HI Yvonne,

So good to hear from you! I know how tough life can be when you are diagnosed with this disorder, and it is to be expected that family and friends would feel overwhelmed and frustrated as well. Everyone's lives become turned upside-down when epilepsy comes to join the party! :) I am sorry to hear about the problems with raising your children, I am not a mother but can only imagine how hard that must be for you. But, you have to know that you are doing the best service to them by providing a safe and stable place to grow and thrive. They are too young to fully understand, but one day your kids will thank you for caring enough about them to keep them out of harm's way.

 My seizures, like yours, are "refractory"- in medical terms, this means unable to be controlled with medication. My first Doctor tried me on four different meds, and each time we were hopeful that we would happen upon the "magic" concoction. However, this wasn't the case, and I am so happy that I had the opportunity to explore my other means of treatment. There are so many blessings to be found, look at the silver lining! You have an awesome Clinic close to you that has agreed to help you- and you have parents who will support you all the way! I am sorry to hear that your husband is having difficulties adjusting, but that isn't necessarily his fault. In any diagnosis like this, friends and family go through the "greiving" process just like we do. Life, as it was known, is turned all around and in a sense, EVERYone has to start over. He may be asking himself "Why ME?" "Why MY wife?" or "This isn't my problem, this isn't fair that MY life is now completely changed." I'm sure all of these thoughts have crossed his mind.. BUT this does NOT mean he loves you any less or blames you for your seizures-they are something you have no control over. What you CAN control is YOUR reaction to your diagnosis. Be proactive, be positive, and be appreciative. You have to take care of your mental state before you can take care of anyone else, husband &kids included. You will need to come to terms with your disease, and this may take time. It sounds like you are starting this process by reaching out to forums like this and asking questions. I am no expert, but I strongly believe in the power of counseling. Whether this is with someone at your church, or a local counseling group, or a clinical psychologist, it is super important that you get a chance to vent your anger, frustration, sadness, and loss in a safe environment with an un-biased listener. I also found that writing in a journal was theraputic for me.. just getting a chance to put my thoughts on paper. It doesn;t have to be sentences, or even full thoughts- just doodle and brainstorm- let your mind do the work. You might be surprised how much better you feel afterwards.

I also recommend bringing someone (friend, husband, parent) to your appointments with you whenever possible. These people can often give insight and extra details to the doctors you will talk to. I found that it helped my boyfriend to feel more appreciated when I ASKED for his help. When he felt needed, and that he could do something to help me and improve our situation, he felt more in control and confident that we could make it. With lots of talking and compromising, we were able to become a united front. Ask your husband specifically for what you need- give him small things that will help him feel important and appreciated, because now he probably feels helpless and is having a hard time watching you become depressed and angry and sick :(  None of this is any fun, but it DOES get easier over time.

Onto the surgery talk.. If your team of neurologists has decided that you are a candidate-don't be scared! There is probably a few more tests and things to be evaluated before going forth with the surgery, but one thing I can tell you is "It was SOO worth it." If i had to go back and do it again, I absolutely would, and if your doctors are suggesting it to you, listen closely and consider your options! For me, it was somewhat of a last resort- I was having 4 or more seizures a day, often at work, and even at home alone, which scared all of my friends and fam just about to death. My doctor told me that if I continued down that path, that things would most liely only get worse. The brain creates "muscle memory", meaning that each time you have another seizure, the likelihood of having another, and a worse, goes up further each time. I knew that this was not a life I could lead, I had so much life ahead of me, as you do!! The doctors will tell you that nothing is a guarantee, and there is a high likelihood that you may have breakthrough seizures afterward, and will probably always take medication. This, though, was better than the situation I was in, and an option I could NOt ignore. I was scared- BRAIN SURGERY?!?! Oh my god! It's not something small, and surgery on the brain is never considered without its high risks (talk to your doc more about that.) My family and I decided to go forth. I spent 8days in the EMU (epilepsy monitoring unit) where I was under close supervision and taken off of my meds in the hope that they could capture a seizure. I had 2 grand mals while in the EMU, and the doctors were able to tak a very close look at what my brain did when I had a seizure. This helped them narrow down the exact spot on my temporal lobe that had all of the activity. My mom was with me for this whole period, and I love her for that! I hope you will find some great support too, I'm sure you will!!  After my evals and reports from the EMU, the doctors were able to be more specific in their surgical plans. I met with my neurosurgeon and he described it all to me. I don't want to be "gory" or go into too many details here, some of that should be left to your doctor to explain. Basically, my skull was opened in a crescent "C" shape, from the center (in line with my nose) and around to just in front of my right ear (yours would be basically opposite.) The incision he made was behind my hairline so that the scar (which was VERY minimal-no one would see it if I didn't point it out) would be hidden in my hair once it grew back. They had to shave that whole side of my head, but luckily I already had a short pixie cut, so whatever!! (I'm a hairstylist :) but my hair grew in wonderfully over my scar. The first part of surgery was the doctors placing EEG electrodes on the actual surface of my brain-this way they could montior even more closely the problem areas, I had some weird-looking wires actually coming out of my skull-looked weirder than it felt though. These were in and monitored for 2weeks. Immediately after, I went back under for part 2 of my procedure.

After they re-opened my skull, they were able to go in and resect(remove) the area that they had targeted. The anesthesia went with no problems, I felt nothing during surgery, and was completely under- they don't keep you awake like in some brain surgeries. The surgeon then closed the skull and placed a small plate of bone over the gap (I have two tiny screws in there-don't even show up in a metal detector). Then that incision was stapled closed. I also had a small "burr hole" on the opposite side of my head where there was a drain tube to prevent fluid biuildup. (That stayed in for about a week.) After the 2nd step in my surgery, I was in the hospital for 1 more full week, then cleared to go home. So, total, I was in hospital for 3 weeks (that was with no complications). My doctor wanted me to be off of work for a minimum of 3 months, and he said some patients 6 months is more ideal. Luckily, my salon was willing to work with me and my clients were accomodated in the meantime. When I went back after the 3rd month, I worked a part-time schedule for another 2mos. My mom and boyfriend were my saints, they helped me make the transition back home. Basically, I just had to take it very easy and rest ALOT. I was on various pain meds, and we figured out the right dosage for me to "stay on top" of the pain. The pain is not fun, I'll tell you that- but otherwise my recovery was more just about taking it easy and letting my body recouperate. I would walk around the mall for a few minutes, or go out to dinner, play games, visit with friends, etc. There were no permanent "side effects"- I didn't have to learn to walk or talk, to feed myself or write my name- nothing major like that. This area of the brain doesn't house any major vital functions like those, so the risks of permanent impairment or disability are very low. But, as they say, there is no "routine" brain surgery, so it is important to know all risks up front. Your doc can explain some more of that to you!

 I could go on and on (and on..and on..) about my particular experience, and I can definitely give you more details as i think of them. I would also advise you to contact your insurance company and find out about your coverage (in-network or out) and decide how this might affect you financially. I can tell you, though, that there is not a price I could place on my experience with surgery. It was an awesome choice that I made, and I hope to help you make the right decision too!! Since Sept '07, I have had 3 seizures ONLY!! (still not perfect, and was hoping to never have another, but in that time, I went a whole year between my last two!) If life continues this way, I will continue to never regret my surgery decision!  Hope I haven't bored you to death with all of this info, just please remember that you are never alone, and things could ALWAYS be worse. (cliche', I know) :) Please stay in contact and let me help you in ANY way that I can. Good luck!!!!*~Stephanie~*

Yvonne,

I have recently been diagnosed with Epilepsy, simple and complex partial seizures, and two grand mals.  It sounds like mine is not as bad as many others I have read here but the effects of them are similar to yours with family.  I too have small kids (4, 5 & 6) and my husband is also having a hard time with the changes and not overly willing to understand it all let alone help (well he will when there is no other option and it is either benefitting him or the kids cry about something), so trust me I know how much it all sucks!  If you ever need to talk or vent or whatever I am here.  BTW I live on the west side about 45 mins from the CCF Main Campus.

I do have a question for you though, who is your doc at the clinic?  I currently see Dr. Foldvery but I am having problems with getting return calls and trying to even get an appointment is next to impossible, even after she told me to follow-up 4-6 weeks after she switched my meds (which was more than 4 wks ago!) they told me the best they could do was the end of August!  I told them that was even further out then the initial July follow-up appointment from my very first visit!  And what about getting my liscence back at the beginning of August-would I have to then wait even longer?  I returned the call and pushed the appointment issue harder and they said the best they could do would be the middle of June but I would receive a call back as to the specific day/time, which was 2 or 3 weeks ago (I forget-thanks to the meds I think, I would know better if I could actually get some answers!) and yet still no such call.  Since this is all new to me and I am learning more and more since the last appt. 3/6/09 I have a lot of questions and I just wish I had a doctor I could see and talk to personally.  I had to call 4 times in tears and terrified with the side effects I was having from the generic Keppra (the name brand is way too expensive and impossible for us to afford right now), I was begging them every time to please help me before I became a headline news story and the first 3 times it went nowhere,until the 4th time (when I mentioned the word suicide-I said "now I know why there are suicide warnings with this med, if I were not stronger I would fear for the worse since I have had the thoughts but thank god for my kids, because of them that is something I would never do and I see why many people have problems with it") they did finally start the switch to generic Lamictal.  Plus not to mention the fact that I have suffered from migraines my whole life and asked what meds I can take for them since the AED's seem to interfere with many other meds, and all she kept telling me was to go to the headache center and see them, and to no surprise they are also booked 6 months out!  Everyone other doc I see tells me the epilepsy neuro doc should be able to give me something for the migraines but after begging I do not think she will.  I do not know if this is just because I have a mild case of Epilepsy or that she is just too busy with other patients or what but I can't take it anymore, I need answers!  Have you ever had any of these problems at the clinic? 

I'm sorry if this just goes on and on but I have found that I am having more and more issues with rambling, memory, etc. lately so I'm sure there are some spelling/gramatical errors in this..lol!  But when it comes to this I feel like I could go on forever until I get all my answers and a better understanding, it's still so new and a little scary for me, not to mention the depression!  It's not good for anyone!

Any advice would be great! 

Thanks and Best Wishes!