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Comment by Carol Phillips on January 12, 2013 at 10:51pm

Shelby,

  Thank you for your note. I haven't really noticed a change in my son's behavior since the two surgeries in July. Honestly.  His demeanor . . he has been a challenging kid since birth.  I call him on what he utters. Maybe it is from having the tumor in his head, I don't know.  I would LOVE to chat with your mom!  I need someone to talk to.

I cried most of last night becauese 1) I took care of a horrible patient (pure evil). That triggered my stress over this third surgery coming up.  I am supporting my son, but I was SO tempted last night to text him, "WAIT!!"  "Don't have the surgery!"  Watch and wait. . . He is worried about it growing and, later, down the road NEEDING to have it out and not having good medical insurance. . . I am scared.  Thank you so much.

  I hope your feelings of anger will begin to disappear.  This isn't a brain tumor, but I used to have severe PMS (later, at a nursing converence, I learned about 'Dysmorphic PMS'.  I KNOW that is what I had. I would feel pure rage at  . . nothing----or, suicidal, before my periods. It was awful.  BUT, if I stopped to think about why was I angry and think about what time of the month it was, I was able to deal with the 'problem' and better control my feelings.  Does that make sense?  I know having brain surgery is much different but maybe the premis is similar.  :)

Comment by Shelby Melton RNS on January 11, 2013 at 11:37pm

Hey Carol :) I know it is probably difficult trying to care for your son and he is not himself anymore. You should sit and talk with my mom about somebody being harsh :/ I have been a pretty mean person myself at times. My personality has changed pretty dramatically. Pretty common with brain tumor patients I am finding out. Try not to take it to heart too much because he does not have a lot of control over what he says and how he acts and he more than likely does not like it himself. Try to be patient. The more understanding you are the better his behavior will become. Speaking from experience. And sometimes it's better to just ignore him, give him his say and then some space to sort out his feelings afterward.

Comment by Carol Phillips on January 9, 2013 at 7:29pm

My son is still on Keppra.  The doctor wanted to keep him on it one year post-op.  Now that he is going in for his THIRD  surgery in a couple of weeks, I suppose they will keep him on it still.  Anger? He does, but I think it is HIM. . . I could be wrong. He can say some pretty harsh stuff. It would be nice IF the Keppra caused it. They could switch meds.  I am really scared about this next surgery, scheduled for January 25th. It will be at Harborview Medical Center in Seattle, WA.  The neurosurgeon is L. Sekhar, MD.

 

Comment by Shelby Melton RNS on January 4, 2013 at 5:31am

Thanks Jim :) I am on Keppra as well.  I was taking it before the surgery for seizures but did not have anger problems at that time.  I started having the real emotional problems after the surgery.  We discontinued the Keppra about 6 months after the craniotomy and for 2 years I did not have any seizures but did still have the anger problems.  Had a grande mal seizure about 6 months ago so back on the Keppra because I am allergic to Dilantin.  I do have some important information regarding Keppra that I will be blogging on soon.    

Comment by Jim Perakis on December 31, 2012 at 7:04am

Shelby - A question: do you have seizures and are you taking medication? I have been on Keppra for several years and found that I had serious anger problems as a side effect. My neurologist suggested vitamin B-6, which seems to have helped (or just has a placebo effect). I expect that surgery is in my future, and I'm beginning to understand the range of possible side effects. I sincerely hope yours improve over time.

Comment by Shelby Melton RNS on December 31, 2012 at 4:26am

It is amazing.  Just knowing others can relate to what I have experienced with the emotional upheaval caused by brain tumor and surgery has made a tremendous difference in how I am able to respond to these feelings.  Thanks to those who have shared their story with me!  :) 

Comment by Shelby Melton RNS on December 18, 2012 at 1:04am

Such a relief to hear someone else admit they have feelings and thoughts that come up that are what others would find "horrible". It comes up when you least expect it. Hard and fast! You feel bad about it later. But it is what it is and its not intentional. We are just highly emotional. And nobody can understand if they havent experienced it. We look so normal on the outside so people dont get that we are not the same normal on the inside. Thank you for sharing! Now i dont feel like the monster inside my head! :)

Comment by Beth Rosenthal on December 17, 2012 at 9:46pm

For many years, especially the years when my nerve pain was horrible, I didn't care about anyone. It's embarrassing and upsetting but, my mom used to hear "run 'em over" or " maybe they'll crash into a tree" all the time. I hated the world, with the exception of my one cheerleader, my mom. I wished everyone would suffer like me. I shouldn't be ashamed because "how would you feel being in horrific pain ( being electrocuted) many times per day for decades?" I'm much nicer and more compassionate once my pain was under control, in 2002. But I still get fits of anger and disgust by people I know, some friends, who truly don't get whatever issue is being discussed. I lost my childhood and young adult life being sick, age 11-28. I missed caring about my education. Although I have my BA, I'm not using it since I'm on disability (for now, until IJB applies for a grant). I make little money and I'm grateful to my parents because I don't know where I'd be without them. I get angry listening to relatives who say that they want money for a new car, new clothes, etc. or they complain about almost anything because they don't EVER give my situation any thought. I'm disgusted by people who can't think beyond themselves and their immediate family. No one ever said " it must be really tough living off of disability" or " how do you do ... with only one good hand?"

You're not alone with this Shelby.

Comment by Ann Manzi on December 15, 2012 at 11:11am

Shelby, Thanks for the email back so quickly. I think seeking professional help is the best way to combat the emotions that challenge you. Hope to write back and forth. I am at work and will catch up with you later. ann manzi 

Comment by Shelby Melton RNS on December 14, 2012 at 9:06pm

Thank you Ann :) I am actually 2 and a half years post-craniotomy as well. I seem to have lost the ability to keep feelings of anger from coming up at inappropriate times for no reason or if I'm stressed or fatigued. My tumor was in the right temporal lobe and the research I have done-actually through the websites you mentioned as well as others-and that seems to be the area where hostility and other emotions come from. I plan to see a neuropsychologist soon to see what can be done through therapy.

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