What to expect now

When the Dr.'s said they wanted to remove my husband's Cerebral AVM, they said that they wanted to get him back to doing what he was doing before the surgery. The only thing we expected to happen was some visual problems and recovery from surgery. The surgery was on Nov. 6th this year and I know it's not been that long, but my husband is having problems with multitasking, concentration, retaining information, remembering things, motivation, mood swings, depression, fatigue, etc.. He continues to have seizures as well and is on Topamax and Keppra which I know affects mood (which doesn't help with his mental issues either). All of this is catching us by surprise. I see and read that others in the AVM Survivors forum are dealing with these things as well and I don't dare tell my husband Bobby yet. He is very frustrated with what he can't do anymore. I wanted to know if this is going to be something we will have to deal with the rest of our lives? We go to his post-op appointment next week and are making a list of things to discuss with his Neurosurgeon.

Hi, OB88 - It's great that you're keeping a list of questions for the doc. (S)he will be able to speak more specifically w. familiarity re. your husband's case. Many people here (including me) have cognitive "fuzzy" moments, or worse. I for one, got hurt in a part of the brain commonly known for motor control, and although I am considered to be cognitively intact, I find it hard to believe the damage (there was massive bleeding and significant excision) was isolated. So I do stuff like Lumosity and besides all the games we play(ed) in Therapy I read what others have to say here about being intentional in your thinking and planning, e.g. setting timers on your phone for tasks, making good lists etc. I can imagine the frustration level. Hang in there! www.annninglearninghow.com

It is still early days yet, oceannablue, and much can change and improve for your husband. The brain takes time to heal. Keeping a diary of any problems can help guide discussions with your neurosurgeon. Be as specific as possible when journaling your husband's experiences. A journal is also helpful for helping you both to notice improvements that happen gradually.

I had many of the symptoms after my surgery. It’s very early days as the others have said. For me most of the issues resolved, though the depression remains as does epilepsy. The other things took time, but resolved. You’re probably sick of the phrase take it one day at a time, but it is the thing to do. I think the others’ suggestion of a journal is really good. You might want to keep a section of it (not necessarily to show others) of successes. These might be very small things your husband manages that he couldn’t do the week before, or if he successfully does something a few times. That could just be for you, or you could share with your husband.

If your husband is able to read then it may be worth making some cards for routines such as what to do vin the morning (depending on what things he forgets. A list could also help with motivation to at least do the basics. If the really basic things are fine in the evening you could make a list of one or two things you will try to do the next day. Again that may help with motivation or memory loss.

Meanwhile see if you can get support yourself. I’m sure you are frustrated at the situation as well so come here or talk to friends or relatives about what is happening and maybe get help with practical things like shopping.

Thanks Ann

A journal is a good idea. I have been sending messages to both Neurologist and Neurosurgeon as to what is going on. It is part of my husbands permanent record and I think it keeps my husband toward the front of their mind instead of them putting him in the back of their memory. Thanks for the encouraging words.

Thanks GM2013 for the encouraging words and suggestions. It is frustrating. I am glad I found this site.

i was told after my stroke that i would see "improvements" for 18 months. there will be improvements afterwards, but most is regained during those first 18 months (some say 12 months, some longer). i reached my 18 months last week and feel a whole lot better now but, i'm afraid to say, not 100%. i had all the symptoms you mentioned....now, i have less "fuzzy" moments, take less naps, i can move my "weak" side better, and i can read! i was an avid reader once but i read at a new pace now. we can't change things that have happened to us but we need to keep on keeping on. that's where i'm at 18 months post hemorrhage. i'm learning to live with my new normal and the skies are brighter now... take the bull by the horns and good luck! it's early on in his recovery...

I’ve had a lot of similar problems. They told me I might grow out of the seizures, other doctors have told me I’m too old. Honestly, I’m so frustrated, but I think we just have to learn how to live with it, and take everything one day at a time. It took me a solid year to get back to some semblance of old me, and I’m still not back there, they told me the “old me” was gone & I’d have to adjust to the “new me,” which has been working out. The multitasking, memory, and concentration all get better with time and rehab. I’m still working on my memory, but I’m hoping I’ll be back there again someday…


In my adult daughter's case, it took about a full year before she was back to normal functioning. During that year, she became very depressed, something she's never experienced before. She started seeing a counselor on a very regular basis, and that helped tremendously.

I think it's so important for people who've been through this (including we who love and care for them) to receive counseling as they recover. It is such a jolting, life-changing experience to have this event happen to a person. It's so important to work with a good counselor to deal with the inevitable reassessment of one's life that happens. One's basic security has been lost. It's important to work with a therapist to deal with that, and to learn how to approach life in a way that takes that into account.

Thinking of you...

I agree with you DW on getting some counseling after something like this. For about a year after my aneurysm surgery after my rupture, I was dealing with PTSD. I had never felt anything like that before and when I talked to my doctor about it he told me it was totally normal and to be expected. When you are discharged from the hospital they prepare you for so much of the physical aspects of what to expect but they leave out the emotional issues and struggles you may start to deal with.

He suggested that I see a counselor to talk to and I also tried acupuncture which worked wonders for me. I think that everyone who is dealing with an AVM issues, even if they have not had it treated yet should speak with a mental health professional to deal with the emotions they are feeling.

You hubby is in the early stages after surgery. It too me a good little while before my brain felt like it was back to where it was before everything happened but he will get there. A year and a half ago I thought my life had stopped as i knew it after everything that has happened to me, but since my surgery I have accomplished so much!

Please keep us updated on how he is doing!

Lindsay...it is so true that the doctors prepare you for what to expect physically, but they totally drop the ball on the mental part of the healing. Hubby is seeing a Psychiatrist, but it would have been a lot easier to prepare for if we had known about the mental. It's harder to heal from that point of view than the physical. We are still hanging in there though, Thanks