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Epilepsy and JPA Brain Tumor

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Posted 11/8/2006 11:14 PM (GMT 0)

Hi I am new here and I hope someone can me some information if they have been through the samething my daughter is going through.

My Daughters name is Victoria she is 10 now. We go to New York Columbia Presbyterian Hospital. Her Neuro Dr. is Alison Pack ,Surgeon is Dr. Neil A. Feldstein(you can do a search on his name to get his information) the second surgeon that will join Dr Feldstein this time is Dr. Robert
Goodman.

Victoria was four years old when she had her first seizure, nothing was done for the first one. Four year later she had another one. We went to
Westchester Medical Center. They did CT Scan, found nothing,EEG nothing to talk about, they put her on Tegretol. We then went to New York
Columbia for a second opion, they orderd a MRI. The first MRI came back showing a bright spot so we had to go back for another with contast to
see what it was. Victoria was still having auras with seeing colors being on the medicene so they change it to Lamictal and it was still the
same . The doctors said that the will operate. On June 23,2004 Victoria was operated,everything went well. When they did the MRI after surgery
it was still showing a bright area. The doctors said it could be scar tissue or residule tumor, but the only way to confrim it would be to go back in. The doctor was giving us reassurance that he felt comfortable of what he took out,said though sometimes brain tissue could look good
but it's not , but that we would keep a close eye on it. Victoria was going for her MRI's and there was no change, she was seizure free for
over 2 years. The doctors were talking about weening her off her Lamictal in September ,we were so happy. Then on August 23rd she had a seizure. We went to the hospital they did another MRI, she was due for her next one in Sept. The MRI showed some regrowth in the occipital lobe. Victoria is back to seeing the colors and vision they upped her medicene . She was put in the hospital for 10 days on EEG and they
capture some activity saying it is coming form the same area where the tumor is. They want to make sure that they don't miss anything this
time. She is schedule for a intercranial with brain leads on November 10th and when they get the data they need they schedule her next operation to resect everything on November 17th. We went to Memorial Sloan Kettring in New York also and the said that they would do the same thing that Columbia is doing,that gave me reassurance . Although she will either lose a quadrant or her whole left periferal vision. I'm really scared ,but she is such a tropper. I would like to know if anyone  had a intercranial with leads ? Does anyone know Dr. Robert Goodman ?

Posted 11/19/2006 3:21 AM (GMT 0)

My daughter had her surgery on Friday Nov. 10th to have the intercranial with leads done, it was about a six hour procedure. She was put into ICU after and the data started to register on the seizures she was starting to have. On Saturday the doctors came in to say that they were getting good data but that it was on the edge of were the leads were and that they would have to go back in to put more leads in.That took place on Monday Nov. 13th another six hour procedure. She was back in ICU stayed over night and in a regular room on Tuesday. They lowered her medication some because the seizure activity slowed down. She was very uncomfortable, did not want to move her head. She had a partial seizure and the doctors received the information they wanted to get. She had a vision test done on Wednesday the 15th and they also tried to stimulate some of the leads in her brain. The stimulation was bringing on a seizure so they stopped it. That night she got very sick and kept throwing up, it was awful. In the morning she was running a slight fever,but the surgery still went on. She went in Thursday the 16th morning at 9:00 AM and was done at 3:15 pm. I was so frightened wondering if the fever would get worse, that infection was setting in, that when she opened her eyes that she would be frightend if she lost any of her sight. I had so many different things running through my mind and it all turned out wonderful. The doctors said that if they did not do the intercranial the results might not have been the same, it helped tremendously. It was a long hall and having three surgeries in less then a week was such a toll on Victoria, but she was such a trooper. She has been through so much and today is Saturday the 18th and she is up and about and feeling more herself. We are waiting for a MRI, the doctors say that the percent of her being seizure free is 50 to 70  percent. We hope it will never happen again and are so happy that she did not lose any eye sight. Thank You Dr Feldstein,Dr Goodman, Dr Gilliam and Dr.Pack.

Posted 11/19/2006 4:23 PM (GMT 0)

DEAR LOU LOU:

MY you are a strong mom,god bless you and Victoria. I sure hope the best for you and your daughter. SURGERY seems like a strong fight to correct seizures,you took a huge chance,and I"ll keep your family in prayer.

            DELLA

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