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    Info regarding surgery
    dude8045 posted:
    To whom it may concern.I've been dealing with seizures and epilepsy since i was a yngr boy.I'm now 31 and none of the meds have been working.After yrs of drs and many test and additional meds.I'm now being told that surgery could be a good option for me.Is there anyone out there who's had epilepsy surgery?And if so is it a success and what all does it consist of.I'm torn as to what to do without knowing more in depth info.Any and all would be greatly appreciated.Thanks in advance
    clarinet2 responded:
    Hello dude, we are very happy that you are asking questions regarding the possibility of surgery. I know four other people who have had lobectomies and that also includes myself. My surgery is a complete success, seizure free for 10 years. I still take two medications because my case was complicated, but to not have seizures started a new journey which includes reaching out to others who need support.

    I was having seizures for 26 years before the option of surgery opened up. I decided to look into the opportunity after getting more information from my doctors and asking lots of questions.

    I am sure that you will also hear from friend Angie soon!

    saxofone1 responded:
    Hello dude,

    My name is angie. I had a partial right lobectomy in April '02.

    I was diagnosed with ep in '75, a week before turning 14.

    Prior to the lobectomy, I had gone through many meds, combo of meds, dosages of meds , and every test that was available.

    My seizures had gotten to the point where the meds were no longer effective.

    I am quite happy with the outcome of my surgery. My seizures have been reduced by 90-95%. I still have occasional seizures(I had 3 this past year). No big deal for me cause I used to have as many as 20/mo.

    My memory is much better. My daily meds have reduced from 4 to only 2(Keppra XR and Oxcarbazepine,aka Trileptal).

    There are many of us on this site who have had success with the surgery. A young lady texted me about you cause she was having trouble logging in. Her name is Dana, screen name Clarinet2. She had a lobectomy the year before me. We had the same med team when I lived in Mpls. Please look for her reply soon.

    In the "Search This Community" box, enter WHAT MOVED YOU TO HAVE SURGERY? or simply read my profile story(left click my picture) for more info about me.

    I went through a couple of tests to determine the location of origin of my seizures. The test were simple and very helpful. The WADA was the most interesting. That involved putting on side of the brain to sleep while testing the alert side. The doctors wanted to locate where my speech, movement, memory were located in regards to where the seizures started from. No pain.

    Also, I had a grid placement done. This involved cutting into the skull and laying a grid upon the area of the brain that was suspected of being seizures active. This way the docs found the beginning site(aka focal point)

    It's been almost 10 years and I'm moving right along. No regrets, great satisfaction.

    Hope this helps. Look for Clarinet2(Dana) to respond to you too. Ask us everything, anything, whatever concerns you have. We are here.

    dude8045 replied to clarinet2's response:
    Thanks Dana,i'm Jason.And the info that u and Angie have supplied has been a big help.
    dude8045 replied to saxofone1's response:
    Hi Angie i'm Jason.Sounds alot like my situation is alot like urs was.To my knowledge they have said that the whole brain was being affected.And filled with scar tissue.But worse was on the right side located in the rear temporal lobe behind my right ear.As far as the operation itself what all does it consist of?And what's the overall likelihood of good quality of life afterwards.Seeing i'm currently disabled and unable to drive and work.Sry for all the questions was just curious
    saxofone1 replied to dude8045's response:
    Hi dude,

    You are not disabled!! You have a medical disability which might affect some of your choices. OK?

    The surgery is to remove the "problem area" of the brain.

    The skull is opened and the grid is layed in place. The skull is then fitted back in place and heavily wrapped in bandages. The wires from the grid are held in place this way. Looks like a weave of wires coming out from under the bandages. I took plenty pics.

    Once the "spot" has been located, the skull is re-opened and the spot cut out. The skull is stabled together once again and wrapped in bandages.

    Now it's time to move in to recovery. There you will be watched, most likely on camera, until the med team releases you. The stables will be removed at a later time.

    What I have just descriped is my experience. I was there for 12 days. The first part of my stay was to observe and record seizure activity. Once the "spot" was located, surgery was scheduled followed by post-surgical observation.

    Everyone's hosp stay will vary. The length of stay will depend on how soon the necessary info is gathered(# of seizures observed, is there a focal pt?, post-time needed).

    My medical leave was extended because it took me a while longer to recup. Tired and still a bit confused. This was my choice.

    When I felt comfortable to return to work, I was unable to find a site that gave me enough hrs for med cov and that I could get to(Ihave never driven). I decided to do volunteer work at a school that I had once worked at. GOOD CALL ON MY PART.

    My life has been full and happy since the surgery. I am able to do as I would like. If Vegas would take me as a volunteer with the schools, I'd be very happy to do ith again. Kids are a great source of strengh and inspiration.

    Dana has also had a full life afterwards.

    The only problem I had after surgery was a broken ankle. LOL!!! I slipped on some black ice when in Mpls. That hurt!!!

    Don't ever worry about asking questions. The concern lies with the ones not asked. "I wonder if ...Should I ask?..."

    Hope this has answered some of your questions regarding the procedure. Ask away!!!

    hula_dancer73 responded:
    was not a candidate for brain surgery because I had 3 lesions onmy left Temporal Lobe, and getting rid of one wasm't going solve the problem.

    So I had VNS implant surgery iinstead.

    I can not help with the brain surgery although I was iiiin oneEMU and they stopped short of thee WADA test and tah was the end of that.

    Sorry I could not help this time around.

    Hula_dancer73 (aka Hawiian Girl)
    clarinet2 replied to dude8045's response:
    Jason, my seizure disorder was very similar to yours and Angies. Seizures started when I was about 11 years old back in the mid 1970's . The seizures started from multiple sides of the brain, but the majority of the seizures started from the side that could have the surgery.

    I had to fight to find a job within my capability, but i did not give up and just took whatever part time, temporary and volunteer jobs I could find.

    I was lucky to find a full time job back in 1986 prior to my surgery at the Minneapolis VA Medical Canter. It was not my first choice, but I applied and did not give up. I did have some issues in the beginning with discrimination due to the seizures. I contaced the local Epilepsy Foundation and the VA union helped me to find another job in the same hospital that was in an area with much better staff who understood seizures better and could handle the issue without panic.

    I never was allowed to drive just like you, but I did not let that stop me from getting around. In 1986 I moved from my small home town in Wisconsin to the Minneapolis area by myself . The transit system was much better in the Minneapolis area and there was a metromobility bus and van service for citizens who could not drive due to medical issues.

    Like Angie I did not think about myself as being handicapped because no one would even know that I had a seizure disorder until I told them or had a seizure around them.

    After my surgery back in 2001 I did learn to drive at the age of 40, but it is very expensive with the price of gas, insurance and car maintenance. I know two other friends who had brain surgery, but decided not to learn to drive because they had adapted their lives without a car.

    I know that giving up my driving when I become older will not be difficult as it is for some people because I know what my options will be to get around for appointments and other activities.

    Keep moving forward and we hope that you can connect through your doctor with other citizens who have had brain surgery for seizures to help answer your questions and guide you through your journey.

    saxofone1 replied to clarinet2's response:
    Hi Jason,

    How are things going with you?

    Drop us an update when you get the chance.

    Think about starting a log for questions that you have for us and your docs.

    Have a good day,

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