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

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    Old 02-25-2004, 10:17 PM   #16
    Phoebe
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    Smile Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

    Last edited by Phoebe; 02-25-2004 at 10:21 PM.

     
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    Old 02-26-2004, 12:53 PM   #17
    tkdmom96
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    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 02-26-2004, 04:57 PM   #18
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    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)

     
    Old 02-27-2004, 10:42 AM   #19
    tkdmom96
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    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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!

    Last edited by tkdmom96; 02-27-2004 at 11:06 AM.

     
    Old 03-04-2004, 07:47 AM   #20
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    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

    Last edited by Phoebe; 03-04-2004 at 09:35 AM. Reason: Please carefully read, know and follow the Healthboards.com Policies and Guidelines. Click on FAQ at the top left of this page. Thank you!

     
    Old 03-04-2004, 12:30 PM   #21
    tkdmom96
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    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 03-04-2004, 02:43 PM   #22
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    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 03-05-2004, 12:03 PM   #23
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    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    Thank you...

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

     
    Old 03-18-2004, 04:12 PM   #24
    tkdmom96
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    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 03-19-2004, 01:20 PM   #25
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    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 03-21-2004, 01:49 PM   #26
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    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 03-24-2004, 12:21 PM   #27
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    Re: EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

    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

     
    Old 03-24-2004, 05:33 PM   #28
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    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

     
    Old 03-29-2004, 04:06 PM   #29
    tkdmom96
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    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

     
    Old 03-30-2004, 03:56 PM   #30
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    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

     
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