Hello everyone, I do not have an AVM nor have I ever had one. I am here because someone that I hold very dear to my heart, that I care about very much has had one before. She in fact has had 3 brain surgeries, and is AVM free today. However, the part of her brain removed was part of the frontal lobe where emotions are dealt with. currently she is feeling numb and unattached to everyone and everything. she feels absolutely nothing. It breaks my heart. Have any of you been through what she or myself is going through? how did you cope with it? what did you do to get past that dark phase in your life after your surgery? she is does not feel emotions anymore, she doesn’t even want to see anyone because of her lack of connection. what can I do to help her? Please if you have been through this or something similar, can you give me some advice??
Matthew, This can happen after surgeries or a bleed, I myself seen a large change in my emotions, These have changed over time, But initially I was angry all the time and at nothing really, I also felt more emotional in ways, But all of this has changed over time (years) and has gotten better, There is always hope, we all just have to fight and fight till you cannot fight any longer, Just be there to support her tell her she’s no alone and make sure she gets as much rest as she needs, As I found that sleep helped with recover from the initial surgeries I had and tried to get as much sleep as possible even now as it still makes me feel better. Take care and I hope things get better for her soon.
Martin
Thank you Martin, I appreciate you responding. As you know this is not easy, Not for her, not for me either. I will keep supporting her and praying she gets better. once again, thank you!!!
Hi Mateo,
What Martin says has also been my experience, your friend has had three surgeries. More medical procedures than some people manage to go through on any part of their body in their lifetime, let alone the brain. In preparation for any surgery I think you always go through a whole range of emotions, you can feel so much and spend so much time understanding things and re perceiving the world around you- this seems to be true particularly for heart and for brain surgery. These two organs are so culturally significant and societies perceive both in so many ways. Brain surgery as a thing as an idea feels like allowing someone to interact with the mechanics of your brain. The skull is designed as a closed unit, I used to think of it when I was waiting for surgery as a closed computer device- like a Mac- there are no screws to take the sides off like a PC- this I found hard to handle afterwards- but pre surgery this is how I explained my anxiety to myself. But it also helped me understand other people’s reactions to the surgery- this is how I realised they perceived me or in a similar way. I only went through this once- your friend has been through it three times- it wares you out, I got tired of thinking and feeling.
I was quite calm pre surgery and in the month or so afterwards I just felt like the Nina Simone song “I got life” most of the time I couldn’t believe I got through it- euphoria. But then the mood swings started when I got tired. I got angry a lot and sleep alleviated this, it was hard for my partner, but when I was raging he just let me get on with it and didn’t really react and suggested we went for a walk or went for a lie down.
But your friend has been through this rollercoaster three times, it’s a lot- a hell of a lot -I know and still know that although I too am AVM free I still do not trust my body will not let me down, I am always on guard. As with all of these things it’s time, it’s not like a broken limb, there are so many things that need to heal with brain surgery. Sometimes I think it’s renewing your own trust in your own body- this is not over night, but one day when you’re almost looking the other way you realise a lightness of being and then you catch yourself thinking I don’t feel so bad today, it’s ok in here. Brain surgery is a perfect storm of things, a psychological and a physical injury that you have agreed to, its a lot to take on board. Be kind to your friend and be kind to yourself and I hope the good will circle between you.
Laura
Thank you very much, I appreciate you taking out the time to reply and try to help me understand. this is indeed very tough for me. i know how tough it could be for an AVM survivor. I am praying that her and I get through this difficult time.
It’s good you are trying to find ways to understand- it’s equally important to consider the way in which you friend found out about her AVM and then had her first surgery. You will see from the experience of other people on the site that sometimes people are suddenly in a crisis situation- they will have been feeling unwell for months or on and off for years and then they are suddenly blindsided by an incident where they are taken to the Emergency Room and and doctors managing their care elect to do surgery on their behalf to save their life and limit the damage a bleed can do. This is a lot to rationalise during recovery- a lot of coming to terms with your body and what it can do in every single sense.
Finding you have an AVM in the first place and it’s circumstances is profoundly affecting. That causes you to go through so many different emotions. When you wake up after the incident, certainly in my experience your relationship with your body shifts. I found my AVM from two massive seizures, one in a shop in central London, one at home witnessed by my brothers. Dealing with your own emotions and dealing with the emotions of other people has been so difficult- their anxiety about what is happening, your anxiety and dealing with a new landscape is so hard- it’s so much information to process and make sense of. Then and now there are times when I think too much information I just want to shut my eyes and not have to think or to feel. It gets better but it is a slow process.
thank you Laura, I am coming to realize it is never what it seems. This is the time she needs, sometimes stress can be a trigger for her. It’s important for her to be as stress free as she possibly can be. thank you so much for messaging me, and giving me more knowledge on this subject. she indeed has been through a lot, and I just need to be there to help her cope!
Let her know and be aware of the fact that, as an AVM survivor, one’s recovery can take a long while; on June 5, 1987, I had a 14-hour craniotomy.
I was re-mainstreamed into public highschool in the Spring. Other than anticonvulsants that I took for one year, I took no other drugs and am happy as could be. Emotions have never had a thing to do with my recovery.
The reason why brain injured individuals seem like they require medications, other than anticonvulsants, is the fact that they are brain-injured and need time to bounce back.
After a year, I had to return to Canada, from Baltimore, where Johns Hopkins is and I lived and was almost killed in JHU’s critical care ward, by meningitis, to have Dr. Peerless provide me a schedule to use to ween myself off Dilantin.
The idiots at Hopkins refused to provide a schedule. The University of Western Ontario gave me a system by which I was off the drug in 6-9 months and I never had any problems.
Thank you @Dickd
@mattramzzz Thank you as well, we are getting through it, it has not been easy. While she cant feel her emotions, I can feel all of mine, and what feels like hers. It hurts me to see her like this. Anyways I am trying to stick around the best way I can without being to over bearing. Im getting better, I hope this gets better, thanks for the input.
Let it be known that my emotions were stunted, due to the massive trauma I’d sustained; but, when they did return, a fair amount of cognition resurged, too.
I graduated high school, entered undergrad school and, 3-4 years into my bachelor’s degree, things started communing back.
You’re welcome, I wish I had found this site after I had the operation two years ago- well it will be in June. Reading other people’s experience is good but also each person’s is unique. There are overlaps but there are things that will be very different. I was looking lucky enough to diagnosed with PTSD by the neurosurgeon treating me, I thought I was loosing my mind- I found myself crying all the time and I mean all the time. I had experienced this before when I lost a baby but this was far far worse as it came with the extreme tiredness and lack of focus and things that brought me satisfaction just did not feel the same.
There were times when I felt numb from crying and upset with myself for being ungrateful for being alive still when other people I had been on the ward with had died during the time of my recovery on the ward. I had listened to people being told about the probability of the success of their operation- what deficiencies they were likely to have when they woke up. When it came to my time, they wouldn’t talk about the outcome. This was a strange half hour as I signed the forms. I do a lot of planning and strategy with work and looking back I planned a lot for managing the operation and my recovery- it’s what I do. It suddenly occurred to me that I might not have really needed to have done all of that work as I as I knew myself and understood myself may not be there tomorrow. I may be transformed in a way that meant processing situations and outcomes may not be a thing I would be capable of any more. It was strange indeed as I hit a point of zen calm and thought I have done all I can do up to this point. I had been advised to set my affairs in order and had given lasting power of attorney to my brother and my partner and left notes for my godchildren and my other of my loved ones.
When I woke up 4 1/2- 5 hours later I couldn’t quite believe I was still here. I was transformed. But transformation takes so many different forms, which I have now learnt. Things have a different value, everything has a different light and is also kind of the same and it takes time to get used to it and mind the gaps!