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Bilateral Mesial Temporal Sclerosis: Temporal Lobectomy Surgery?????

Hi,

 Is there anyone else out there who has been diagnosed with Bilateral Mesial Temporal Sclerosis? If so, has your neuro suggested surgery?

 

Thank you

 

Comments

Hi again, Maye I should

Hi again,

Maye I should have simply asked if there is anyone else out there who has Bilateral MTS? Original diagnosis over 10 years ago, many great years of only minimal seizures, but in the last year, 3 "status" tonic clonic seizures, at least over 5 simple partial daily, and complex partial. Changed meds, added more meds, now going thru the testing for surgery....only thing is I can't find anyone else with "bilateral"mts.... only "unilateral"(one sided) mts....any help is appreciated:)  Is there any "success stories" you can share?

=) Maybe my story can help you =)

I just had surgery at UAB. I have had epilepsy since I was 10 months old. I am now 20 years old. Originally my doctors thought I had bilateral temporal lobe epilepsy. I had around four or five partial complex seizures a month. I had around 3 grand mal seizures about two years ago. I have tried about every seizure meds there is. My doctors decided that I need to go in and have bilateral depth electrodes put in my temporal lobes, so they could see EXACTLY where my seizures are originating. Sometimes the hair, skin, muscle, and bone can mess up the EEG readings. During my first VEEG study the eeg showed seizure activity in both sides. When I went in to the hospital and had the depth electrodes placed, I had continuous seizure activity in my right temporal lobe. I ended up having 5 seizures in two days. After looking at my seizure activity from the depth electrodes, my doctors are also thinking that I had been having continuous activity (from the time I was diagnosed until I had my surgery), which is what made me feel bad ALL the time. =(  Anyway, the depth electrodes proved to my doctors that my seizures were coming from the right side, not bilateral. There were some times when I showed a little bit of activity on my left, but my doc thought it was where seizure activity was crossing over to my other lobe. I went in on October 24, 2007 for depth electrodes and I had right temporal lobectomy on October 26. My path report come back that I had mesial temporal and hippocampal sclerosis. It is something that scar tissue is what has ruined my life since I was a baby. I have been about three months without seizures, and I have reduced my meds a little bit. I am hoping that by removing that little bit of scar tissue, I can get on with my life and stop having seizures. Maybe you need to think about talking to your neurologist and see if the depth electrodes is something you can benefit from.

I

Thank you so much for your answer:) Can I ask if you were actually diagnosed (as I've been, over many many years via MRI & now PET Scan) with bilateral mesial temporal sclerosis? After so many MRI's (since the age of 20 months, when I had my first seizure-a "complex febrile" tonic clonic seizure which lasted 2&1/2 hours and then began again 15 minutes later to go another 2 hours!) showing the scarring and shrinkage of the temporal lobes,at least this is what the drs always have said, they're now saying that I am only a candidate for surgery if the seizures are only coming from one side. But, how is that possible if I have the same scarring and shrinkage on both sides?The also want to put the grids in- after the wada test if I pass, and then it would be done a week before surgery. It definitely makes me feel better to know that someone who has bilateral mts had the surgery! Thank you again, & any help/advice is appreciated:)

 

Re: You are welcome

My MRI, PET, and CT scans did not show much. It showed that my LTL was kind of smaller than my RTL. When my path report came back it showed scarring on my right side. I also had a complex-partial febrile seizure when I was 10 months old. My seizure lasted about 2 hrs and was broken by Ativan. My seizures decreased for about 5 years and then started again until I was around eight. They stopped and then started again when I was 17. My doc said that when I had my febrile seizure it could have caused the scarring due to the fact the brain was not COMPLETELY developed. He also said that the reason they stopped then was because the brain was in a position where it did not cause them. He also said that the brain kind of shifts around at those ages which could cause them to flare back up. I went through so many tests (numerous CTs and MRIs, WADA test with angiogram, MEG scan, PET scan, Neuropsyc. evaluation, VEEG, depth electrodes, and finally made it the surgery). I have gone three months exactly and have not had anymore seizures. I have done the things that caused them (looked at police lights; I went about three days with barely any sleep; I have hyperventilated; etc). My memory has actually improved. =) I just hope your's can turn out as good as mine has. Think positive. If you cannot have the surgery, ask about a VNS or the Neuropace (it is a kind of new device). Best of luck. Keep touch and tell me how everything goes.

Pan_06@bellsouth.net

Bilateral mesial temporal sclerosis

I have come across this, 10 years after the post. My son has BMTS. It has been downgraded from deteriorating BMTS, so theres that. We are currently working with Mayo Clinic in Rochester and he is still not a candidate for surgery. He is, of course, drug resistant but, we currently got them back under control with upping his new wonder drug ONFI by 5mg daily. Other options are on the table as well, for the future but ,not surgery. After all this time and you happen to see this, what has happened, changed, not changed? How are you doing, coping, getting along?

Re: Hope this helps

I too have bilateral mesial temporal lobe sclerosis and in a months time i'm having the vns device fitted. I don't know anyone else who has this condition.

I've had scans showing where the problems lie. I was diagnosed five years ago but apparently i have had the problem since birth. They have tried me on every drug available but this condition is not fully controllable with medication.

My consultant discussed the possibility of surgery with me but he thinks it would be too dangerous as they cannot tell which side is worse. The vns doesn't have a great success rate at the best of times. I'll know more when i've spoken to my neurosurgeon.

The best advice i can give is take charge, tell your consultant what you want to happen and don't be messed around. Get straight answers, I didn't in the beginning and it caused a lot of problems for me.

Surgery is a last resort, I don't know what life is like for you but i share your condition. Surgery can change your personality, memory (yeah i know that's not great anyway!). Think hard before you make that decision

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