Fiance with Retrograde Amnesia from surgery

by Ambivalent Grief
(California, USA)

I have been with my fiance for 10 years. After 6 years, he developed epilepsy and had a grand mal that almost killed him.

memory problems story
Since then, he had short term memory issues. We were engaged for over 3 years, but were putting a wedding off until after he had surgery to control the seizures we were dealing with weekly, sometimes daily.

He hadn't driven in over 2 years. We moved into a dream house a year before, then got his business ready to run without him. We had many talks about our future together without seizures, taking vacations, etc.

We couldn't wait to begin a more normal life. We were very much still in love.

In May, he had his left temporal lobe, hippocampus, and amygdala removed. The surgery went well, and when he woke up, they asked him who I was.

He said my name and that I was his fiance. I was so excited that all seemed well.

I did notice some things at the hospital that were off, but he just had brain surgery, so dismissed them. But soon after we returned home, I started realizing that he lost a lot of his long term memories.

At 6 weeks post surgery I realized that he had lost all of his personal memories for up to 15 years. He did not have any memories of anything we have ever done, said, or gone.

brain diagram
Left temporal lobe, amygdala, hippocampus
I also realized that without those memories, he did not have in love feelings for me anymore. He wasn't hugging me, holding my hand or anything anymore.

He was snappy because his brain was still healing, and after 5 years of being strong for him to help him through epilepsy and surgery, I finally broke down and cried for a week. The surgery changed him and he no longer wants to be in an intimate relationship.

What I learned is that there are different kinds of long term memory:
  • Semantic Memory: general knowledge of the world and things in
    your life.

  • Episodic Memory: personal experiences in life. Your timeline.
Semantic: He knew who I was and that that I was his fiance.

Episodic: He has no memory of asking me to marry him, even though it was a very special emotional event for him.

Our love story has turned into a living nightmare. We are trying to be friends for now. But I have no idea what our future holds.

I never realized before how valuable memories are. Our lives are built on them.

Doug's Reply

Your story is heart-wrenching. Unfortunately, this is a common outcome among those who've had brain trauma due to surgery, car accident, stroke, and other causes.

I'm sure you've tried showing your fiance photos from your past to help jog his memory. You might want to continue looking for triggers for memories that seem to be lost.
Pat Martino
Pat Martino - April 20, 2008
flickr / tom.beetz

Like your fiance, legendary jazz guitarist Pat Martino lost most of his left temporal lobe due to surgery. Martino had suffered seizures his entire life from an entangled arteriovenous malformation (AVM) in that part of his brain.

After the surgery, he showed no interest in music. He didn't remember that he was a famous jazz guitarist. His father said he would walk right past his guitar and not even look at it.

However, certain sounds, images, and conversations began to trigger the return of some of his memories.

Of course, many memories never returned, but some did. I wonder if you might find some hope in Martino's story. Maybe even some ideas to try in your fiance's case.

For anyone reading this, if you have been through a similar experience please comment on this thread. I'm sure the poster would appreciate any insight or encouragement.

Thank you for sharing your story. I will keep you in my thoughts and prayers.

Best regards,
This is information only. It is not medical advice, diagnosis, or treatment.

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Feb 20, 2017
Thank You so much
by: Ambivalent Grief


I just wanted to thank you so much for your reply to my story and linking me to Pat Martino's story. I found it very inspiring. Sorry it took me so long to reply, as I have just been working on and trying hard to keep a positive outlook on our situation.

To update; He did get SOME of his memories back. But without the emotion connected that he had. He lost his sense of self and seems like a very different person now. All of the special little ways that we interacted with each other were gone. Very similar to Pat Martino's story. But his seizures were reduced by 95% by the surgery, so it was a success.

We are no longer engaged, but still live together as companions/ best friends. Our lives changed tremendously. We both have our own greiving of losses that we have to cope with, but try to make the best out of each day, as that's all we truly have; is today.

Your page is very informative and helpful.
Thank You so much for helping all of us affected in one way or another, by memory loss.

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