Anyone had a left temporal lobectomy? I know there are a number that have had the right but I need to know about left which deals with motor functions.
Quick recap on me
I started having seizures at 15. They started as absence seizures, then progressed to complex partial seizures, and are now showing signs of starting to progress to grand-mal. They are not complete grand-mal yet but are definatley heading there. In addition to increasing in severeity they have increased in frequency. I wasn't even having monthly seizures to begin with and I have now had as many as 45/week. I have been on/off numerous AED's which if they did anything it was make things worse not better. The only time family has had to call squad for seizures was when I was on the meds. I have had to postpone college due to lack of brain function/memory/recollection and am on complete disability which I hate. I want to go back to college and get my BSN and work, not be stuck on disability. I had video EEG, WADA, PET scan, MRI, psychological evaluation, invasive monitoring, etc. looking into surgery about 5 years ago and seizures showed up on both sides but doctors suspect that they are all coming from the left but somewhere deep such as the hippocampus and the electordes on the right just picked it up first because of how deep they were originating. At that point there was no way to test to find out so I was told there was nothing they could do. We also know that the majority of my seizures are hormone triggered. It is very rare for me to have a seizure if I'm not at least spotting. My horomens/cycles have been crazy and irregular since I was 15 which is the same time the seizures started. I have been on and off different birth control meds trying to regulate my cycle and some helped seizures otheres made them worse. I am now on progesterone only and it has helped more than anything but my seizures are still very out of control and progressing.
Where things are now:
I am now getting ready to be readmitted to the EMU (epilepsy monitoring unit) for video EEG, MRI, SPECT scan, etc. to re-evaluate my surgical options. They have came out with a new form of monitoring called SEEG that can monitor deeper in the brain and hopefully find out for sure if they are really all coming from the left temporal lobe or not and if so what the risks are of removing it for me. We know I have Mesial Temporal Sclerosis in the left temporal lobe which is why they suspect that they are really all coming form there. If they are not all coming from the left temporal lobe my doc is recommending RNS neurostimulator which, put simply, is a pacemaker for the brain. It is currently not FDA approved but is expected to be approved the first quarter of 2011 which means anytime.
I know a lot about what the different parts of the brain are responsible for and know there is a lot at risk dealing with the left temporal lobe, especially when it is the dominant one which it is for me, so I wanting info. from someone that has been there.
Any help/info. is appreciated.
cardshark
P.S. Sorry it is so long!
Hello Cardshark,
I'm sorry about your struggles. I understand some of them. I also have seizures due to a TMI injury when I was 18 yrs old (I am 40 now). The injury was in my left temporal lobe and neurologist says they are complex partial seizures. In the last year I feel like my symptoms are changing. I'm now getting body jerks in the evening... and more seizures. Last weekend when I was falling asleep I got a rather scary one. It felt like an electrical shock. I think it was just for a few seconds, but then I was tingling all over. This was the first time I every got one like that.
Are any of your seizures like that?? You said you have had seizures since your were 15. How old are you now?? My neurologist has told me about some sort of implant as a possiblity if I am interested. He said I am a candidate since several meds have not been fully successful.
I hope you will post how things went at the EMU. My thots are with you...
Hi,
My daughter Bonnie has had epilepsy since she was 7 (diagnosed then but had it longer), she is now 20.
She originally had focal partial, then simple complex that became generalized, from the frontal lobe.
Now we find out she has outgrown that kind and has a tumor which is causing seizures in the left mesial temporal lobe (what luck!). At first they thought it was mesial temporal sclerosis, then discovered it was a tumor. We just returned from the hospital after 4 days of having grand mal seizures nightly during monituring. Her tongue is really bitten up! Any suggestions on relieving the pain? She is scheduled for surgery June 13 (tentively).
She had an fMRI which gave them so much info the surgery can be cut from 2 part to a 1 part surgery!
The neuro said they were going to stay away from the language during surgery. She also said Bonnie is all left sided!
Bonnie also is having trouble in college, harder to learn, memory, etc. Hopefully this will help! Neuro said 80% cure, 60%-80% but she feels closer to 80%.
I pray it is.
I wish you well, after her surgery I will update you on more info.
Hello Cardshark,
I'm sorry about your struggles. I understand some of them. I also have seizures due to a TMI injury when I was 18 yrs old (I am 40 now). The injury was in my left temporal lobe and neurologist says they are complex partial seizures. In the last year I feel like my symptoms are changing. I'm now getting body jerks in the evening... and more seizures. Last weekend when I was falling asleep I got a rather scary one. It felt like an electrical shock. I think it was just for a few seconds, but then I was tingling all over. This was the first time I every got one like that.
Are any of your seizures like that?? You said you have had seizures since your were 15. How old are you now?? My neurologist has told me about some sort of implant as a possiblity if I am interested. He said I am a candidate since several meds have not been fully successful.
I hope you will post how things went at the EMU. My thots are with you...
I am going on 30. The implant the doc told you about is probably the RNS or else the VNS. Last I checked the RNS still hasn't been FDA approved. I had my video EEG monitoring, MRI, SPECT scan, psych evaluation, etc. in March and was scheduled to get the results the end of April and my doc's office called like 3 days before my appointment and told me I was a "complicated case" and the doc needed more time to go over everything and was calling to reschedule my appointment. Here we are a month later and haven't had the appointment yet and it has been 2 months since the tests were done. I am supposed to go and find out doc's recommendation on Tuesday.
I had my left temporal lobe removed 15 years ago, and I no longer had auras nor seizures. I am close to completing my Masters degree with a 3.85 GPA, so things are still possible despite the time I had to take off following the surgical procedure. I also discontinued all epileptic medications about 14 years ago as well.
I would do as I did and research things for yourself. I continually had questions prior to the procedure which were answered quickly and I was comfortable having this procedure done. I haven't been on here for awhile, and noticed this was posted in March, so hopefully, if you had the procedure, all went well.
Last edited by Looking4aAnswer; 06-01-2011 at 02:09 PM.
I had my left temporal lobe removed 15 years ago, and I no longer had auras nor seizures. I am close to completing my Masters degree with a 3.85 GPA, so things are still possible despite the time I had to take off following the surgical procedure. I also discontinued all epileptic medications about 14 years ago as well.
I would do as I did and research things for yourself. I continually had questions prior to the procedure which were answered quickly and I was comfortable having this procedure done. I haven't been on here for awhile, and noticed this was posted in March, so hopefully, if you had the procedure, all went well.
Thank you for posting. It is nice to hear from someone that has had such great success from surgery. I do research and have questions/info ready. I am waiting for doctors office to call and schedule me for more tests/appts. (MEG, repeat PET scan, and surgery consult for SEEG). They are waiting for insurance approval before they schedule the tests. It is still unclear if all are coming from the left or just the majority which is why my doc has ordered the SEEG (depth monitoring).
The following user gives a hug of support to cardshark: ww1989 (06-01-2011)
left temporal lobectomy 
