Please help!

Hi, my name is Dustin, and my wife had an avm rupture and then removed from her right temporal lobe about 3 yrs ago. Since then she has had a lot of seizure’s, and emotional problems that turn violent most of the time. Her biggest concern is the loss of her independence, and not being able to drive anymore. She is seeing a neurologist, and taking meds, but they are not helping much. I was wondering if anyone else was having the same problem, and had any advise for me.We have 3 small boys, and I am at a loss of what to do. It is getting really hard, and i’m afraid Im not going to be able to hadle it any more. Please be somebody out there that can help me PLEASE. Thanks, Dustin

Hi Dustin,

Asking for help is a good move. I can imagine how rough this is on all of you. In my experience, it’s really hard to separate the problems that are medical from the ones that are purely emotional and based in the stress and fear that can come with an AVM. The person who survived the rupture is sometimes using all their resources just to try to have a normal life, and doesn’t have a lot of energy or compassion left for others. You’re not alone in dealing with this.

Is your wife’s neurologist an epileptologist? These are neuros who specialize in seizures. They stay up to date on all the seizure research and newest seizure meds, so they can do more for seizures than an ordinary neuro. There are many different meds your wife could try, in the hope of finding one that gives her control over her seizures. Seizure control can really improve emotional control, too. (You can look for a local epileptologist here: http://www.aesnet.org/go/find-a-dr)

My husband’s emotions improved dramatically when his new epileptologist figured out that the drug he was on was controlling low-level seizure activity in his frontal lobe, but NOT in his temporal lobe (his AVM straddled both lobes), and switched him to a different med.

Another thing that could help is therapy. A neuropsychologist would be aware of the fact that the brain has been changed and the consequences of this, at the same time as they’re aware of the effects of stress and adjustment and fear and so on. Your doctor should be able to help you find one. In my opinion, you really want to find one who works on strategies with your wife–how she can manage anger, how to know when she’s getting too tired, etc–as well as talking through how things have been for her. Ideally, the neuropsych would want a session or two with you as well, to understand the full family situation from as many angles as possible.

I hope some of that is helpful.
-J

Hi Dustin,
First welcome to the group, glad you found us. I’m sorry your family is having to deal with this, it’s not easy I’m sure. The emotional changes are something that I too deal with, although I’ve not turned violent, just angry. I too am no longer able to drive, or work, or live by myself ever again (not that I’d want too, but…). Losing one’s inependance is incredibly frustrating, difficult, and just down right sucky sometimes! Especially for those of us who were so independent before our bleeds. Some of what your wife is experiencing is, I think, completely understandable. The first thing I would suggest would be to talk to her doctors. It could be that her anti-seizure meds are exaserbating an already volitle situation. Perhaps a different med could help. Also, if your wife has not seen a therapist of some kind, I highly recommend that too. If she would be willing to join this group, that could also help. For me, just knowing that there were others who really understood what I went through, what I am still going through has been invaluable. I’m sure you and your family empathize and are helpful, but no one can truly understand how we feel unless you’ve been there. Although each of us have our own individual circumstances, those of us who have survived a bleed all share a common bond. So, perhaps encourage your wife to join this group. It’s a great placde to just vent when you need to. Also, I would encourage you to talk to a therapist as well. I know how hard this is on the spouses and families. I’ve seen my own husband and children go through it. A lot of times it’s just as difficult for you to deal with as it is for her. This is something that changes our lives forever, but it doesn’t mean it has to be for the worse. I’m a little over 3 years post bleed also. I struggle sometimes myself. But for me, most days are good ones and I am so thankful to still be here for my husband and my two girls. Please feel free to contact me anytime if you would like to. Also, tell your wife the same. We’re all here to support each other and help in any way we can.

Hi Dustin,

You have a very difficult situation. I would also encourage you and she to go to counseling, as well as seek more medical guidance to see if the seizures can be controlled.

Feel free to post any questions here. We’ll try to help.

Ron, KS

Thank you JH, I will def. cheak out that site, and yes a lot of your answer is very helpfull, god bless.

Thank you Trish, and she is on here. Her e-mail is ■■■■■■■■■■■■■■■■■■■■■■■■ I am sure it would be very helpfull if you could add her as a friend, and yall could talk. Thank you once again. Dustin

Thank you Ron!!

Hi Dustin. I agree with what JH,Trish and Ron have suggested. This link might have some helpful info…
http://www.tbiguide.com/angerdepress.html
Plus this one…
http://www.givebackla.com/?p=1122
I do not know how far you want to drive but Kimford Meador, M.D., is the Director of the Emory Epilepsy Center and Professor of Neurology at Emory University in Atlanta, Georgia. He is considered to be one of the best seizure specialists in the south. His office might be able to recommend an epileptologist near you. I believe I have his phone # if you want it.
I am already friends with your wife on here and I think she knows she can contact me anytime.

Thank you Barbara H. I would drive to the ends of the earth for her, she is the love of my life. I just want our life to be back the way it was before the sergery. The only prob. is her insurance is sc medicade and it only covers so far, but if you think he might could find someone to help her I would love to have his number. And thank you so much for being her friend, she needs kind people like you that has been through the same thing and knows what it is like first hand. Hope you are doing well. God bless.