My experience and lifestyle, but what about yours?

Hello, I’m Armando from Texas. This is the first time I post a discussion or even share my experience with others. I feel comfortable sharing it here because people have experienced the same situation or relate to it. I would like to share my experience and lifestyle and obtain a respond from you guys. Currently I’m 24years old. It’s been about 6 six years since I had the head surgery. I’m walking alive, married,have 5 year old son and expecting another baby late October. I feel normal, like if nothing happened. However, I bare a massive scar behind my head and suffered vision loss on my left eye. I’ve been trying to forget my experience, but it’s difficult to ignore when you have a scar to remind you and vision loss in one eye. I was living a perfect live my senior year in high school. I was an athlete since I can remember. I played baseball, track, football, went fishing, swimming, had a girlfriend that later became my wife. Everything was perfect for me. I was in good health condition. I went to monthly and yearly doctor visits and nothing ever came up. I was very health until my senior year , I collapsed in my bedroom. The only thing I remember is seeing cops on my room and paramedics questioning if I had consumed any drugs. Perhaps I looked too bad that they thought I was under the influence of narcotics. However, I was taken to the hospital, completed some tests and a discovered a bursted vein inside my head. A month later I was taken to the hospital of San Antonio to perform the surgery. I was released a month later. I was walking, talking, normal as before, but with a huge scar on my head and poor vision on my left eye. After this, I have never had complication of any kind. I was depressed for these years or perhaps still depressed. I went back to college and to test myself and know if I had any issues. But luckily, I obtained 4.00 GPA 3 semesters in a role. Felt good, and got a job to provide for my future wife and child. But that’s where the big problem started. Who was gonna hire a guy with a huge scar on his head and vision problems? I went through a lot of job interviews and none seem to give me a chance. Therefore, The caps became part of my daily tasks. I wear caps everywhere. I feel secure and confident with my cap. I been able to obtain good jobs and perform a normal lifestyle. I go out to the movies, fishing, cook outs, exercise and many more. But I’m limited to what I can to because of my vision. Playing sports is no longer a part of my life goals, especially baseball. So far life has been good, but I still believe I’m still depressed regardless of myself tell me I’m not. My goal right now is to be a successful business man, but still my scars hold me back from performing at my fullest. What are your lifestyle after the surgery? What jobs do you guys do? What goes on in your life after the surgery? What prevents you guys from reaching your goals? And what are you guys doing to achieve your goals? Thank you! Any responds will be greatly appreciated!

Armando, Many of us suffer from depression due to our AVM. Please speak to your doctor about it..You can get help.

Before my hemorrhage, I loved scuba diving and traveled all the time. Due to me having damage to the language area in my brain, I have aphasia and am on disability. I also have vision loss, seizures and short term memory loss...BUT, I feel I live a good life, nevertheless.

Please stay strong & positive and always know that we are here to support you. You are not alone!

Armando- Thanks for sharing your story. It sounds like you have a lot of determination to move forward and you are setting some goals for yourself. That is great. After my brain bleed, I really needed help to be able to move forward. I really recommend seeing a therapist. I worked with a therapist a lot who helped me get my confidence to go back to work. I work as a registered nurse. I did have to find a new job though because my old job was too stressful and gave me headaches. I work in an outpatient clinic now and I love my job. I can't write very well anymore, but no one in the medical community has good handwriting so I fit in lol. I don't think as fast anymore, but I can still be nurse, I just needed to be a nurse in a different setting. The goals I had before my brain bleed are very different than they are now. I just had to learn to love the new me, deficits and all. Remember, scars are not proof of weakness, but proof of incredible strength and courage. Best wishes to you.

Armando, my son is also 24 years now. One and half year ago , he had an AVM rupture which left him paralyzed on the right side, not able to talk,read,write and walk.He just graduated from college and had a good job when the tragedy stroke him. He lost everything, his job, his girl friend. He also has to relearn everything.sometimes we wonder if life is fair.We try to remind ourselves everyday to think positive and count our blessings. There are so many people out there who are much worse off than we are. You are blessed to have a beautiful family and a job. Stay positive can go a long way.I like to visit this website.I feel connected with the people here because we share the experience and pain and get comfort from each other .I hope you can do the same.

I waited many years after surgery before talking to a psychologist about surgery, depression, limitations, etc. it is helping me, but I wish I had gone for help earlier.

Hi Armando.....what you are going through as AVM survivor is very normal with regards to frustration, employers being judgemental, limitations in performing tasks etc.

Please do the following:
1. Your primary goal looks to be to find the "suitable job" which matches the skills sets of the "NEW YOU". so please express to your doctor about this and request him to perform a COGNITIVE ASSESSMENT of your abilities. The report will give a fair idea of what YOUR REALISTIC abilities are. Based on this you can start getting feedback on what kind of job you can try to explore given all the practical constraints in finding such a job.
2. Our society and the people we socilaise with plays a huge role in making us content / restless about ourselves. Hence try to identify one or two people in these groups whom you think "really cares for you" and express your situation and limitations. After this using them you can find ways to create a small message about yourself in a relaxed jovial format focusing on your triumph of life inspite of your limitations and make sure the message spreads on social media or friends chat networks. Once people get to know the real you the chances of you being judged and pressurised will reduce.

Please give it a try.

Bangalore, India.

Well, my AVMs began impacting my life when I was 19 years of age and I am now 53 and they are still impacting my life. But that is all, they are impacting it, but not keeping me from life. I have had to change my goals to fit my AVMs, but that has not been bad. In my 20s, I wanted to run any length of foot race, but I was not able. I wanted to climb all of the 14 thousand foot peaks in Colorado, I have not and will not be able to do that. I limp and hobble, for many years I have walked with a cane off and on. That being the case I changed my goals. I can swim further than most people. I have two successful swims across the Catalina Channel off the California coast. The distance is just short of 21 miles. I have had many very decent jobs in the corporate world. I have had a successful marriage for many years. My sons are grown and going to college. I have traveled both domestically and internationally. I feel very blessed. The AVMs have kept me from doing some things in my life I wish I could have, but they have not controlled my life. Yes, you have scars from you AVMs, tell a good story about it. Most people have never heard about AVMs and most will listen with interest.

I hope when you can look back and count your blessing such as your wife and child and child to be, plus being able to work that will be a good start. Change your goals to fit your life try not to define you self with goals that define you.