Memory Loss Due to Brain Surgery

by Gweneviere Mann
(New York, NY, USA)

I'm 40 years old, and had brain surgery to remove a benign brain tumor in November of 2008. My brain tumor was located in the part of my brain where short term memory is.


In 2011, Gweneviere Mann was interviewed by
NPR's Story Corps. Listen to her now in the video above.
Following my surgery I have been suffering from difficulties in both making and retrieving memories. I remember very little of what has happened over the past 2 years.

Unfortunately, I am getting to the point in time where the doctors say that whatever isn't back, likely won't come back. So, I am facing the very real possibility of living the rest of my life without my memory.

How does this make me feel? I won't lie, it makes me feel terrified. But every day I wake up I remind myself of how lucky I am to be alive, and I vow to do what I can to make the most of what I have left. It's not a perfect life, but it's mine.

Although I have many friends and family members who have been there for me to support me through this difficult time, it is really hard to not feel alone on this road. Loss of memory is very difficult because life is built on memories.

I often feel alone in the world, because life without memories can be very lonely. I feel disconnected from the world and from my friends. Even when I spend time with friends, I don't remember it the next day, and so it feels as if it never happened.

But I have worked hard on finding ways to make up for my memory loss and to feel more connected to the world around me. I make sure to keep in touch with people, I started a BLOG so I could share my experiences with people, and I joined a support group.

I journal several times a day. I journal so I can remember what I have been doing, remember whether or not I've eaten, remember time spent with loved ones, remember something funny I saw on the subway, anything.

I also spend a lot of time exercising my brain trying to get it back in shape. I ran across this website while doing searches for anything related to memory training. I use the site often and am thankful for it.

If you are reading this and are experiencing difficulties, remain strong and know you are not alone on your road.

Doug's Reply: Gweneviere, others around the world whose lives are affected by brain surgery or other causes of memory loss will surely be inspired by your courage, determination, and positive attitude. Hearing about your experiences makes me appreciate the good things in my own life all the more.

Thanks so much for sharing your story.

Regards,
Douglas
Memory-Improvement-Tips.com
This is information only. It is not medical advice, diagnosis, or treatment.

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Apr 28, 2017
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Memory problems after craniotomy
by: Vicki

Patricia, Thank you thank you, thank you! Not that having a hard time with your handwriting or spelling is a good thing, but I can't believe there is someone out there that has a complaint of the same thing.

3 years ago I had most of a meningioma tumor removed from the cavernous sinus/optic nerve area. I still have some left in the cavernous sinus (not an area they can go in with a knife).

I also have had handwriting and spelling problems. You know it's bad when spell check doesn't know what your trying to spell. My handwriting was bad to begin with, but now it's just plain stupid.

I sculpt with polymer clays and haven't done any since the surgery. Started back in a couple of months ago. It doesn't feel the same. It's like my hands aren't getting the right signals from my brain.

At first I thought it was stress and or the clay itself. Today I found out, nope, it's me. I could not for the life of me make an elf ear. Something that I have done hundreds of times before.

I have a call into my doctor, but after reading all these comments, I'm feeling more and more concerned. I just can't lose my ability to sculpt.

I've decided to go back to basics, to see if I can retrain myself. Like so many others, no one told me that any of this stuff could happen.

I had the freaked out over-sensitive, over-everything for at least a year after. I still have the beyond sensitive scents of smell. Developed an "A" typical migraine from that. I get all the symptoms of a migraine except the pain and aura.

Nothing like being in a store, walking by the candle section, and suddenly I go into a brain fog. I get disoriented, dizzy, and find it very difficult to concentrate, and feel very spacey. then I just plain don't feel good. I usually have to leave the store and go home.

Nothing helped that until last month someone introduced me to the essential (had to go look that word up) oil of rosemary.

Evidently I went to a really good concert with my brother last year. But I have no memory of it. It really sucks, cuz it was one I really would liked to have gone to.

Most definitely, life after brain surgery is NOT the same. Anyone still get stabbing or deep aching pains in the temple area?

I'm not getting any good answers from doctors, but it's nice to know I'm not alone in all this. Thanks and good luck to everyone out there.

Apr 22, 2017
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My memory experiences After brain surgery
by: Dipankar Bhattacharya

I had a brain surgery on 5th of August 2013, and I had and I have problems with my memory but it seems that the names are the major memory miss and keeping track of my thoughts in talking time... If THE CHAT IS CASUAL. I am fighting it out.

Mar 17, 2017
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Memory loss after craniotomy
by: Patricia

I had a craniotomy for removal of a Meningioma on my right
temporal lobe 10yrs ago, since then my memory and other
things I have to cope with such as my handwriting is useless,
My spelling, which was really good lets me down. Lots like
typing, following tv and films and concentration, all of
which I have problems with.

In all the years since my operation none of these have got
Any better. I am on medication for life because of epilepsy
and I have another tumour on the skull base, which I suppose
doesn't help.

But I am here with my family, I've come through and
I thank God every day for my life..





Feb 20, 2017
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Had 2nd benign brain tumor removed
by: Shelley Turner

Hi,
I had a benign brain tumor removed 10 yrs ago. Found another 4 months ago. I have memory problems, watch movie can't remember next day

Hard time understanding things. I forget everything. I'm sad.

Frustrated, I react fast without thinking. I need help.

Jan 28, 2017
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Please call me and share your insights with me
by: Fred Wilcox

To anyone reading, if you can relate or can share your insights on this issue, please call me 319-521-6511 (cell). We're from Cedar Rapids, Iowa
My wife had a surgery for a pilocytic astrocytoma, about golf ball size on February 5, 2015, and it has ruined our lives. I could spend page upon page going into the ethical issues surrounding her care and our belief that this was malpractice. Instead, I'll try my best to not drag this post out.

Janelle didn't have any neurological symptoms prior to surgery and was working full time as a social worker for our county government. The tumor was found during a last ditch attempt to find a cause for a fertility issue.

After the surgery, about every issue short of death has occurred. Most notable she had to have a second surgery for a shunt, has went from 160lbs to 245lbs and she has virtually no memory of any events a few months prior to surgery to the present. She says she has no visual memories of even past events but knows when we got married and when we had our son and some of the jobs she worked in the past, etc. I had to quit my job or she would have had to go to a facility and even today requires 24/7 support, so still not working. She isn't even oriented to the month, day of week, or even the year we are in. She gets perplexed when looking at her android calendar or wall calendar, and she says in her mind our son is seven or eight years old. He's 11 years old. It's so sad and senseless.

The neurosurgeon came out of surgery and said my wife did great and that she was settling into the ICU as a precaution. The last thing he said in front of myself and mother and father in law was that they might have cut memory bundles. I asked further and he said they didn't think they did but would have to monitor her closely. He says now he doesn't remember ever saying this. Anyways, we go up to the unit and she ended up in a coma for 2-3 days. It's been a nightmare since. We later found notes in the medical record from the anesthesiologist saying that they weren't able to wake her up and another anesthesiologist came up to Janelle's room a couple days after the surgery when she was in a coma and said the neurosurgeon had commented earlier into the surgery he didn't think she was going to wake up right away. There are so many other red flags it's disturbing.

We could use a lot of advise and support.

Dec 02, 2016
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Blessings
by: Anonymous

Hello everyone , I was diagnosed with epilepsy when I was 9 , I don't know how Grandma siezures I had when I was little but my longest recorded siezure was 12 hours , I have went blind 4 times all diff grandma siezures j have been paralyzed , I had brain surgery in 2005 best decision ever because I was living in FEAR ........ But in 2016 I became a mom to beautiful lil girl ....... God Bess Every one

Sep 27, 2016
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New to Brain Surgery
by: Rebecca

Thanks for this article! It was just discovered that I have a golf ball size brain tumor on my right side with removal surgery planned in 3 days. Still unsure what to expect, but these tips about memory loss are very helpful. Thank you all in advance for the insight!

Cheers,
Rebecca

May 28, 2016
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When surgery is a choice
by: Anonymous

I did speak with the neurosurgeon regarding the possibility of an additional surgery (SAME surgeon AS EARLY '90's) In the past, and continuing, I have used the psych-counseling to learn to calm myself easier, and also they too taught me the use of a journal.

The most challenging choice: Do I wish to spend weeks in a hospital again and have more brain tissue removed? Although I like the change in one area, I found the weakness in another offset it with surgery. At my age the choice remains a challenge.

May 22, 2016
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Surgery
by: Anonymous

In 2013 I had brain surgery , but it has caused me to lose my memory. I cannot remember anything longer than a day. Prior to the surgery, my memory was excellent.

Feb 23, 2016
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Pituitary tumor
by: Anonymous

My brother had a large tumor removed from his pituitary October 29, 2015. He lost his peripheral vision, has double vision and has short term memory loss. He is still getting pt, ot, speech therapy.

I appreciate all the information on this site. It's reassuring to know that other people share their experiences and we are not alone.

Our mother passed away during the time my brother had his surgery; even though he was there for the funeral he can't recall this. Every day he will ask about her.

As soon as I remind him again, he remembers, but forgets again. It breaks my heart to see him go through this.

Any suggestions that could help??

Doug's Reply. You mentioned physical therapy (PT), occupational therapy (OT), and speech therapy, but not cognitive rehabilitation specifically.

Perhaps the OT covers this. But if not, your brother might benefit from follow up neuropsychological testing and cognitive rehab.

A visitor to this site named Gweneviere has memory loss from a brain tumor and stroke. In her response to a question from a mother whose daughter has memory loss, Gwen listed a number of helpful post-surgery follow up steps.

Here are the essential points from Gwen's answer. There may be ideas here that could also help your brother:

"It takes time to learn how to function without a memory, but once you have some standard practices in place, life is much easier for the memory impaired.

1. "Get Neuropsych Testing done. The Neuropsych Testing will pinpoint exactly where her strengths and weaknesses are, which will help get her the right cognitive rehabilitation. Her doctor can write a prescription for her and recommend a place to have it done.

2. "Once she has the Neuropsych Test Results, she can get into private cognitive rehabilitation. The doctor who oversees your daughter's case (for me it was my Neurologist) can likely give her some recommendations on where to get the cognitive rehab. I live in New York City and was able to go to Rusk Institute which was great.

3. "Have your daughter use memory tools. Some suggestions are:

- "Keep a journal. Write in it 3 times a day. Set alarms on a phone or watch as a reminder to journal or she will likely forget. My journal helps me so much. I can read about what I've been doing, friends I've spent time with, etc. It helps me feel much more connected to my life.

- "Keep a digital camera on her at all times. She can take photos of experiences she has during her day to remind her of what she's been doing, and to help her feel more connected to her life.

- "Keep a monthly whiteboard calendar in the kitchen or elsewhere in the house where it will be seen often. Keep all appointments (medical and personal) on this.

- "Get a pack of Index Cards. Write a daily schedule on it for her to keep in her pocket. She should schedule specific times for each activity she does and mark off each task as she does it.

- "Get into a support group. Her doctor should be able to lead her to a listing of some. Other options would be contacting a hospital for a list of support groups. Support groups have really helped me. Regardless of how much love and support friends and family can give, there is something comforting in knowing someone who has traveled a similar road to you."

Regards,
Douglas J.
Memory-Improvement-Tips.com

Feb 14, 2016
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Memory after brain surgery
by: Kelly M

Hi, I had an open crainotomy in 2011 for a brain tumor wrapped around my optic nerve on the right side. There went my profession as a neurology nurse of 23 yrs.

I went legally blind and have short-term memory problems and difficulty finding the words I want to speak. I also have a brain tumor in the left optic area.

With 2 brain tumors in the optic area i am being genetically tested for neurofibromatosis type 2 (NF2). I am so happy i found this site and be able to share our worries and concerns God bless us all.

Doug's Reply. Kelly, thank you for sharing your situation. We will certainly keep you in our thoughts and prayers as you go through this difficult time.

Dec 04, 2015
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memory loss
by: anonymous

I fear a second surgery, I had one in 1991, it's been suggested I do an assessment again. I had to reduce studies due to memory lost back after the first surgery.

I'm still struggling with these struggles, and I've been referred back. I wonder what effects tests and a second surgery may have.

Epilepsy is not easy, neither is surgery, or the resulting memory struggles for me.

At least I know my way home, and how to cook certain foods (which my mother taught me in the '80's. (I am in my 40's).

Jan 27, 2015
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For Tim in Texas re Confabulation
by: Gwen

Hi Tim,

I had difficulties with confabulations, (invented memories) for several months after my brain surgery. This is a pretty common occurrence I think for people who suffer a brain trauma. It was scary and difficult because I was trying to weed through what was "real" and what was "invented" by my own brain.

Confabulations feel like real memories. Once I knew what was going on, and was made aware that the confabulations would cease at some point as my brain healed, I felt more comfortable about it.

Now, several years since I've had a confabulation, my friends and I giggle at some of the funny "memories" I used to have. One confabulation I had was that there was a door to the bathroom through the walk-in closet in my bedroom.

It took several times of my husband yelling out, "There's no 2nd entrance through the closet. You need to go the other way." before it finally stuck. I no longer walk into the closet looking for a back door that doesn't exist. =^)

My doctors told me the confabulations would stop once my brain did its healing, and they were right. I'm sure it will be the same with you. If you're still concerned, just have a chat with your doctor about it so they can explain it to you.

Nov 18, 2014
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Memory Loss/Memory Addition?
by: Tim - Texas, USA

I had a Sub-Epindemoma (Not sure how it's spelled) back in 2004, and it was for a benign tumor in the 3rd ventricle of my brain. Ever since I have had "short-term memory loss".

But others say that I have had memories that "don't exist". In other words I remember something that never happened...

Am I, or have I made up memories that don't exist?

Doug's Reply. Could be. Having false memories is known as "confabulation". It is sometimes a side effect of brain injuries, including traumatic brain injury and brain tumors.

Was your procedure a subependymoma? This type of tumor usually occurs in the fourth ventricle, but a third ventricle subependymoma is not unheard of.

I did find a case study from Madrid of a 71-year-old man who had false memories after having a subependymoma removed. The study, from 2010, is called "Spontaneous acute hemorrhage within a subependymoma of the lateral ventricle: successful emergent surgical removal through a frontal transcortical approach".

Here's a quote from the study:

"After the surgical procedure, the patient recovered progressively his normal level of consciousness. Nevertheless, he presented both temporal and spatial disorientation, and episodes of agitation. In addition, the patient exhibited anterograde and retrograde memory impairment with confabulation."

Apparently, false memories do sometimes happen to people who've had brain tumors. I suggest you consult with your doctor, who may be able to provide more information, clarification, and recommendations.

Regards,
Douglas
Memory-Improvement-Tips.com

Aug 10, 2014
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Brain surgery and Short-term memory issues
by: Mark

I had a left temporal craniotomy due to epilepsy. The Neurologist said that my short term memory "may" get better, but unlikely. I have trouble remembering family members names. I must learn to accept it and be appreciative.

Jul 29, 2014
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Brain Surgery
by: Beverly

My husband had surgery on the right side of his brain in March, 2014 for an aneurysm. He has no short term memory of the last 10 years.

We live in a rural community so there is no support groups we can attend. We have tried all kinds of memory games with him but he is 67 years old and refuses to do them.

He does pretty good after the 1990's but from then on he is pretty blank.

We have tried 2 different medications to help him get his memory back but he cannot take them as one gave him chest pains and the other one made him sick.

My daughter and I are sharing the work load with him but find it very difficult day in and day out. They tell us it could take up to a year or maybe never before he gets his memory back.

We will keep trying and never give up.

Jul 19, 2014
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Memory loss
by: Den

I had a tumour removed last June (2013). I started to have problems with my memory before I was diagnosed with a tumour. It was located on the left hand side of my head.

I have been told it will take up to eighteen months before I start to feel better. But I'm finding even after having the tumour removed my memory problems are just as before pre operation.

I get very frustrated when I cannot remember simple things. Or I get mid way through a sentence and cannot remember what I was saying.

I have to write things down. On scraps of paper. I often find love ones will tell me they have answered my question but I cannot remember asking in the first place.

I find trying to remember what happened yesterday very hard as it i not always clear to me on what I did or where I went.


Feb 15, 2014
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Reminder
by: Anonymous

Hi, I started reading this and felt I must have written this. I too had brain surgery almost 3 years ago on my left temporal lobe.

My memory has gotten much worse. I was just told that brain surgery is or can be part of dementia. I am so wishing I could have surgery again to get past all this.

Nov 20, 2013
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My brother
by: Anonymous

It's nice to know that we are not alone. My brother had a tumor and had brain surgery to remove it. The surgery didn't go so well, and he was in the hospital for over a month.

He had to get two shunts placed in his brain to help drain out the CSF fluid. He wasn't able to walk or talk, but after they placed the shunts he was able to follow commands and understand you.

It's been a month after surgery, and he is able to walk with out help. He remembers everything from his past, and he can answer all your questions, but if he was to start a conversation it just doesn't make sense.

For example, he'll be like, "Oh my aunt comes and visits me everyday," and I will tell him are your sure because your aunt lives all the way in California, and she's not here with you. Then he'll be oh really ok.

I'm wondering if his memory will improve over time?

Aug 12, 2013
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Two Brain Surgeries
by: Anonymous

I'm 18 and I've had two brain surgeries, one in 2012 and the other 2013. My second brain tumor was located in the same place, and lately I've had issues remembering conversations and little things.

It's not a lot, but I forget things I've said and things I've heard. I also can't concentrate on any conversation. They have to repeat one thing a few times for me to understand.

I can relate to some things in your article, because I see them in myself as well. You couldn't be more right about how it's hard not to feel alone on this road.

Apr 18, 2013
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Your NPR Interview
by: Doug (Memory-Improvement-Tips.com)

Gwen, I just came across your 2011 audio interview with NPR! It was amazing to hear your story in your own voice.

I've posted a link to the interview on my Memory Problems Story invitation page. I'm sure visitors to Memory-Improvement-Tips.com would love to hear your interview, so I hope you don't mind.

I am very impressed by your efforts to move forward with your life, Gwen. You certainly are an inspiration.

Aug 11, 2012
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Responding to some of the comments
by: Gwen

If you know someone experiencing memory loss too, have them get Neuropsych Testing done. This will pinpoint strengths and weaknesses, and will help your doctors be able to focus cognitive rehabilitation to your specific problem areas.

Nov 23, 2011
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My mom after brain surgery
by: Anne

My mom, aged 63, underwent a craniotomy to remove a benign tumor about 3 weeks ago. She now lives in the past and can't remember recent happenings. She can't seem to do things like reading and writing.

There are moments of clarity sometimes, but few and far between! She is currently undergoing rehab treatment. Will this help at all? Will my "real mom" return to us? Or do we have to prepare for a life that is going to be quite different?

Nov 10, 2011
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Short term memory loss affects family
by: Claire

Your story is very eye opening because my dad had a benign brain tumor and had it removed in 2006. A hemorrhage occurred during surgery, resulting in short term memory loss. Now, he can't work and he has to constantly have his iPhone with him to be reminded of what he needs to do that day and even what day it is.

It's challenging for the whole family because we had to totally adjust our way of thinking and the structure of our family. My dad used to be the leader and he was very involved in every part of our lives. Now, we have to take care of him and make sure he's staying on track. We used to rely on him, but now he has to totally rely on us.

Whenever I ask him, he never seems sad or lonely about it.. I don't know if it's because he doesn't remember that he can't remember things. This did make me aware, though, that perhaps he does sometimes feel lonely and I need to make sure that I always treat him with respect as if he is still my father who can help me in many ways, because he can, just differently than before.

May 20, 2011
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Memory Loss
by: Don

I had a very large benign tumor removed from the parietal lobe in Nov 2009, and I also am having increasing memory loss. I can work and remember what day of the week it is, but I usually have no idea what month it is. I'm also having lots of trouble remembering things from earlier in the week, and I am starting to misplace things at home and at work. I'm 54 and concerned what is ahead.

Don (don345@hotmail.com)

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