3 Years Post Craniotomy - No One Understands Me!

I have looked through these forums quite a bit, but have not posted much. I have become extremely frustrated because it seems as though no one understands what I am going through, so I am hoping I can find some support here.

I have suffered from debilitating migraines my whole life. In 2007 I had one that was so bad that I was rushed to the ER. They treated me like I was faking it (maybe just looking for pain meds), and left me laying in the room in pain for over an hour before they just gave me a pain shot and sent me home. I was obviously concerned, so I went in to see my PCP the next day. This led to a CT scan, then an MRI. When I got the call back, I was instantly concerned because they wanted me to see a neurologist right away, but would not tell me what was wrong.

When I finally arrived I got the news that changed my life forever. The neurologist told me that my migraine was actually a small bleed, and that I had a rare birth defect called an Arteriovenous Malformation (AVM), located in the left occipital lobe of my brain. In the coming months I went through a series of invasive tests, MRIs, fMRIS, and saw numerous specialists and surgeons. I became extremely depressed, and had to be prescribed Cymbalta and Klonopin just to maintain. I was also prescribed narcotic pain killers and anti-seizure medication. From someone who had never taken anything stronger than a Tylenol, I felt like I was a walking around like a zombie 90% of the time.

Along with my surgeon we decided to try embolization first to close up the AVM, hoping that it would stop the blood flow and die off. After two of these procedures it was still there. After these unsuccessful attempts I made the extremely hard decision to have a craniotomy done so that the AVM could be completely removed. My neurosurgeon was compassionate, but at the same time very realistic about the fact that there was a possibility that I wouldn’t make it out of the surgery. At 25 years old, with a husband and daughter at home, I went to the lengths of writing up a will, signing a DNR order, and making sure my life insurance was in order. Thankfully, after 9 hours of surgery, I was out of the operating room with my AVM obliterated. The recovery was hard, and extremely painful, but I was back to work in about 3 months and glad to say I was a survivor.

If only I knew that the surgery would be the easy part. The past three years of my life have been a complete disaster. I have been in serious legal trouble, battled with prescription drug dependence, been diagnosed with numerous mental illnesses, have serious financial problems, and in general just feel like a completely different person. I feel a lot of guilt because everyone around me feels like I should just be happy to be alive and that by now, I should be over it. I also feel like the psychiatrists and doctors that I have seen feel the same way, and just diagnose me and drug me up because they don’t really know anything about post-surgery mental illness. I’m not trying to use it as a “crutch” but I really think I have psychologically changed my surgery.

Looking back on the past three years, I have completely lost the ability to understand the consequences of my actions, am extremely spontaneous, and have emotionally distanced myself from everyone. I don’t have any motivation or drive to do anything, even daily tasks like laundry and cooking.

The past week for some reason has been absolute hell. I am facing the reality of having to file bankruptcy (medical bills turned into collections), my husband is ready to divorce me, I haven’t eaten or slept in four days, and I cannot find anyone to listen to me. To top it off I started Suboxone treatment for my pain pill addiction, which has been one of the hardest things that I have ever done. I suppose I am just lost and am hoping someone can help that has been in a similar situation. I feel a lot of guilt for how my life has turned out, and want to turn it around but I feel like no one here can help me.


It sounds like you really have your hands full in all of this, and with the effects of surgery complicating your reasoning, no wonder it's tough for you to make sense of all of it.

The only thing I might suggest is to try to tackle one thing at a time, and it sounds like you are targeting the pain pill addiction. That's probably a great place to start.

It likely won't work for everyone, but our whole family (wife and two younger kids), all suffered from emotional issues and depression through all of Chari's AVM. We found an excellent counselor, who worked with all of us together and individually to help us get back on track. It really helped us sort through things and made our family stronger.

I would encourage you and your husband to try that. With outside help, you might be able to get things back in track, maybe not like before, but at least to a reasonable level.

Best wishes,

Ron, KS

SF, of course you're not alone. Anytime doctors are tweaking with a person's brain, there are some common side effects: Impulsitivity, more prone to addictions, difficult decision-making, etc. My daughter has had two craniotomies and possibly another one coming this summer. She gets easily overwhelmed by a lot coming at her at once. When she breaks it down into smaller pieces, she does very well.

Ron said it well. Sounds like you're doing the right thing by taking it one piece at a time. Tackling the addiction sounds like a great place to start. Bankruptcy sounds frustrating and emotionally painful, but those are just things and can be replaced.

Maybe you can give yourself a daily list of things to do. You could start slowly and build on it. Then you know what has to be done and you can enjoy crossing off those things as you complete them. My daughter does much better when we spell out what is going to happen and what we expect of her. We talk to her about whether she can handle it. Some days, she can't and we adapt. Some days, she understands the expectations and we can proceed.

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. For me, that's been the most difficult part.

I wish you well. Keep in touch!

My situation is not much better, but I won't go through all the sodid details, I have however, 1 small suggestion that had a marvelous positve effect post-crainiotomy: One of my many drs Or therapists suggested:Metro nome therapy. (yes the clicking device that piano players use to train-- or my 16 year old son downloaded meternome beats from a website to my MP3) It is a great! non-medicated way I have found to silence the inner demons post AVM discovery) Apparently the meternome somehow helps coordinate brain signalsOr in my case helps make sense of all the chatter while bringing peace and focus back to my world

Good luck

Nicole in Pennsylvania


I havent had a craniotomy (yet anyways), but I wanted to lend my support to you. It sounds like you have a lot going on and you have my sympathies for everything you have gone through. Right now, I think you have to take it one day at a time- and one issue at a time as well. You have been through so much it is unrealistic for people to have the expectation for you to "be over it." You had major brain surgery. This does effect cognition, decision making, emotions, etc. And that is not even mentioning all the medications that can effect us. I think starting with the pain pill addiction is a good start for you and you should feel proud that you are taking the first step.

Remember, this was all precipitated by something completely out of your control.

Is it possible to find a trusted counselor who can work through some of these things? NOt just a psychiatrist who will prescribe medications, but someone who will work with you and you and your husband too.

I hope you find support here- I know a lot of people have had similar experiences and been through some difficult times. PLease remember you are not alone- we are all here to support each other.


SF, Both Ron and Tina have given you great advise. I had a craniotomy on the left temporal lobe. It is difficult for people to understand that we are not the same as before. Hang in there, so many people on this Network understand what you are going through…Keep on trying and let us know how you are doing.

SF, Sorry for your troubles. I find since having my surgery that I cannot focus on much of anything for very long, easily distracted and I am a different person than I was before. If you can find a counselor to work with, it is very helpful. They are someone who will listen to you. The people around me are understanding but do not really understand. I hope that you can find the peace that you deserve. And as Patti stated this was all precipitated by something completely out of your control.

SF, I am so sorry that you have had to go thru all of this. It sounds like from the start you didn't have people who really listened to you or took your concerns seriously. I can't imagine going thru all of that without good support. In my opinion, people seem to struggle when they aren't truly "heard" or allowed to grieve for their lost lives. You have to somehow get used go this 'new you' and no one helped you do that and it sounds like no one is helping you now. In the future I think there will be FAR more help for post brain surgery and brain injury patients- right now it feels like there is definitely not enough.

Is there a support group in your area of brain injury? I know in Canada we have lots of these organizations and maybe someone there could guide you a bit to find the help you need or at least you can talk to others in a support group who understand how you are feeling.

Is it possible for you to be admitted to a rehab facility so you can concentrate on just feeling better and get some counselling too?

I hope that someone is able to help you even in some small way. My thoughts are with you.

SF, What i feel like is the following, we should be happy to be alive and should be over it but only we(i don’t think all of us the avmsurvivors but some of us, maybe the majority maybe the minority i don’t really know) know that this is kinda difficult.I feel more or less the same with you, meaning that most of the times i think (and i think i know) that none understands me and will never do.Because none carries a graft in his head a fake thing to replace the missing bone no one is touching the scars in his head no one is feeling the pits in his head.What my neurologist told me the other day is that in the recovery period that any avmsurvivor is in (and this period is quite long) everyone needs to contribute and it’s not only up to the patient.That’s the point i think most of the people surrounding us is missing

HI SF. Perhaps you need a good Neuro-Psychologist...one that specialized in Brain Injury could help. Psychiatrists tend to over medicate people. This is a quote from my sister-in-law who happens to be one! As far as financial woes...


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I will be PRAYING for you!!!!

I have to say, I was absolutely floored when I read through everyone’s responses. It is almost like this huge weight on my shoulders has been lifted knowing that there are people out there who know what I am going through. I’m sorry it took so long to respond but I get extremely emotional when I read through these each time - I have felt so alone and so unsupported until now, and I really thank you all from the bottom of my heart.

So, since I last posted I have taken some of your suggestions and made some big changes. For one, I am completely off the suboxone and can happily say that I am clean after three years. And let me tell ya, I have never felt better both physically and mentally. I have so much more energy and have spent most of my time doing fun stuff with my daughter. I have started making myself “To-Do” lists for each day, and also have some for more long-term goals. I have also started journaling, which I actually find extremely therapeutic. After reaching out for help, I also found a local neuropsychologist who will hopefully be able to help keep me heading in the right direction.

Things definitely aren’t perfect by any means - I still feel extremely unsupported by my husband, still have issues with anxiety and depression, and am still in the same horrible financial situation I was in before. But, like a lot of you said, I am taking baby steps - focusing on one thing at a time and following through until its done. Even if I have to force myself sometimes, I know I have to do whatever it takes to get back on my feet.

Thank you all so much again - it is really amazing to me how kind-hearted and understanding you all are. I will be sure to keep you all posted as time goes on. If anyone reads this and is in a similar situation please feel free to contact me - I think an important and necessary part of the healing process for me is to share my story and hopefully offer support and hope to others in a similar situation.