AVM Survivors Network

Social Security Disability Review


Trish, I have heard that SSA is required to review cases, however, I have NEVER been brought in for a review. Isn't that odd? It just makes me kind of curious as to "why" I was never reviewed...? Do you think it might be because I had an extensive neuropsychological evaluation done when I was initially denied coverage? Or, do you think it's because of my current age (55)?


I just read this article: http://www.disabilitysecrets.com/is-my-case-reviewed-to-keep-getting-benefits.html

For me, my feeling is that I have either been "lucky" in not having my case reviewed, or, perhaps it's because I had an extensive neuropsychological examination done in 2003 and the results of that examination were concrete enough to show that improvement in my condition is unlikely. I was personally told by my brain surgeon that I should not expect much improvement beyond two years following my surgery (my surgery was January, 2003). Personally, I HAVE seen improvement in my condition since then, however, I know that I still have many cognitive issues...


I had the extensive neuro-psych testing too. A few months after my bleed. At the time I think the neuro-psychiatrist felt that I would make significant improvement. Compared to where I was a few months past my bleed, I'm leaps and bounds but now after 6 years I'm pretty sure I'm as good as I'm going to get. Still capable of living a full life with my family but not so sure I could ever rejoin the workforce. My defecits are just not going to improve.


So, Trish.... "Why" do you think my case hasn't been reviewed in 11 years? Or, is a "review" simply their sending some paperwork for us to fill out about my case? I "think" my husband did THAT for me, several years ago. I just thought that the review involved going into the SSI office? We've NEVER had to do that...


I don't have to go to the SS office. It's just a packet of paperwork to fill out. That's probably what your husband did for you. I actually might prefer going to the office. I just feel like I could tell them exactly what living with a brain injury is like or something. You know, it's hard to put that on paper just checking the boxes they want you to.


Hmm, I don't know. I'm not sure... I'll have to look back at the paperwork that he sent and see what it said.


We Apply 2 years ago my son suffering from AVM and cronic DVT both legs was denied is hard to got a job with crushing pain now what


Get a lawyer, Alicia...Please don't give up trying to get SSDI.


Hey Michele with one, I have also considered getting a part time job, but worried about what that would do with my benefits as well. I also have short time memory, can’t do more than one thing at a time, and excruciating headaches at any time out of the blue with no warning whatsoever. Also I don’t know of any body who would hire someone that some days, not many thankfully, I can’t even get out of bed. I have never been reviewed and mine happened when I was approved 9 years ago when I was 41. I was determined to be permanently disabled, not sure if that means anything or not. I know some people on disability that work part time,but I have no idea what $ is acceptable and what is not. I did help coach a local high school baseball team and they pay $500.00 a year for that, but I turned it down because I was afraid they would take my benefits. Of course my part on the ball team was just to observe the players and keep book and basic discipline since I am unable to run or throw much since I require crutches to walk. Sometimes I can get by on one, but it wears me out a lot faster. But I am also interested on what is and what is not acceptable as part time work and how much you are able to receive, because even though I hate being on disability, it is a necessity to pay bills.


Hire a lawyer, you don’t have to pay them anything up front. At least that is the way they do it here in NC. They get paid when and if you recurve disability and it comes directly from your account that you receive. That’s how it worked for me,not sure that is how it works everywhere else.


I had to run the whole gamut of their Doctors before I ever got qualified, but have never had to go back, or get reviewed since.


If/When I finally get a straight answer on this from someone, I will let you know! :)



Good luck, but do not think it is going to be easy! Here is a little bit of my story:

After my brain surgeries w/ strokes, in 1990, I got disability benefits for only about 6 or 7 years. I could not go back to my fabulous career, because of my memory problems and other things. SO, to this day, I wonder WHY did they take my disability benefits away if I could not go back to my old career position?


Lisa A. Stuckel


Hi all. I'm very interested in this discussion because I was diagnosed at the age of 24. I'd had a good strong work history since the age of 18. When I initially applied, I'd been sent to some quack doctor after the admins refusal to use my med records from my neurosurgeon. I knew at the hearing that the judge usually excuses the plaintiff and the attorney and then a response comes in the mail. At my hearing, the judge apologized to me for the fact that I'd been flagged in the system as being a liar and falsifying my symptoms and condition. I've had four bleeds, SRS treatments and a partial embolization. I have absence seizures and cannot live alone. I've forgotten about appliances and left them running. I don't drive and the list goes on and on. It's scary to think or imagine that I'd have to go through this all over again especially since the pain I experience is constant (head, neck and back) and there's risk for further bleeds. I want to keep following this post and thanks to all for their responses and input so that others on here can have something to refer to.


I just got my update review in the mail yesterday. I remember the judge told me I would be reviewed every three years when he awarded me my disability but, its still nerve wracking. Mine is a single page - front and back. The work question has me baffled - I babysit once a week (or more) for a friend of mine so I can qualify for the MAWD program but, it's not actual work and I'm not certain how I should answer that (?).

You would think if they are going to do a review, they would send the questionnaire to the dr.... Just my thought on it, that's all. :)



Hi Alicia. I know I'm a bit late but I was reading through this newsfeed and wanted to extend an additional suggestion. Prior to me getting approved with an attorney, I asked for the help of a rep at my congressional office. You can check online and based on your state and what district you're located in they'll provide you with that information. Write or call that office and let them know what's going on. You'll have to sign disclosure documents and let them into your SSDI files but they'll contact SS on your behalf if they accept the case and communicate for you. It's still up to you to keep track of your records and any correspondence that comes to you, but it'll also go to their office. It'll give your case more push when SS sees that your congressional office has taken an interest in it.
In my case (because of my age and apparently I didn't "look sick" even after 4 bleeds in about 3 years) I was still denied and had to get an attorney but my congressional office did help me get my hearing expedited and instead of waiting 2 years for a hearing (in addition to the 2 I'd already been waiting) my case was taken before the judge in about 4 months. I hope this helps and gives hope to another option. Best to you.


I know it's been a few months since this has been posted. But, I want to add - I just got my 13 page review in the mail this week. After having a few nerve racking days of filling it out. I talked to a dear friend of mine who is on disability too and is need of a lung transplant. And believe it or not - she gets these reviews too.

I thought when I got the two page one in June, that was it. After reading up more on these reviews. I "think" since I answered the one question about my condition that it 'got worst'. That made them send me the long form -- I'm guessing.


Ben, thank you for posting this helpful reply based on your experience.




Hello Trish,
I finally got SS. I had a wife that helped me. We did it on line and sent in every paper (copied) of doctor papers, notes, reading....and anything else. It is no fun but it is how it is worked. I hope that you can have helped. Maybe you are better than me anyway?
Best wishes....Rod