 01-04-2002 06:52 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    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




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 06:54 AM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!