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Old 09-18-2002, 06:08 PM   #1
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Unhappy Bad Results :(

I just got off the phone with my doctor after a 30 min conversation. We were talking about the PetScan test I took three weeks ago. He said that the scan found some activity on my temporal lobe which did not correlate with my MRI or my Tilemitry testing that showed activities on my frontal lobe. I feel like I have lost hope for surgery now.

I am 26 and have had seizures since I was 9 months from a head injury/feaver that later in the eavening resulted in a 3 day coma. When I woke up, I was diagnosed as epileptic. I have had seizures for so long and hoped for one day that I will be Seizure FREE! Now, I don't have that much hope to hold on anymore. I will still try to see another doctor at UCLA which is one of the best hospitals in the country and only two hours away.

My doctor is going to see when the last MRI was taken to consider another one soon. I tried asking why the test don't coorilate with eachother, and there was really no explanation which only frustrated me more. My doc said that I should just be happy that all the parts to my brain work normaly and I am functioning very well, and that if I had a surgery, some of that normality could change since they would have to take a chunk of my brain out that could result with possible handicap, or mental retardation. He mentioned the research drug therapy, and I wasn't so sure about those. I didn't want to feel like a guiney pig. He also mentioned the vagus nerve system, but didn't think that it would work well with the type of seizures I have. I have complex partial nocturnal seizures and they haven't changed for over 15 years now. I guess I am going to have to accept the fact that I am one of the unfortunate ones who are unlucky. I am going to start doing some research into my hospital medical records at 9 months. The Doctor doing his fellowship with my doctor who called me today asked if I had a brain infection at 9 months possibly caused by my feaver? I wasn't sure about that but became very curious.

AngelDust
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Old 09-18-2002, 10:29 PM   #2
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I posted on another thread in response to your question there. I also started the thread re the Great Websites that have very helpful information on them. Another thing, I had high fever with febrile seizures an infant and developed Complex Partial Epilepsy. Most likely that was the cause. Nocturnal seizures were my first, and I had them many years later as well. You may have read my story here already so I won't repeat it. If you wouldn't mind, would you please move your post re facilities from the other thread to this one, and I will move my response to follow yours. That way more people may respond. You can Copy/Paste it here then delete it from the other thread if you want. Tattoo

 
Old 09-19-2002, 12:34 AM   #3
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Hi Tattoo,

Thanks for your reply. I'm afraid I don't understand what you are talking about. I don't know what you mean by "moving my post" to a different thread...I'm fairley new here and I don't really understand how to do what you are asking me to do. I'm sorry if that makes anything difficult, hopefuly if you can explain what I have to do I will be glad to.

AngelDust
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Old 09-19-2002, 01:20 AM   #4
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oh i see what you mean now... just want me to reply to the other thread in here! no prob!

I just finished reading your reply in the other thread and appreciate the information you provided me with. I do recall my doctor saying that it is located on my frontal lobe on the left side. Today, I was told by a doctor that the petscan picked up something in the temporal lobe and not the frontal lobe. I can quote my doctor that he said on one occasion in the office that "my seizure is located on my vision" I guess he was being very vague and not specific with the name of the location of my brain. I do know though, that he has said on many occasions that it is the frontal lobe that my seizure is located on and that it has never changed since the telemetry was done over 3 years ago. Until, further technological research is made, I am considered a "high risk".
I went ahead and did some study on my docotor today, his name is Vicente Iragui, and his wife Evalyn Tecoma who is in the same UCSD clinic and both specialize in epilepsy. Doctor Iragui is a professor and Director of the UCSD Epilepsy Center, has served as a principal investigator for 4 commercially sponsored clinical studies and participating investigator on 3 commercially sponsored clinic studies for epilepsy. this is their website:
[url="http://medicine.ucsd.edu/capabil/Epile192.htm"]http://medicine.ucsd.edu/capabil/Epile192.htm[/url] [url="http://medicine.ucsd.edu/neurosci/thefaculty/iragui.html"]http://medicine.ucsd.edu/neurosci/thefaculty/iragui.html[/url]

sorry, i don't know how to hyperlink the web so if you care to look it up thats their web.

as much of credential that my doctor has and the respect that he gets in that hospital. I feel that I need to just try a different doctor for second opinion, just like you did. I don't want to throw away most of my life and never look back to say that I never tried searching for the possibility of answers. I don't want to go on with a question mark on my head of "what if?" what if I tried searching for a different doctor for only a second opinion. The doctor who I spoke with who is doing his fellowship at the UCSD, told me that it would be a good idea for me to go and get a second opinion and to try UCLA or UCSF, he thought that it would be a better idea to go to a hospital that is closer rather than flying to Georgia. Besides those hospitals are one of the 20 best hospitals in the country along with your MCG. I will do some research with those hospitals and check with my insurance too. I will keep you posted.

AngelDust
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Old 09-19-2002, 08:08 AM   #5
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Please know that titles like Centers of Excellence, Best Hospitals, etc, etc are commercials and No more!. That has nothing to do with the quality of care at all! Read the thread re Looking for a Doc and Guidelines with the links in it. You mentioned Clinical Research. My first facility was heavily involved in research as well. In fact, it was the Priority. I wasn't. I was a lab rat for their students. That's the reason for the need for a second opinion in my case. Residents which are in essence still Students were managing my care. My doc had left town. Students make mistakes. After all, they are students. You also mentioned that someone was doing their Fellowship. That means that he hasn't completed it yet and is still learning. The Epleptologist has already completed it. I refuse to allow myself to be a learning tool for a student. Been there! Done that! I require thorough care. Nothing less. GOOD LUCK! Tattoo

 
Old 09-21-2002, 08:15 AM   #6
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Hello,

You are not the only one who feels that way. I to think I'm fighting a loosing battle.
I'm not optamistic on what the doctor is going to tell me next.

------------------
Sincerely, Victor



[This message has been edited by victor (edited 09-21-2002).]
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Sincerely, Victor

 
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