Has any AVM survivors that had crainiotomies to remove the AVM had any lasting psychological disorders or issues such as severe anxiety or depression?
Hi JBuddle. I had my surgery August 2009. I had severe anxiety until recently. I still get anxious but it is not as intense. I also on medication for depression. I still have outbreaks of angry that are directed at my family. As time goes by things continue to improve for me emotional and physically.
I am currently struggling with the same exact thing - I am 3 years post-craniotomy and have never felt like the same person. I feel completely different psychologically, and feel like no one around me understands what I am going through. See my post here: http://www.avmsurvivors.org/forum/topics/3-years-post-craniotomy-no.
I can tell you this, though - you have come to the right place. This is a great group of people who will not only share their stories to make you feel less alone in your situation, but will also give you advice on how they overcome their difficulties. When I originally posted my story, one response did stick in my head, which I have now written down. It was from a member named Tina White. She said, "Honestly, you're not alone. You're alive after struggling with an AVM. Brain injuries are not to be taken lightly. It's not a surprise that your personality is different after your BI. The hard part is accepting the new you and making the best of it."
Best of luck to you, and please feel free to message me if you ever need someone to talk to!
Did you also have a bleed or no? Just curious. I also deal with all of these issues. Anxiety to the point where I was afraid to leave my house. I was on antidepressants for about a year and Xanax for acute anxiety attacks. The depression is better, I’m off the meds. but I still take a Xanax when I know I’m going to be in a situation that will be difficult for me, especially when I have to be in large crowds. I also have a tendancy to speak before thinking, which is not always a good thing. For people with brain injuries, the world can seem like a scary place sometimes. Ask your doctor if maybe an anti-depressant/anxiety medication would benefit you. Also, it might help to speak to someone, like a therapist or the like. None of us are ever really the same as we were but I’ve found that I kinda like the “new” me.
I had a craniotomy in early April 2008, and I'm still struggling with the effects. I didn't have many problems right after the surgery, but the anxiety, depression, and personality issues have become more pronounced as time has passed. I have also had strange sleep problems (tactile hallucinations primarily) since the surgery that all of my neurologists suspect are seizures but can't firmly diagnose; I'm going to a new (hopefully better) neurologist (my 4th in 2 years) in a few weeks to see about new meds to get these under control.
When my anxiety started to become really intense a few months ago, I finally decided to try a psychologist, since my neurologists haven't been helpful. The few I tried didn't want to see me because of my AVM background, but one referred me to a neuropsychologist. I've been seeing her for a few weeks now, and she's been extremely helpful. She actually takes into consideration the effects of brain surgery and other neuro problems on anxiety, mood, etc. and has been helping me find ways to identify and deal with some of my post-surgery weaknesses (for example, I still get fatigued very easily, and when I get fatigued, I tend to have a low tolerance to environmental influences, which in turn heightens my anxiety and emotional instability; solution: naps when I start to feel what I used to interpret as "sad").
Anyhow, you're not alone in feeling the long-term effects of brain surgery. My neuropsychologist says that I probably won't ever feel the same as I did before. I can, however, learn how to deal with the new me so as not to inadvertently exacerbate my problems. If you live in a city that has a neuropsychologist who will do more than testing (many of them only do evaluation, not therapy), I recommend you try one or two out.
Hello Jennifer. My wife had her surgery in July of 2009. Did you find that the medication is what stopped most of the intensity? My wife is now also on medication. Couple with therapy sessions it seems to have finally sparked some progress.
Jennifer Funke said:
Hi JBuddle. I had my surgery August 2009. I had severe anxiety until recently. I still get anxious but it is not as intense. I also on medication for depression. I still have outbreaks of angry that are directed at my family. As time goes by things continue to improve for me emotional and physically.
SF,
I have read your story and am amazed at the similarities you have with my wife. She too tells me often that it seems impossible for anyone to understand her and her situation. But I'm glad we found this web-site so that we can see what others are also going through and to share our experiences. That comment that you posted from Tina White is now also sticking with me and am very much looking forward to sharing it with my wife. It makes so much sense and is very comforting. Thank you so much for sharing.
SF said:
I am currently struggling with the same exact thing - I am 3 years post-craniotomy and have never felt like the same person. I feel completely different psychologically, and feel like no one around me understands what I am going through. See my post here: http://www.avmsurvivors.org/forum/topics/3-years-post-craniotomy-no.
I can tell you this, though - you have come to the right place. This is a great group of people who will not only share their stories to make you feel less alone in your situation, but will also give you advice on how they overcome their difficulties. When I originally posted my story, one response did stick in my head, which I have now written down. It was from a member named Tina White. She said, "Honestly, you're not alone. You're alive after struggling with an AVM. Brain injuries are not to be taken lightly. It's not a surprise that your personality is different after your BI. The hard part is accepting the new you and making the best of it."
Best of luck to you, and please feel free to message me if you ever need someone to talk to!
Trish,
My wife is the one who had the bleed. She had it on July 3rd 2009 and it was surgically removed on the 15th of that month. She too has been put on Xanax. She also preps with Xanax when she knows that anxiety is lurcking. She is also involved in therapy sessions now with a great doctor. She certainly is not at a place now where she is happy with the new me, but we're hoping that support from this web-site can help get her there. Thank you for sharing.
Trish said:
Did you also have a bleed or no? Just curious. I also deal with all of these issues. Anxiety to the point where I was afraid to leave my house. I was on antidepressants for about a year and Xanax for acute anxiety attacks. The depression is better, I'm off the meds. but I still take a Xanax when I know I'm going to be in a situation that will be difficult for me, especially when I have to be in large crowds. I also have a tendancy to speak before thinking, which is not always a good thing. For people with brain injuries, the world can seem like a scary place sometimes. Ask your doctor if maybe an anti-depressant/anxiety medication would benefit you. Also, it might help to speak to someone, like a therapist or the like. None of us are ever really the same as we were but I've found that I kinda like the "new" me.
Jenny, my wife shares so much with you! These types of issues also did not affect her until months after the surgery, and they are quite difficult for her to live with. And we’re from a small town in up-state New York about 13 miles from the Baseball Hall of Fame, but we’re lucky enough to have a local neuropsychologist who has helped her greatly in the past few months. He is working with her to try to get her comfortable with the new her. I am very sorry to hear that you were rejected for therapy based on an AVM history, but very glad to hear that you yourself found a neuropsychologist. I wish you good luck in your progress.
Jenny said:
I had a craniotomy in early April 2008, and I'm still struggling with the effects. I didn't have many problems right after the surgery, but the anxiety, depression, and personality issues have become more pronounced as time has passed. I have also had strange sleep problems (tactile hallucinations primarily) since the surgery that all of my neurologists suspect are seizures but can't firmly diagnose; I'm going to a new (hopefully better) neurologist (my 4th in 2 years) in a few weeks to see about new meds to get these under control.
When my anxiety started to become really intense a few months ago, I finally decided to try a psychologist, since my neurologists haven't been helpful. The few I tried didn't want to see me because of my AVM background, but one referred me to a neuropsychologist. I've been seeing her for a few weeks now, and she's been extremely helpful. She actually takes into consideration the effects of brain surgery and other neuro problems on anxiety, mood, etc. and has been helping me find ways to identify and deal with some of my post-surgery weaknesses (for example, I still get fatigued very easily, and when I get fatigued, I tend to have a low tolerance to environmental influences, which in turn heightens my anxiety and emotional instability; solution: naps when I start to feel what I used to interpret as "sad").
Anyhow, you're not alone in feeling the long-term effects of brain surgery. My neuropsychologist says that I probably won't ever feel the same as I did before. I can, however, learn how to deal with the new me so as not to inadvertently exacerbate my problems. If you live in a city that has a neuropsychologist who will do more than testing (many of them only do evaluation, not therapy), I recommend you try one or two out.
I am not sure if time or the medication stopped the intensity. It could also be therapy. I still am going weekly for therapy. I am wishing your wife alot of progress and you the understanding while she makes her journey.
JBuddle said:
Hello Jennifer. My wife had her surgery in July of 2009. Did you find that the medication is what stopped most of the intensity? My wife is now also on medication. Couple with therapy sessions it seems to have finally sparked some progress.
Jennifer Funke said:Hi JBuddle. I had my surgery August 2009. I had severe anxiety until recently. I still get anxious but it is not as intense. I also on medication for depression. I still have outbreaks of angry that are directed at my family. As time goes by things continue to improve for me emotional and physically.
i had a craniotomy 18months ago and was doin a lot better,but I had a seizure last week and have been very very depressed ever since
JBuddle -
I'm so glad that I could offer you and your wife some support. Please feel free to message me any time if either of you want to talk one-on-one. I have found this forum and the people on it extremely supportive and caring, so you are absolutely in the right place!! I think another important thing to remember is that no one's healing process is the same, so don't ever let anyone tell your wife that she should "be over it by now" or that she is ungrateful and should "just be happy to be alive." I have been told these things for a long time now, by both family and doctors, and all it has done is caused me to emotionally distance myself from almost everyone, including my husband. From reading your posts, however, it appears that she has a strong support system in you, which I think is vital in all of our recoveries.
I wish nothing but the best for both of you, and hope that you find the answers that you are looking for!
Sarah
JBuddle said:
SF,
I have read your story and am amazed at the similarities you have with my wife. She too tells me often that it seems impossible for anyone to understand her and her situation. But I'm glad we found this web-site so that we can see what others are also going through and to share our experiences. That comment that you posted from Tina White is now also sticking with me and am very much looking forward to sharing it with my wife. It makes so much sense and is very comforting. Thank you so much for sharing.
SF said:I am currently struggling with the same exact thing - I am 3 years post-craniotomy and have never felt like the same person. I feel completely different psychologically, and feel like no one around me understands what I am going through. See my post here: http://www.avmsurvivors.org/forum/topics/3-years-post-craniotomy-no.
I can tell you this, though - you have come to the right place. This is a great group of people who will not only share their stories to make you feel less alone in your situation, but will also give you advice on how they overcome their difficulties. When I originally posted my story, one response did stick in my head, which I have now written down. It was from a member named Tina White. She said, "Honestly, you're not alone. You're alive after struggling with an AVM. Brain injuries are not to be taken lightly. It's not a surprise that your personality is different after your BI. The hard part is accepting the new you and making the best of it."
Best of luck to you, and please feel free to message me if you ever need someone to talk to!
my speech has a real problem for me, i lost the power totally. Then going to groups, new people, was a real ordeal - something i never had any problems with. I would get so nervous, that my hand would shake! Because my speech was so bad. It used to be very embarrasing. Now tho and over time, my speech is much better, so im a lot more relaxed. I did have a pill to help me control my nerves, which really helped. i no longer use it tho.
Richard,
I'm very happy to hear that your speech is improving! After my wife's AVM, her eye sight took a heavy blow and had to see a neuro-optimologist for several months. She too would also become very anxious and nervous around groups and crowds. We had to totally avoid it for a while. She has improved a lot though during the recovery process. The more your speech improves, the less stress it will take on you. I'm also glad to see that you have the strength to no longer need the medication. Keep up the good work!
Richard Denning said:
my speech has a real problem for me, i lost the power totally. Then going to groups, new people, was a real ordeal - something i never had any problems with. I would get so nervous, that my hand would shake! Because my speech was so bad. It used to be very embarrasing. Now tho and over time, my speech is much better, so im a lot more relaxed. I did have a pill to help me control my nerves, which really helped. i no longer use it tho.
I have defenetely noticed that a lot of progress will take place and then a setback can cause wicked sadness. I try to think of the two steps forward, one step back rule, and that setbacks are going to happen and that it’s just another obstacle in this unwanted journey.
mary kate said:
i had a craniotomy 18months ago and was doin a lot better,but I had a seizure last week and have been very very depressed ever since
I am 1.5 years post craniotomy and I am experiencing anger. Before my AVM bled I worked in a place where I feel there was quite a lot of stress and at times the work environment could be hostile. I don’t know if this was the trigger that set off the bleed or if it was just a matter of time. I have recovered physically but emotionally I find myself getting angry mostly at work, as my Dr. released me to go back to work. I have been back to work now for a little over a year. When I feel someone is giving me a hard time at work, especially the people who gave me a hard time before the bleed, I just want to tell them to bugger off. I get angry because part of me feels that they need to back off and give me space because perhaps it was that particular behavior toward me that set off the bleed. I find I can’t focus as easily as I once did, I tend to forget easier. Though, despite all that, my supervisor thinks I still do a bang-up job. As a matter of fact my supervisor and I get along very well and have a very good working relationship. Some people get upset at me and will say things like “you’re not paying attention again.” “I told him you were just being your neurotic self.” this makes me angry, I was near death and I still struggle a bit with the things mentioned above and I just get peeved over these unkind and uncalled for remarks. So yes, I do struggle with some psychological disorders. You are by no means alone.
I’m 4 years post my craniotomy. I have anxiety issues, particularly in the last couple of years. (been having serious sleep anxiety lately) But even before my AVM I knew i had some anxiety/social problems. So I really don’t know if to blame the AVM or not (maybe it was the AVM even before it ruptured/had surgery). I have also been up and down with depression, though I wouldn’t say it’s severe or even that serious. In fact the worst depression I had was 2 months post my AVM rupture/craniotomy, since then I haven’t had anything near as bad.
Hi SF - Totally agree. Someone else once wrote on here that I'm jealous of my old self. I guess that's why the one cliche is so popular: Hind site is 20/20. I think that there's really no option but to go through the 5 steps of loss - denial, anger, bargaining, depression, and acceptance. We lost our old selves and have to make a new life plan - talk about a pain in the butt.
Hey Trish - I'm looking up this topic since someoone of my new neighbors mentioned it, plus anxiety seems to be hereditary. I'm home a lot, but I don't get bored or lonely (maybe a different story without two very vocal 15-year-old cats) - just kidding - it has to do with more of a transportation/lack of public transportation issue and also weather and bathroom issues - hooray for me. Can you tell me how I would know? (btw - I had a bleed - the AVM was in my cerebellum - had emergency crainiotomy then cotterized and removed like 1 month later - it's been 3.5 years since my emergency crainiotomy.)
Hi JBuddle,
I had a crainiotomy the first week of December. While the AVM was removed I still suffer from 2x vision, which all of my dr's, including my neuro-opthimologist, say is temporary. I hope this is true but I still have the 2x vision and I'm not sure if it's getting better. Maybe a little? Anyway, I figure it could be a few more months before I get any significant improvement. Good luck!
G.