Behavior issues years after temporal lobectomy

[Abnrigger]

Hello all, I am new to the forum. I have been married 22 years to an amazing woman who lived with epilepsy from birth until adulthood. She had a temporal lobectomy in our first year of marriage and has been seizure free since. Over the years I have seen her personality change subtly. Almost 2 years ago, her Mom passed away unexpectedly and now she is withdrawing completely from friends, family. I suspect that there is much more going on than just depression over the loss of her Mom. I want her to seek help from a neuropsychologist or a psychiatrist but she says she doesn't need any help from anybody and that it's pretty much all my fault, I put my career ahead of the family, etc. I really don't know how to negotiate with her to get her to go see someone. We received no counseling or post-op information about behavior changes that might occur. Based on what I've seen and read about TBI (I'm in the Army) and researched about temporal lobectomies, there is a high rate of depression, introversion, antisocial disorder, anger management, etc. that can occur years afterward.

 

[Cint]

Hi Abnrigger and welcome to the forum,

I'm happy to hear your wife has been seizure-free since her lobectomy. Unfortunately with some, there is a personality change, like you mentioned. I had a left temporal lobectomy back in 1990 and was seizure-free for 14 months. But before the seizures returned, I did start slipping into a deep, deep depression like I have never experienced before. I was seeing a neurospychiatrist for years after my surgery because of the depression. He called it 'Dysphoric Disorder".

http://www.epilepsy.com/epilepsy/behavior_personalitychanges

Dysphoric disorder and depression

Dysphoria means loss of pleasure or joy. (You may know the more common word euphoria, which means extreme joy. They share the same root.) Many people who have epilepsy experience dysphoric episodes. These episodes, which can last between a few hours and a few days, consist of depressive moods, irritability, lack of energy, pain, anxiety, insomnia, and euphoric moods. Usually they are part of a syndrome known as interictal dysphoric disorder instead of being linked to recent or upcoming seizures.1 (Interictal means "between seizures.")

People with interictal dysphoric disorder (IDD for short) aren't always depressed; there are times when everything is OK, and times when everything is not. These times are connected to seizures, but not the way you might think. Often IDD is discovered or becomes worse when seizures are fully controlled or less frequent. Some scientists believe that the same chemicals and paths that slow or stop seizure activity also lower levels of other brain activity; this change can be linked to depressed mood and many of the symptoms of IDD.

What's the difference between IDD and depression? Some people have long, severe, and consuming dysphoric episodes. These people have a different mood disorder: major depression. Many of the symptoms are the same as in IDD. The difference lies in their severity. With depression, these symptoms are present for 2 weeks or longer without letting up. Thoughts of death appear repeatedly and suicide may be considered or attempted.

In the general population, about 5% to 10% of people are affected by depression or a related mood disorder. The percentage is much higher for people with epilepsy. (The exact numbers vary depending on how the study is designed.) If you have symptoms of depression or IDD, please talk to your doctor. There are many treatments that can help you. You just have to ask.

And to this day, I still struggle off and on with depression and still take an anti-depressant.
I hope your wife will re-consider getting help. Sounds like she is grieving, too.

 

[arnie]

Hi and welcome! I can't really speak to what personality changes you would expect to see 20-plus years after the surgery, but there is a definite possibility that the depression and associated changes are related to the death of her mom and also the stage of life she is in. Very often people in their 40s begin to reevaluate their lives and wonder if they have been doing the right things, if they are missing something, if something needs to change. The death of someone close also brings to mind their own mortality and can get them to thinking about things more deeply. My suggestion would be to look at this as an opportunity for you and your wife to go see a counselor together, work on whatever marital issues are coming up, and give your wife a chance to talk to someone who will be supportive of what's going on with her. She clearly has some thoughts about your relationship, and I think it would make a lot more sense to work on things from the perspective that you have an opportunity to get better communication in your marriage, to hear what she is saying and feeling and work on that as a couple, and not from the idea that there is something "wrong" with her.
(For what it's worth, I've been married for almost 34 years, have been a marriage and family counselor, and have had my share of counseling myself so I have a pretty good idea of how things like this go.)

It won't necessarily be easy or a quick fix, but it will be worth it! Good luck and let us know how things go!

 

[Cint]

Hi and welcome! I can't really speak to what personality changes you would expect to see 20-plus years after the surgery,

The one I mentioned is a good place to begin. Dysphoric Disorder is a common thing for those who have had surgery, especially women + hormonal issues.

Also, maybe his wife needs to go to an endocrinologist and have hormonal issues checked out.

(For what it's worth, I've been married for almost 34 years, have been a marriage and family counselor, and have had my share of counseling myself so I have a pretty good idea of how things like this go.)

There is a huge difference between marriage counseling and going to a neuropsychiatrist/neuropsychologist after BRAIN surgery! I was never a counselor myself, but went to a marriage counselor for years after my brain surgery and depression because my idiot husband didn't understand why I was soooooooooooo depressed. For something this complicated, a "regular" marriage counselor isn't going to work. Unless you've been thru the surgery and depths of depression afterwards, there is NO way you would know how it works!!!!

 

[Abnrigger]

Thanks to both of you. She has had these mood swings since the surgery, although she refuses to admit it. She is now withdrawing from family and friends. I am no saint, I am seeking counseling to try and be a more supportive husband, she refuses to see anyone or go with me. She says she sees no point in it.

 

[Cint]

And this can be part of the depression/mood swings that goes along with it, being in denial. But at least you are being a supportive husband and doing the right thing. maybe the therapist can help you persuade her to see a neuropsychiatrist. It can get better, but she needs to do her part. Keeping my fingers crossed for both of you. Hang in there.

 

[Abnrigger]

Thanks Cint. I'm not giving up, I love her very much. I've got things to work on also.

 

[arnie]

I'm glad you are open to both ideas; the probablity that it's a combination of issues, and also realizing that you play a part in all of this, too. As I am sure you know, people and relationships are very complicated, and I doubt that it's ever just one thing that's wrong, especially with the various other stressors in your lives right now. Also,, you said you were in the army, and assuming you've been in a while, you could be getting close to retirement, which is another stressor. I don't know if you have kids, but if you do they could be in the process of leaving home, which is yet another issue. Seeing a counselor, in addition to looking into the neurological aspects, would probably be very helpful in helping you both to get a handle on what all needs to be looked at.

 

[Abnrigger]

Yes to all of those Arnie

 

[qtowngirl]

welcome abnrigger,
interesting issue, with many different views that's for sure. my first thought aside from the surgery is the sudden loss of her mom. this requires much understanding (support) from a spouse, whether she wants space, withdraws for awhile, wants to deal with feelings on her own, etc. that is such a devastating thing, esp. depending on the reason. if you don't mind me asking, what was the reason for her death?
i was with someone for 12 years and his mom got cancer suddenly and died within a year. that was almost 18 years ago (dec 22 - hugs darling), and he still isn't the same, never will be. and same as brain surgery as cint said, unless one has gone through it and knows that range of emotions, the only thing you can do is be there. for whatever she says (or simply shows) that she needs.
re: surg. that is an amazing amount of time to be seizure-free, whether post-surg or not. hugs to her from us! i agree with cint on that as well, to be safe she should see a neuropsych (iatrist or ologist), just to check mental levels etc. probably a small chance it's something other than real depression, but like anything, best to eliminate the possibilities. also as arnie said, if you can find it in yourself to attack this as a 'couple hurdle' rather than being against each other's thoughts and needs, outcome is likely more positive.
i am 4.5 months post-op myself, and find your info interesting. 2 weeks after surg i was emotionally put through one of the worst things in my 35 years, but (with a few very strong women in my life) got through it. and stress has always been one of my seizure triggers!
the mentality now is if i survived that, i can do anything, and i've kept myself above the ongoing pain and stress around me of that event. keep myself out of the devastation, and stay as positive and excited about my future that i possibly can. all the chips around me can fall where they may, as long as i'm seizure-free that's all that matters.
best of luck to you guys and pls keep us posted