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Temporal lobe tumor surgery questions

Tue, 02/27/2007 - 19:53
When I was in high school, I thought I was loosing my mind. I started having reoccuring instances when I would feel an intense deja vu and experience hallucinations, hear voices, but wouldn't remember anything afterwards. My heart would beat in my ears, I would move my right arm strangely because it would feel like it has fallen asleep. My face and chest would turn bright red. I would be unable to speak and if I did - it would be gibberish. I would get nauseous and get a massive migraine after this was done. These "attacks" were frequent and there was nothing specific that brought them on - eventually my family noticed. I was afraid to tell them because I thought they'd think I was crazy. After I was taken to a general doctor, she told me I was having "anxiety attacks" and sent me to a variety of specialists. A cardiologist diagnosed me with mild mitral valve prolapse. An MRI found an arachnoid cyst in my temporal lobe, and i was told both were harmless conditions that I could live with and were not causing my "panic attacks". I was also sent to a psychologist for cognitive therapy, but I only lasted one visit - I couldn't see how that could help me. Currently, I'm 26 and I have been recently hospitalized a few times from fainting (all over the city) and not being able to remember anything for about an hour. I was never admitted, and released each time from Emergency being told that I was "fine" and should see a psychologist. The fourth time it happened at work (at a meeting) and the on-lookers told me that I looked like I was having a seizure. I was finally sent to a neurologist and was diagnosed with temporal lobe epilepsy. I found out that I was having grand mal seizures. I also found out that the frequent "anxiety attacks" I was having over the past decade (diagnosed as such by the many doctors I saw) were actually partial complex seizures and not anxiety attacks at all. I also found out that the anachroid cyst was misdiagnosed as well and is actually a slow-growing benign tumor, currently the size of a golf ball, in my temporal lobe. After an EEG proved that the seizures were coming from my temporal lobe, I was put on Keppra and have not had any seizures in the past month. I now have the option of removing the tumor and seeing whether the epilleptic seizures stop or waiting a few more years and to see if it will get worse as the tumor grows larger. Another option is to have the surgery now and additional tests/surgery while I'm at it, where electrodes are implanted in my brain and the exact spot where the seizures are coming from is pinpointed (or so I was told), so that can be removed as well. I was told by more than one doctor that most likely the seizures will not go away after surgery. I don't know what to do. This has had a HUGE impact on my life, personal and professional, in the past ten years and now. Needless to say, I'm scared. Very few people know about this. If anyone has any suggestions/information, I would very much appreciate them. Has anyone had temporal lobe/tumor surgery? Where does one go from here? Thank you!

Comments

Re: Temporal lobe tumor surgery questions

Submitted by randa5 on Fri, 2012-08-17 - 19:59
Hi Alexis, I came across your post - it is now 2012 and not sure where you are at with your surgery decision. I just wanted to let you know that last November my 16 year old son had surgery to remove a benign tumour in his left temporal lobe - he was having seizures and a MRI discovered the tumour. His post-surgery recovery has been excellent - he still has to be on dilantin for a year post-op but he is back to "normal" - no more seizures and feeling great. God-willing, after his 1 year postop checkup, he will get off the dilantin and carry on with his life as if this was just a small blip. My point of writing, is you need to investigate whether the removal of the tumour will bring you back to "normal" and improve your quality of life. I'm sorry to hear you have had so much confusion with all the doctors. If you have any questions for me please do not hesitate to ask.

Re: Temporal lobe tumor surgery questions

Submitted by Lanoue on Thu, 2008-06-12 - 23:09
I had a tumor removed my left temporal lobe 7 years ago.  A very rare tumor, a gangliocytoma. I was 37 years old when I had the surgery.  The left side of my face was numb which made me go to the Dr.  Luckily, I have family in the medical field and my mother-in-law personally knew the best neurosurgeon in Hershey Med Center.   I was the 2nd rarest case he had in 40 yrs.  I should have been having seizures, but I wasn't.  The only significant problem I have now is short term memory problems.  Amy   Acslanoue@aol.com

Re: Temporal lobe tumor surgery questions

Submitted by Dany on Wed, 2012-08-22 - 05:32
Hi Alexis, I'm Dany, 38 years old. I underwent a Left temporal Lobectomy 2 months ago. I suffered from seizures since I was 2 years old but it was misdiagnosed till 4 years ago. Its main cause was the left Hippocampus Sclerosis. I've been on a cocktail of medications, including Keppra. However, I was drug resistant and the worst was that I developped a very severe allergic reaction (Carbamazepine) and the only and last option was the surgery. I was terrified about the outcome, especially as I am a specialist nurse and aware about all the benefits and disadvantages of such a major surgery. In the end I said to myself that I need to fight the good fight to win it!!! The neurosurgeon and his team is the best ever... and the surgery has been such a huge victory. I am still recovered slowly but surely. So far no seizures at all!!! which is a massive freedom for me!!! I would encourage you to go for it and you will be free like the dove!! Wishing you good luck. You'll be in my prayers and thoughts. Dany xx

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