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Surgery on the Left Temporal Lobe
Sat, 05/25/2013 - 17:54Hi All,
I am hoping that some of you out there can share your stories with me regarding surgery on the left temporal lobe and the possible side effects.
I am a 30 year old man who was diagnosed with epilepsy when I was 23. I had a couple of full seizures over a 2 month span. Since then, I've been on multiple medications. I've found ones (lamictal and clobazam) that control the full seizures, but I still have approximately 3 simple partial seizures every month. My neurologist has indicated to me that since medication has not solved my seizures, that I should consider surgery. I have been through all the testing (MRI, EEG, PET & SPEC scans....) and am considered a candidate for surgery on the left temporal lobe.
My case of epilepsy is not as severe as many others out there. I am still able to function mostly normally and work as a civil engineer. My memory is not great right now. The doctors are not sure if it is a side effect of the medication I'm on, or if it is due to possible damage that the seizures may be causing. I have been told that there is the possibility that the seizures (that currently originate in one place) may later spread to other areas of the brain as I grow older. Thus, if I am to have surgery, it has been suggested that sooner is likely better than later. However I am worried about the potential side effects of left temporal lobe surgery (possible memory loss, word finding ability, multi-tasking, and visual impairment...). As my case of epilepsy is currently not debilitating, I worry that the side effects of a surgery will not improve my situation. Some of these side effects (especially memory, word finding, and multi-tasking) would definitely affect my job.
Any input you can provide me regarding side effects you have experienced after surgery would be much appreciated. I thank you in advance.
Comments
Re: Surgery on the Left Temporal Lobe
Submitted by bella0809 on Mon, 2013-05-27 - 15:03
Hi Wardy.
I had surgery on the LTL in 2005 and have been seizure-free since then. I usually had simple or complex and they went quickly. The seizures did not motivate me to have the surgery. The memory loss did and post-op, I can say the major problem was side effects of Lamictal. If you have memory issues I would get off it. My speech and memory are better post-op than pre-op because I am off drugs. I can compare the pre-op periods on different meds, the post-op period still on meds (took 5 years to come off slowly) and the post-op period off meds (3 years now). Phenobarbital and Lamictal cause serious cognitive problems. Word finding became a major problem on Lamictal. Weight gain was a problem on Tegretol and Neurontin. I've also changed my diet in the past year and have found it eliminated, fainting, hives, my arm became functional again, my bronchial problems seem to be gone. I reduced foods with histamines and I'm curious as to the similarities of the ketogenic diet, which is for seizures.
Anyway, I recommend the surgery. It's amazing not to have to hide as I did in the past when I was going to seize and the rest of the population is catching up with me with their forgetting names, etc.
If you're looking for surgery, I recommend Dr. Doyle at NYU-Langone Med Center. You should ask anyone you're considering using how many surgeries that you are going to have, have they done, what's their success rate and can you talk to former patients. My yahoo address can be added to my user name if you have any questions.
Ann
Hi Wardy.
I had surgery on the LTL in 2005 and have been seizure-free since then. I usually had simple or complex and they went quickly. The seizures did not motivate me to have the surgery. The memory loss did and post-op, I can say the major problem was side effects of Lamictal. If you have memory issues I would get off it. My speech and memory are better post-op than pre-op because I am off drugs. I can compare the pre-op periods on different meds, the post-op period still on meds (took 5 years to come off slowly) and the post-op period off meds (3 years now). Phenobarbital and Lamictal cause serious cognitive problems. Word finding became a major problem on Lamictal. Weight gain was a problem on Tegretol and Neurontin. I've also changed my diet in the past year and have found it eliminated, fainting, hives, my arm became functional again, my bronchial problems seem to be gone. I reduced foods with histamines and I'm curious as to the similarities of the ketogenic diet, which is for seizures.
Anyway, I recommend the surgery. It's amazing not to have to hide as I did in the past when I was going to seize and the rest of the population is catching up with me with their forgetting names, etc.
If you're looking for surgery, I recommend Dr. Doyle at NYU-Langone Med Center. You should ask anyone you're considering using how many surgeries that you are going to have, have they done, what's their success rate and can you talk to former patients. My yahoo address can be added to my user name if you have any questions.
Ann
Re: Surgery on the Left Temporal Lobe
Submitted by Frank Lee on Mon, 2013-05-27 - 00:43
1. I would think long and hard before having surgery for Left TLE with seizures classified as simple / partial. They are the easiest to live through, compared to the generalized. No medication is guaranteed to prevent seizures, only possibly control them. Likewise, no surgery is guaranteed to prevent seizures; some surgery can actually keep the condition the same or make it even worse. There is no 100% way to solve seizures.
2. I would ask to be given a copy of the MRI (you paid for it). Have a look at where the damage to the brain is and see how serious. If you can continue your job as a civil engineer, you're way above many with the same condition. (The MRI of the brain can be uploaded on your computer from a DVD / CD using free software called DICOM Viewer). Some memory loss is due to the TLE, while some could be due to the medications. If your side effects are so mild that you're wondering if they could get worse after surgery, do not get surgery.
3. Seldom, if ever, have I heard of Left TLE developing into generalized (grand mal) seizures over time. Partial seizures begin at one area of the brain and usually do not spread. If they do spread, it will usually do so from the beginning of your diagnosis with epilepsy. Guessing that they could get worse is not a reason for surgery. You are not a candidate for surgery.
4. You should never see doctors from only one hospital or clinic. You should see at least 2 from different locations. You'll have epilepsy the rest of your life. If anone was ever to consider surgery, they should get examined by a well-known hospital, at the level of a Mayo Clinic. You'll live to be at least another 50 years. I wouldn't take the risk of a botched surgery and have the side effects for half a century.
(grand mal
1. I would think long and hard before having surgery for Left TLE with seizures classified as simple / partial. They are the easiest to live through, compared to the generalized. No medication is guaranteed to prevent seizures, only possibly control them. Likewise, no surgery is guaranteed to prevent seizures; some surgery can actually keep the condition the same or make it even worse. There is no 100% way to solve seizures.
2. I would ask to be given a copy of the MRI (you paid for it). Have a look at where the damage to the brain is and see how serious. If you can continue your job as a civil engineer, you're way above many with the same condition. (The MRI of the brain can be uploaded on your computer from a DVD / CD using free software called DICOM Viewer). Some memory loss is due to the TLE, while some could be due to the medications. If your side effects are so mild that you're wondering if they could get worse after surgery, do not get surgery.
3. Seldom, if ever, have I heard of Left TLE developing into generalized (grand mal) seizures over time. Partial seizures begin at one area of the brain and usually do not spread. If they do spread, it will usually do so from the beginning of your diagnosis with epilepsy. Guessing that they could get worse is not a reason for surgery. You are not a candidate for surgery.
4. You should never see doctors from only one hospital or clinic. You should see at least 2 from different locations. You'll have epilepsy the rest of your life. If anone was ever to consider surgery, they should get examined by a well-known hospital, at the level of a Mayo Clinic. You'll live to be at least another 50 years. I wouldn't take the risk of a botched surgery and have the side effects for half a century.
(grand mal