AVM Survivors Network

Time expectations


I was wondering how long it took people with a ruptured Avm to return to work? OnDecember 6,2016 I suffered a terrible headache that I had on and off for about a week, and got sick while at work. I went out to lunch with a coworker and when we got back I told her I didn’t feel well and thought I was going to throw up. I went to the bathroom and once I was finished she asked how I was feeling. I told her I think I needed to go to the hospital because I had an awful headache and while I threw up I heard something pop in my head. She got me into a conference room and went to get HR. I then had a seizure and an ambulance arrived. Our office had just been moved to a new city and we were luckily only a few minutes from a hospital. The ER Doctor on call happened to be a neurosurgeon and within a few minutes knew what the problem was. I was put on life support and had a catheter put in to get the blood out of my scull. I stayed at that hospital for 2 weeks and then transferred up to NY Presbyterian to be closer to home and to have gamma knife treatment. I then was transferred to JFK’s brain trauma unit to start therapy. Today marks the one year mark of when I was discharged from the hospital and I cannot believe I’m still out of work and haven’t made more progress than I have. How long did it take others to get back to work? Any advice for someone suffering from anxiety of being out of work for so long? Was also hoping people could share their timelines of major accomplishments (returning to work, driving, feeling like themselves, etc.)


I had my AVM leak in November 1986 and went back to college in the following January. I still had many symptoms, double vision, balance problems, hand-eye coordination but was able to muddle through with the help of some great friends and patient professors. The following September '87, I was back to almost normal and ended up second in my class. I found putting everything I had into learning was very therapeutic.


Unfortunately after my AVM rupture I never made it back to work I’m currently on disability; socially people have a hard time telling the difference between my new self my old self but I cannot handle multitasking and my short-term memory is terrible and if I try to think too hard I get auras that my neurologist attributes to brain flooding… I guess mental overload so I cannot get released back to work, but everybody’s situation is different so never quit trying!


Hi :slight_smile: You look like me a year ago! How I understand you…So this is my story…Back in 2015 I was living a very stressfull period, the job I had and I loved (I was project manager of European Funds, the portuguese companies applied to money and I was in charge of giving it) wasn´t renewing the contracts with anyone and a collegue of my father age that I truly considered as a second father discovered and was fighting cancer. Resuming at the beggining of 2016 I had lost in two weeks my job and my friend. I was totally depressed crying every night (and getting such strong headaches) that a friend gave my resumee in her company wich I didn´t wanted because I knew I hated the type of job but I accepted because I didn´t wanted to stay at home crying all day also. So…I went and of course started to hate it …started to push myself very hard and 22 days after entered the new company I was at the gym and felt something exploding in my head and you can assume what happened. Today is my first day of unemployment because the company didn´t renew the contract and to be honest I feel free and relieved! Probably isn´t your case and you love your job, I still wouldn´t be good to return to work even if it was my previous job that I loved and the bleeding will make two years this month!
Sometimes I feel like crying because my right side hurts so much, I get tired easily too and so many other things…but I look back and I see the improvements…and that´s how you have to think also! It´s not my fault or anyone fault that we have a disease that is not easily cured, specially if we had gammaknife! It´s so many ups and downs and we don´t even know from where the symphtoms are coming…from the bleeding? from gammaknife? from our fear or imagination? Imagine that we lived in a perfect world full of jobs and we didn´t need to worry about that…would we be so worried in recovering on the schedule of a job demand or society convenience or would we be recovering at our natural time (that is unpredictable) and respecting our healing process? Honestly I miss much more travelling and having fun and energy and dreams and hope in the future than working! And thats where I´m going to concentrate this year since the last two were passed like you are right now, anxious, feeling worried and probably not helping your recovery with those emotions. And with all of this I just want to wish you calm and positive thinking and return to work will happen :slight_smile:


Hi Vregnatuk, I didn’t go back to work, until 4 and a half years later. And I went from a marketing manager to a part time receptionist. I get tired with just a part time position, and realized I cannot handle anything more. Grieved my old self for 4 years, then finally accepted it and now finally happy where I am. Simple, no stress and no worries. And leaves me time to learn more about me and discover what other abilities I may have.


2 posts were split to a new topic: Hi I’m Luza


Update I am thrilled to share that just over a year and a half after my rupture, I am finished with all therapies, able to drive again,and heading back to work in a week. When I was going through therapy, it seemed like the finish line was always moving further away, but now I am so close I can almost reach out and touch it! It’s emotional for me because I am finally in a place where I can reflect on everything that has happened and see all of the progress I have made and it’s ansokuteky crazy to think about! The road to get to this point has been the hardest journey I have ever encountered, but being right in front of the major finish line, I see the big picture. I am a better person today for having gone through all that I have. A piece of advice for anyone just starting their recovery, take some time to mourn your losses and then move on rom the self pity stage. Be patient with yourself and never give up! You are going to have days where you are totally exhausted and frustrated, but you have to get up and keep pushing forward, or else you won’t get any better. A quote I found particularly motivated over the passed year…” if you ever find yourself doubting how’ve far you can go, just remember how far you have come. Remember everything you have faced, all the battles you have won, and all the fears you have overcome. It wasn’t until this summer that I realized how far I had come. I took a public speaking course, and every speech revolves around my brain Avm and my recovery. I quickly saw that it was a miracle I was still alive, and I thought there had to be a reason all of this has happened. Just think, you were born with this condition, and it went unnoticed/ dormant for years. I look at all I have accomplished before my Avm ruptured and think, i was able to finish college, get my first job, pass all 4 of the CPA exams, so this condition is not meant to destroy me, I view it as a learning event. A week out from heading back to work, I am reflecting on all of the events I was able to be a part of because of what happened and think, it was all worth it, and moving forward I have new priorities. It wasn’t as clear to see when I was struggling through it, but looking back, there were so many little details that lined up when my Avm ruptured that I shouldn’t even be alive today… yet here I am, so I’m going to give everything post recovery my best shot and know that what ever is meant to be wil happen.


I agree. For those of us lucky to get through it pretty well, this experience can be life-changing in a positive kind of way. It’s great to read your post and understand how well you are doing. Well done! And keep going!

Very best wishes



Congratulations, thanks for inspiring!


Thankyou so much for your post!

I will be referring back to your post during tough times, it is so important to remember there is light at the end of the tunnel. Regardless of whether there is hope for improvement, we adapt and move forward to be happier in life if we hold on to believing we will.

You have no idea how much you have made me feel stronger during a tough time at the moment. Your post has made me tear up but in a happy way :heart:

Best wishes,