Post-Op Cognitive draw backs

Hi all,

I was wondering if anyone out there suffered any cognitive and or social drawbacks after surgery? Meaning, do you have different views, attitudes, opinions, etc... as a "side effect" from having a craniotomy (that you would not have had before surgery)? and as a result of this change do you find yourself more socially "declined"?

I had a craniotomy about 2 years ago and I know that my frame of thinking has been changed from what it used to be pre-op. Not much has changed in my life to cause me to have such drastic changes in my attitude. I would not say that this is a result of me going through the experience of having surgery, but I would think of it as a post-op side effect.

My neurosurgeon had mentioned briefly that there is a social component that is altered after surgery and I just wanted to see if anyone also is experiencing this.

Thanks,

-C

All I can add to this is that from my experience dealing with those who have gone through a profound shock will reassess their views on nearly everything, often without realizing it or understanding the impact.
This is from working with Vietnam Veterans (Australians) and
A girlfriend who had tumours and seemed to ‘change’ overnight. The reality is that they (and possibly you) didn’t change, they (you) have a different
Perspective now. Fair enough really. Those that love you will (have to) understand that.

I hate to a admit this, after I had my AVM removed, I cant hardly stand my husband any longer. He really gets on my nerves and annoys me. I have a 15 year old boy and 19 year old boy and still love them dearly. I guess my husband was very disconnected and immature about the whole thing and it really affected me. Please dont think bad of me after admitting to this.

Christine, Yes, I agree with your neurosurgeon...There is a social component changed after having surgery.

Perhaps it doesn't happen to every AVM're, but truth be told, moving around in the brain does make changes in your personality ...my personality changed. Before I had my craniotomy, I would just let things go, now I tell the truth about how I feel. It's not that I get angry, it's more that I laugh about things more than I did before and I tell people how I truley feel about different situations in my life (which is not always liked). So, I have changed...but I feel it's for the best.

Hi Susan,

It takes a lot for us to overcome such an event and it takes a lot for other people to understand where we are coming from and what we have been through. I would say that post-op, we see the importance and unimportance of things and we have different tolerance levels and sensitivites that we may not have had before.

For instance, with me, nothing with my vaules, or everyday life has changed much since surgery. I am the same in that respect, but I would say that I have lower tolerance for the unnecessary (i.e. drama, stress, negative energies). Sometimes, something/someone "pushes my buttons"; which would not have been triggered pre-op. For me now, I can manage to be around the negative energy, but I have a lower tolerance for it. I would rather just remove myself from those situations and not be around it because it is not healthy; and plain and simple it is a waste of my second chance in life.


Susan J. Evans said:

I hate to a admit this, after I had my AVM removed, I cant hardly stand my husband any longer. He really gets on my nerves and annoys me. I have a 15 year old boy and 19 year old boy and still love them dearly. I guess my husband was very disconnected and immature about the whole thing and it really affected me. Please dont think bad of me after admitting to this.

Hi Louisa,

I am glad I am not the only one that has experienced what I am experiencing. I can totally agree with the "truth button" being on post-op; and it not being well received by others.

Sometimes I say things, that I did not intend to say or intend to say it in a certain way; it's like my mouth speaks, then my brain thinks and I had know idea of what I said until after the fact lol... In most cases it is not a total blunder and sometimes its just a jumble of the words I want to say, but in some cases things just can come out all wrong.

It is 2 years + since surgery and I am still suffering some side effects. I have changed a lot sinced then and you are definately right, it is for the better. Glad to be alive =)


Louisa said:

Christine, Yes, I agree with your neurosurgeon...There is a social component changed after having surgery.

Perhaps it doesn't happen to every AVM're, but truth be told, moving around in the brain does make changes in your personality ...my personality changed. Before I had my craniotomy, I would just let things go, now I tell the truth about how I feel. It's not that I get angry, it's more that I laugh about things more than I did before and I tell people how I truley feel about different situations in my life (which is not always liked). So, I have changed...but I feel it's for the best.

Fifty years after bleed and craniotomy, even though I was a little kid, I know I'm not the same person. I remember being a happy little girl. Then I can just remember how I felt like an alien, so different, so shy, so blah!!! I used to have no expression on my face and earned the name "droopy". I did not like that name. I was off balance and bald, and was unable to follow directions at times. I still am. I have a severe visual field cut from the AVM.I talk too much or not at all, and I interrupt and say words before I think. There are other things like how emotional I can get at times. But I have had a good life, had a wonderful husband, have a great son. Married now and lives far away, but I am proud of my accomplishments raising that kid. I was a paralegal, a good one yet slower than average. You will be ok if you can just learn to accept the way things are now, and not yearn for old things.

beans

Christine, I feel exactly the same as you do regarding the drama and negative energy. I’ve lost a couple of so-called friends because of it, but really no big loss. Life’s too short to waste our time with negativity. I also seem to have lost the “filter” in my brain that used to prevent me from saying things out loud sometimes. Not that I wouldn’t have thought the same thing before, but I woudn’t necessarily vocalize it, if you know what I mean. I was never really afriad of saying what I thought, but I used to do it with a little more tact

The filters are gone with me, too. You are unlucky to have AVMs, but you are young and smart, and its so good you know the results are from the AVM. I never knew because no one ever told me, and when there was an internet, I figured it out. I always worried about what others though, but I don't learn things at times. I am so much better than I used to be, and now think the hell with other people. I too have lost numerous friends. So never waste your life doing what I did - caring what people thought more than what I thought. Oh, well.

beans

After my stroke, I started to notice that I mix up words in my sentences - not all the time, but I get words reversed, and sometimes I’ll get the first sounds on words reversed. I also have a great deal of trouble remembering numbers…I used to have a great memory for phone numbers, addresses, dates…gone now.

If there are multiple conversation going on around me, I get confused about which one I’m supposed to pay attention to…it gets overwhelming. I don’t remember feeling like this before the stroke.

Hi Beans and ECG,



Thank you being apart of this discussion =)



ECG,

I still get things mixed up even now. And I also used to be great at remembering things, but that went out the door after surgery. Granted, I still have my wits about me, but I am not good at remembering things as I did before. But I figure that is what post-its and smartphones are for lol. I think that our body’s need time to heal and we may not bounce back to our former selves right away, but eventually we will get there…in time, with patience and with strength we will all get through this…always have faith =)



Beans-

t must have been very difficult to go through what you did. Before AVMs and craniotomy’s were probably not known and by default people would not understand. But believe me you are not alone. Unfortunately, this condition runs in my family and my surgery was the not the first one. I always think back to before the surgery and about how I want to be how I was before. I have slowed down since then and I cannot push myself as hard as I did before. I went from 60 to 0 rather than 0 to 60. But slowing down is not so bad. I get to enjoy life and not go through the motions. I have done things that I probably would not have done before. Granted I am not the same and I probably will never be the same, I am still a survivor (as we all are) and that is good enough for me.




beansy said:

The filters are gone with me, too. You are unlucky to have AVMs, but you are young and smart, and its so good you know the results are from the AVM. I never knew because no one ever told me, and when there was an internet, I figured it out. I always worried about what others though, but I don’t learn things at times. I am so much better than I used to be, and now think the hell with other people. I too have lost numerous friends. So never waste your life doing what I did - caring what people thought more than what I thought. Oh, well.

beans

I am lucky in one way for having had the AVM in 1959. I did not care about being how I was before because as a kid I had no idea I was different. I thought everybody had the same vision as me. It was not a thought really, but like walking, I could do it and so could …
The surgeon found my AVM (he called it an astrocytoma first) through the EEGs and then he did “EXPLORATORY SURGERY” which seems horrible to me now. He was apparently right on the mark. Even more horrible for me than the actual surgery were two other “tests” I had. They were really part of the first X-rays done on the brain to see what they could. It was an extremely grainy black and white picture, and the results of it were “inconclusive”; but they were torture.The EEG showed an irritation on the right side towards the back of my head. Good old EEGs, no pain. No fear. Vascular surgery was only begun on the brain maybe around 1940. It was only being done by Walter Dandy at Johns Hopkins in Baltimore. Then it got around to other hospitals. I also lived only 25 miles from NYC, and that was probably good, too. I have no records, but I wrote a letter to our family doctor maybe 20 years ago. He wrote back and said it was an AVM. I saw that and never heard of one, but I never forgot those letters. The doctor died shortly after I wrote him. Otherwise, I would still not know. My AVM must seem to a lot of you to have happened in another century. To me it seems like it was only a short time ago. That’s life. I still feel young.

beans

I know it’s now August and most people commented back in June but I wanted to add my two cents. I agree with all of the comments and I want to thank everyone for those but probably the best way to go about this is to ask both people that you know will be honest with you as well as what you notice to see if there is any noticeable social change after surgery. Granted most folks can not even understand what it’s like to have an AVM, I agree but those that love you will be honest with you. I just say this because I just don’t trust my perspective alone. Once you have feedback from both sides you can (and probably should) decide for yourself. Good luck. :slight_smile:

I was a very big risk take safety wise, a street racer and generally ten foot tall and bullet proof, but now that I’ve been through the embolizations and craniotomy to cure myself I don’t want to throw that all away. on the other hand I had been socially awkward and was never very outgoing with relationships because I was afraid of rejection and hurt feelings. now however it’s like I couldn’t care less about rejection, when I woke up from my craniotomy and my doctor told me everything went perfectly it was like a switch had been flipped and everything was going my way now. though sometimes people get on my nerves very easily I’m still in the first week of recovery and am dealing with alot of physical pain and medication side effects so that’s understandable I suppose. I have a left field of vision deficit that has kept me from driving like i would enjoy but I have gotten over worse things and wont let something so little get me down, if anything it just means I get a new dog and an excuse to take it with me everywhere I feel like going
:slight_smile: