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Permalink Reply by Kyle Martin on March 12, 2010 at 4:52pm

I'm early in the process of figuring out what to do with a DNET in the hippocampal area as well; however mine is on the left side. Just read your entire blog, it's so great to be able to learn from your experience.

You seem like a great person and I want you to know that by telling your story, you're helping others. Thought you might want to know that.

Here's to living big!

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Permalink Reply by Jaime on March 12, 2010 at 6:50pm

Thank you for reading my blog, I dont think I even read the whole thing, lol. I often write to journal my experiences and forget that people read it too, so I am glad it was helpful. I cannot believe you are another DNET adult, there are not many of us. I just "met" my first DNET adult on this site a few weeks ago. Do you have seizures?

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Permalink Reply by Kyle Martin on March 12, 2010 at 8:03pm

Hey Jamie,

Ha, sometimes I forget others read my blog as well...until my Mom emails saying that 'mother doesn't approve'. Mainly when I'm making fun of the situation.

I haven't done a biopsy, so docs aren't sure if it's a DNET or a low-grade glioma; but all signs are pointing to DNET.

The seizures thing is a tough question right now. I didn't even think I was having seizures a few months ago when this all started, but I just knew something was off. After talking to the docs, they think my symptoms may be a type of seizure so I'm on Keppra to see if it helps. I think it may be helping with most things.

What's your story this weekend? Any time to relax? It looks like you just had the Watta (sp?) test. My buddy is going to have that done as he's thinking of epilepsy surgery and it's been discussed for my situation as well. However, I'm in a tough spot because it's my left side.

Anyway, good to 'meet ya'.

KM

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Permalink Reply by Di on April 21, 2010 at 11:40pm

I had my entire hippocampus removed during one of my craniotomies in 1997. I lost approx. 90-95% of my long-term memory as a result. Even though it had only been four years since I had graduated from high school when my hippocampus was removed, I didn't (and still don't) remember my graduation from high school, going on family vacations, (I'll never forget my dad looking at me and saying "don't you remember going to the Grand Canyon with the family 6 years ago?"....I got a little emotional realizing that I had been to the Grand Canyon six years prior but had absolutely no memory of it), amongst many other things.
I guess it'd be easier to say that the things I do remember include Mt. St. Helens erupting, the Challenger Shuttle exploding (I was in 5th grade), and other things that have strong emotion tied to them. For whatever reason, if there's a strong emotion tied to the memory, I remember it with great clarity, otherwise, I have a really hard time.

Good luck with everything! :) You're in my prayers!!!

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Permalink Reply by Beth Rosenthal on April 22, 2010 at 6:18am

Hi Di. I completely understand how upsetting memory loss can be. Mine is from my trigeminal neuralgia (chronic facial pain) and the many pain medications that I was given, which never helped. I didn't understand my memory loss until 6 yrs. ago, when I found a pain doc who treated me w/ the correct meds. I didn't realize how doped up I was for 13 years, from 1989-2002, age 16-28. I have been very upset that I can't remember special memories with my mother, my travels in the world, many nice memories of friendships in college, etc. My emotional growth was also effected b/c they were such important developmental years. I remember my many bad memories but, not enough good ones. It's been a great loss to me. I hope that one day there is someone who can improve your situation.

Di said:

I had my entire hippocampus removed during one of my craniotomies in 1997. I lost approx. 90-95% of my long-term memory as a result. Even though it had only been four years since I had graduated from high school when my hippocampus was removed, I didn't (and still don't) remember my graduation from high school, going on family vacations, (I'll never forget my dad looking at me and saying "don't you remember going to the Grand Canyon with the family 6 years ago?"....I got a little emotional realizing that I had been to the Grand Canyon six years prior but had absolutely no memory of it), amongst many other things.
I guess it'd be easier to say that the things I do remember include Mt. St. Helens erupting, the Challenger Shuttle exploding (I was in 5th grade), and other things that have strong emotion tied to them. For whatever reason, if there's a strong emotion tied to the memory, I remember it with great clarity, otherwise, I have a really hard time.

Good luck with everything! :) You're in my prayers!!!

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Permalink Reply by Jaime on April 26, 2010 at 10:06am

Things (surgery-wise) are on hold because I finally found a med combo that is kinda working to control my seizures. But I did have some of my hippocampus removed during my last surgery June 09. Everything from before the surgery is ok, but this past year is much of a blur. My short term memory is not good, post-its have become my best friend. I agree that memories that have emotional attachments are better preserved (I think that is due to the amygdala being unharmed). It is so frustrating to wonder how much of my life I will remember 6 months- 1 year from now. I also wonder how much my medicine contributes to this memory loss. Thanks for your reply.

Di said:

I had my entire hippocampus removed during one of my craniotomies in 1997. I lost approx. 90-95% of my long-term memory as a result. Even though it had only been four years since I had graduated from high school when my hippocampus was removed, I didn't (and still don't) remember my graduation from high school, going on family vacations, (I'll never forget my dad looking at me and saying "don't you remember going to the Grand Canyon with the family 6 years ago?"....I got a little emotional realizing that I had been to the Grand Canyon six years prior but had absolutely no memory of it), amongst many other things.
I guess it'd be easier to say that the things I do remember include Mt. St. Helens erupting, the Challenger Shuttle exploding (I was in 5th grade), and other things that have strong emotion tied to them. For whatever reason, if there's a strong emotion tied to the memory, I remember it with great clarity, otherwise, I have a really hard time.

Good luck with everything! :) You're in my prayers!!!

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Permalink Reply by Virginia Worley on April 16, 2012 at 10:34pm

What is it like for people who have had only one hippocampus (the left) surgically removed? my dad has a "probably benign" tumor next to his left hippocampus and the docs say that there is damage to the hippocampus, and they want to take it out so they can "look at it, and figure out what it is" and that it might be good to take the hippocampus out as well.  this seems so extreme to me...and i can't imagine that he would be the same after such an intense surgery.  has anyone experienced a type of surgery like that? or know someone who has?  what was it like?  i am in accord with the original poster, and would like more info on this...it's been harder to find information about this then i thought there would be.

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