Mesial Temporal Sclerosis

[JLynn]

Hi guys,
Ive been asked by a few of you what this is that I was diagnosed with through an MRI.
Now I am able to post a link (Thanks Bernard)

http://www.nyp.org/health/mesial-tem...sclerosis.html

this explains the gist of it I think

I imagine there are others here with this same diagnosis from MRI?
I also have the atrophy with it as well, fantastic huh!

Thanks for being here
JLynn

[Nancy]

Well ............... JLynn , First of all could I give you an Internet (((HUG)))?

The Mesial Temporal Sclerosis sounds so complicated and even - to a devout coward like I am - SCARY.

But it sure has a lot of answers to a lot of questions, right? And it does say that surgery is an answer to some of our epilepsy problems. I certainly agree there.

I'm sending you best wishes and prayers...... and lots of thanks for such a good site.

[raghavan]

I too have mesial temporal sclerosis (Left hippocampal Sclerosis) Unfortunately it is in my dominant part so surgery has been ruled out. I want to try Vimpat. Keppra works to some extent (I would quantify it as around 40%) What anti-epileptic drugs have you tried ? Is there any topic in this forum where this topic is discussed ?

[Meetz1064]

a quick search through the forum, and if you follow this link, you'll find other threads, (including this one and the one you started) that MAY be tied to it. You'll have to check them out.

MTS search

Hopefully that helps you a bit. If not, feel free to check things out in the Library and Kitchen. Also we do have a doctor who might be able to give you some more information. One of the mods is a doctor--training to be a neurologist. You could PM him as well, if you'd like. His screen name is DrArvindr.

Welcome to CWE, by the way. I hope you'll like it here. You'll find plenty of friendly people, and lots of information. The dinner party that Mr B is throwing here in the house that he's built for us is going well, so feel free to kick off your shoes, sit back and relax. And hopefully one of the guys will bring around some decent decaf coffee or something. I keep burning it. *eyeroll* You'd think I'd learn by now..........

Buckeye....Eric....Arvind...where's the coffee???

Gotta go. Seems I need to make sure there's some brats cooking on the grill. The guys are slacking off.

Take care.

Meetz

[Bernard]

Sorry Meetz, you can't link directly to search results, because the forum doesn't remember them for more than 10-15 minutes. You can however, link to tag pages:

http://www.coping-with-epilepsy.com/...tags/mtle.html

JLynn, your link doesn't discuss the Herpes virus connection which could be a bigger factor than seizures (in the sclerosis):

Human Herpesvirus-6B with Mesial Temporal Lobe Epilepsy

[gr8investor]

It seems as though Mesial Temporal Sclerosis is a misunderstood, confusing and often untreated disorder. Many who suffer with it are familar with treatment options, but have difficulty finding an option that works for them. After trying 5 different medications, my neurologist finally admitted there is not a medication on the market that can help treat the MTS disorder I have.
He then referred me to 5 different neurosurgeons for possible brain surgery. Unfortunately, all agreed that because I had a right temporal lobectomy of the hypocampus that brain surgery was not an option for the left temporal lobe as treatment either.
As a result, I have Meisal Temporal Sclerosis of the left temporal lobe that is going untreated due to no treatment options available. I have been told that eventually the seizure activity will create enough scar tissue in the temporal lobe that will cause brain damage resulting in quality of life effects....in other words, it will affect my ability to live.

No time line has been given, it could be 8 months or 8 years. I was told all they can do is watch the brain activity and scar tissue in the brain......so, again a disorder that medicine has a name for, but knows little about.

[Bernard]

Hi gr8investor, welcome to the forum.

Have you been tested for the virus as mentioned in the post above yours?

There may yet be some options available to you that weren't mentioned by your doctors:

Proactive Prescription for Epilepsy

[s10sleeper]

I too have Mesial Temporal Sclerosis that has been diagnosed as refractory. So far the things that I have tried are about 12 different medications in multiple combos. Along with this I went through the testing to see if I was a candidate for brain surgery. During the Wada test, however, they found out that it was not a viable option as I could lose all speech and a large portion of my memory.

This was quite depressing, but I still did not fully understand what MTS was. They then decided to see what other options we had and since the VNS would not have been much help, I became a candidate for the Neuropace RNS implant. It seems to have helped some, but not a huge amount. After having this for 2 years only to find that the best it has done is to get my Complex partial seizures to happen nocturnally, multiple times a night, but no longer during the day, I spoke with the epilepsy center to see if there were any other options. Their best suggestion was to get a second opinion from another center such as the Mayo clinic or another epilepsy center that was participating in the RNS study as I cannot go to any other doctors. The reason for the 2nd opinion was to see if it may still be possible for surgery.

When researching this, I found some bad news, none of the other centers accept KS medicaid, and the only epilepsy center that does is the one I am working with, so that kind of put me back to square one. The other downside to this center is that currently they have no epileptologist as their previous one lost her Visa.

I was never informed by them that MTS can continue to cause further damage, after I researched it I asked them and they informed me that was correct. I also found out that the areas of my brain are the same areas that are involved with ADHD symptoms which they are thinking I may also have, I will find out on next friday. Hopefully it will all turn out for the best and I am continuing to try to read further into all of this to do all I can as I have gotten tired of these seizures that I have had for the past 30 years.