Mesial temporal sclerosis in epilepsy

Hi @heal33, you'll notice that I changed the title of your discussion to "Mesial temporal sclerosis in epilepsy" to reflect the topic of the discussion. Is this the first time that you've been told about having mesial temporal sclerosis?

I think what your nurse meant to say is "in utero" meaning in the womb (not in vitro). Mesial temporal sclerosis can also happen in early childhood, the first 4 or 5 years, from what I understand. The fall when you were 3 or 4 sounds more likely. Have you had surgery?

Thanks for clarifying things for me (in utero). I had an MRI last October (different doctor) with the same results--mesial temporal sclerosis. I won't see the last doctor who told me to have the second MRI until September. I am going to ask him what he meant about being born with it. I don't agree with that. I think it was a result of the fall which the other doctor told me last fall was the cause.

No, I haven't had surgery. One doctor said I could lose memory which scares me as both my parents had dementia. The first doctor seemed to want me to try laser surgery but then I mentioned maybe it wouldn't work and also was it worth the risk. I have thought of someday going to Mayo for the RNS surgery but not sure of the distance and how many trips I have to make. I get the impression doctors here don't want to do the RNS as they never bring it up. I'm going to ask the doctor in September (he's at a Level 4 epilepsy center) about it. I'm not sure what I'll do. I've had this 40 years and drugs have never worked.

@heal33, that's what I read, too, that drugs often don't help your type of epilepsy and surgery can be an option for some people. But brain surgery is not an easy decision. If you are considering Mayo Clinic, you could call them to find out more about how many trips and what would be involved in terms of time, visits, risks and costs. Here is the contact information should you wish to explore:

I also found this information. It's written for medical professionals so the language might be challenging.
- Minimally invasive options for medically refractory epilepsy https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/minimally-invasive-options-for-medically-refractory-epilepsy/mac-20430455
- Whole-patient epilepsy care: Uniting technology and psychosocial expertise https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/whole-patient-epilepsy-care-uniting-technology-and-psychosocial-expertise/mac-20476160

And this video
https://youtu.be/YhxIzJfS-f0

Heal33, may I ask how old you are now? Keep asking questions.

Colleen--thanks for all the info. It looks like the 2 choices would be the vagus nerve stimulator and RNS because the other 2 haven't been approved yet here but have been in other countries. I'm 69 years old and I told the doctor I am seeing now on the first visit (on telehealth) that I'd like to be free of seizures until I die. After 40 years (of complex seizures) it would be so nice to not ever have another one again. I may be too optimistic though. I'm afraid of the surgery too.

I live in Chicago so I don't think I'd have problems finding someone who does the vagus nerve stimulator with some expertise. RNS I would prefer to have at Mayo as I think they would have more experience. It may involve a lot to testing to make sure the device works right. I would want someone to go with me for support too.

@heal33
I’m not a big fan of Epilepsy surgery although it has helped many patients especially with Temporal Lobe Epilepsy. It has also made some worse. Not to mention complications from Inter-cranial EEG to pinpoint the seizure focus for surgery, including death. Both the RNS & VNS usually perform better over time. The RNS Is a learning device although that’s not to say that it hasn’t helped people in the first year. Like I always say epilepsy is a very personal condition. Just because something works for one person with the same diagnosis doesn’t mean it’s going to work for someone else. I believe epilepsy surgery is a risky gamble it’s one I was unwilling to take. I was told my epilepsy was intractable and my seizures would last till I died. They were wrong. My seizures stopped after 44 years. How frequent are your seizures? Which medications have you tried?
When talking to medical experts you’ll probably hear more of the potential benefits than you will of everything that could go wrong. Just make sure you’re prepared for the good as well as the bad. I am probably overly pessimistic but I have heard from so many family member so many parents I suppose it’s made me more pessimistic than optimistic.
Just be sure to weigh all the facts before proceeding.
Take care and I wish you well,
Jake

I usually have 3 a month, more if I'm stressed about something. I'm sure a lot of people on this site have much worse problems than I do. They only last about 10 to 15 seconds. It does affect my consciousness accompanied by a feeling that is hard to describe. I also feel fear but part of that may be due to the time I had a febrile seizure at 8 years old, waking up in a hospital not knowing what had happened. Sometimes the after affects last for about an hour. They started at the time I was 27. Sometimes I have an (aura?) but sometimes it just comes on suddenly. I also had a concussion when I fell at the age of 3 or 4 where I lost consciousness and was brought to the hospital but that didn't involve a seizure.

I try to say something to myself to help during the seizure (for example, repeating the Lord's Prayer). I seem to have to start that as soon as I feel it coming on. Lately I have been slowing down my breathing which seems to help whenI try to start right away. I think this is the Butyeko or Frolov effect.

I'm curious to know why they said I was born with it. That could be genetic-familial or a problem with the genes. You mentioned before genetic could be something besides a family connection. I think this happened due to an injury or the febrile seizure both in childhood.

@heal33
Hello,
I would say your guess is as good as the Neurologists. It’s doubtful anyone will ever know for sure. I was told my seizures were caused from birth. I suspect they were caused from being hit in the head with a baseball bat when I was a kid. Bottom line is the doctor can’t prove his theory and we can’t prove ours.
So we both have epilepsy what difference does it really make what caused it. I doubt it will ever change anything. Sure I’d like to know just for curiosity sake but I can live with not knowing, good thing because I’m sure I never will.
Have you ever asked your doctor his reasons for why he suspects what he does.
I’m curious how you feel when you have a seizure? You mentioned you have a feeling that is hard to explain can you tell me what part of the body that feeling is in? Is this feeling an aura or does it happen during the actual seizure? Apparently you don’t always have an aura, when you do are they always the same or similar? It sounds as though you have Focal Impaired seizures, previously known as complex partials. If that’s the case the majority of people aren’t aware of what’s happening around them although they can still perform tasks. Sometimes when I’d have one I would wander and have no memory of it afterwards. It sounds as though you remember yours is that right? during your seizure do you respond to other people or can you hear other people talking to you. Is there any part of your seizure you have no memory of? Are you post-ictal/confused and sleep afterwards, If so about how long?
I suppose if I were given the option of surgery, Neuropace or VNS and had to choose one I would choose the Neuropace. Although considering the severity of my seizures I probably should’ve had surgery. They were very frequent and lasted up to 20 minutes.
Take care and good luck,
Jake

I won't see the second doctor until September when I will ask him how he reached his decision. The first doctor said it was the head injury. The nurse said this week I had mesial temporal sclerosis and was born with it. I asked my brother if we had any relatives who might have had epilepsy at childhood or did my mother fall when she was expecting. He answered no to both questions but then he was only five years old. Like you said, I guess there is no reason driving yourself crazy over the cause.

I'm not sure if it's what you call an aura but I do get a warning sometimes when it happens. The symptoms are in my head mainly (know that sounds funny). You're right they were called complex partials.

For some strange reason they don't happen usually when I am around people or outside. Maybe my mind is being distracted. They happen when I am seated in front of my computer, seated watching tv or seated relaxed on a bedroom chair. I guess the first two are photosensitive causes and I thought maybe the third kind were because of theta brain waves that happen when you are relaxed. Which is probably why I think meditation might cause problems for me.