I assume for people hit harder physically by AVM it wasn't a difficult decision to apply for disability. In what I have read it was not that easy for most to get approved but people do. I was hit with a grand seizure initially but did well for a while and 6 months in thought I would be almost recovered. However the opposite is true. This is taking a huge toll on my body recently and I am realizing I will not be back to normal as soon as I planned. Disability is suddenly seeming like a smart idea to keep my family going until this is over.

My question for discussion is: If you are on disability, when did you decide it was necessary and what was your personal experience with the process?

Hi Holly. I am on Social Security Disability. After my bleed, rehab, etc. I did actually attempt to go back to work. I quickly realized that it was far more difficult than i ever thought it would be. I applied for SSDI about a month after I left my job. I was denied twice. I hired a lawyer and appealed. Social Security sent me to a couple different doctors who checked me out both mentally and physically. It was really a joke, these doctors didn't know a thing about a brain injury. Physically I was a bit weak but not bad, besides the fact that I am now half blind. Mentally I was still a mess. Memory was terrible, anxiety issues, visual spatial problems...I was awaiting a hearing before a judge (the last chance for approval) when I got a phone call from my lawyer. It seems that there was such a back log of SSD cases that some cases were sent to special lawyers throughout the country who were given the authority to approve cases on the spot. Mine was one of those cases. I was approved by some lawyer I'd never even met on the opposite side of the country. At the time of my bleed I was the primary support for my family, my husband having lost his job in the building industry. Health insurance was also through my employment. Had I not been approved for SSDI, I'm pretty sure we'd have lost the house and be living who knows where? I was told that usually every claim in initially denied by SS. They want to make it as difficult as possible because they don't want to pay you your own money! They expect a lot of people to give up and not even appeal. Hiring a lawyer who specializes in SSDI cases is free. They only get money if you win your benefits. There is also a cap on how much they can get, I think it is maybe $5K? (I honestly don't remember). If you are awarded benefits, it is backdated to the date of your injury, which for me was easy to figure, it was the date of my bleed. The lawyers fee is deducted from that and then you get a lump sum check. Then you start receiving monthly benefits. I had to go back to SS and apply for money for my children (you qualify if you're on SSDI and you have children) That took a few months also, but that is also backdated, so no big deal. Now, supposedly at some point SS will notify me that it's time to reassess my disability to see if I still qualify. I don't know when that will be but since nothing has improved in my condition I don't worry about it. So, to make a long story even longer...It's a huge pain in the bottom! Lots of bureaucratic red tape and waiting, and more waiting but worth it. I worked from the age of 15 until the day of my bleed. I paid into SS all of those years. I deserved to get the benefits, it's my money! Good luck and if I can answer any other quesitons, please let me know.

Wow. Thank you Trish. Lots of good info and validation. I had thought I'd be better in 6 months and back to work. I laughed when someone initially suggested it. I drove for a living which obviously is not possible anymore I am only aloud to drive my vehicle as of next week but not a large passenger vehicle. I have been looking for other jobs but like you I am weak so anything physical is not reasonable and considering I could have seizures I have to think of safety. My eyes are being checked soon but I am having issues there also. I am going to apply but I am nervous. I may bug you for more info as I go along. You are great for taking the time to answer my question in depth! LOSL


Holly, check with a lawyer first! They do all of the work for you if they agree to take your case. I didn't do that and I wish I would have.

Thank you. I will. I have a friend that just went through the process, for something different, and she gave me her lawyer info. I will call and at least see what she says. :)

I applied for disability about 1.5 years after my bleed/craniotomy. I got accepted right away with no troubles, and I've been on it for 3 years now.

That's great Chris! Sounds promising. I was worried that they would question why I hadn't right away but I had some retirement money and a couple resources that are fast running out. I needed to hear others were able to.

Holly, When I first had my brain bleed and craniotomy, during my check up, Dr. Ogilvy told me that I would not be able to be a Human Resource Manager again and that I should apply for Disability. So my sister took me to the Social Security office and helped me to apply. Perhaps because of my brain damage, I was accepted the first time. There are others who have to hire a lawyer to help them get accepted. Did I want to go on disability, did I want to lose my job...NO absolutely not! But I had no choise. I truly don't know why I was accepted the first time, but I think it's because my neurosurgen (Dr. O) and my Primary Care doc explained to Disability that I truly was disabiled. I wonder if you should get a lawyer to start your case. Wish you the best!

Thank you Louisa. I appreciate you sharing, and knowing you like me were hesitant. Originally a pride issue, I now realize my pride will have no value once my current resource officially run out. I am going to start the process Monday by calling and/or applying. :)

Hi Holly - I was in a coma, and the decision was made for me to be on SS-D and thankfully a friend of the family had contact with the SS-D people (this usually takes time and frustration I'm told); I think that it was financially medically necessary - I would think, anyway. Julie

Julie, I am glad that all worked out for you. Sorry that you were in a coma. I guess that's my hang up. That I have read so many other stories of people that have had it so much worse. I have a couple good days a week (most weeks) and haven't been in a coma or worse. But I am riddeled with migraine and other peculiar symptoms that make things difficult. I drove a school bus so I obviously can't do that anymore. I'm trying to accept it as a necessity until I am free of this. I thank you for sharing Julie and hope you are doing well.


That's a long time. What did you do for the two years in between? That is what I am afraid of.

I am sorry about your dad Ninibeth. I am happy you had good support to help you through. I appreciate you sharing! I am going to make some calls tomorrow and see if it is worthwhile.

Hey Holly, I was approved in May about a year or so after I applied. I have issues with my left leg but the main reason I was approved was due to my migrains. So if you have any problem with headaches make sure you discuss them with your doctors and make sure that they document any problems that you're having. I did hire a lawyer but they don't get paid unless you win so it's well worth it. Good luck Holly.

My rupture was 2 years ago. I applied for Disability 1 year after the stroke. And I am indeed physically handicapped and visually handicapped from the stroke. I WAS DENIED ON THE 1st application! On Wedneday I Finally have Another interview 2 Years later! I have not received a penny of disability in the 2 1\2 years since my bleed! This has been devastating all the way around!! We lost our home in Forclosure, and my husband is filing to divorce me!! I would suggest you file as soon as possible, it is a long and tedious process!!

Also when they figure back pay they determine the day you became disabled and start the back pay six months after that.

Wow Nicole. I don't have words to express justly the loss you have experienced. If I knew what I knew now I would have started the process the day this struck. I hope things turn around for you soon. Have you spoken to a lawyer yet?

THanks Jason. I spoke with a laywer this morning they won't really talk to me until I apply and get denied. I am intimidated by the process and never thought it would be necessary but I am going to get the ball rolling today. Thank you for you response and hope things are going well for you!

As i was very young when i had my first 2 bleeds, i was determend to get too work - and i have. I knew i would be utterlyt useless to be on the phone every other minute, or have to keep talking to clients, etc - there would have been no chance for me. So i went for the role of a designer. By this, generally i dont have to chat too people that much, in fact not that much at all. And if i do, its people face to face, and emails is fine.

You have to look at the limit of what u can do after your bleed, and focus on something that u can do.

I have Rich. All my licensing and certifications are now useless so I am literally at the beginning. I might as well be fresh out of high school again accept I have a child to support to a minimum wage job is not going to support us. Transportation is an issue as well. I was told to go on disability in the beginning but refused. I also thought I would be back to my old job for the New Year and only now know it could be years if ever. I am really between a rock and a hard place. At least if I can secure some income I can get back to my classes and have something to work toward but worrying so much about the basics right now is not only damaging my body but making it hard to look into the future. If I am able to get the disability a huge burden will be lifted allowing for more energy to be put into doing what you have done, assessing what I can do and going on. Thank you for sharing. I have read your other insightful posts. You are very inspiring.