AVM Survivors Network

Social Security Disability Review


For anyone currently receiving SSDI, have you ever had your benefits reviewed by the Social Security Administration?

I just received paperwork from SSA that my benefits are being reviewd. I'm a little (a lot) worried about this because I know how hard it was for me to get my benefits in the first place. Over 2 years of filing and appeals with a lawyer before I finally was approved

SSA likes to see frequent trips to a doctor. I haven't seen my neurologisit in 2 years. He released me because, as he put it, there is nothing more he can do for me. He cannot fix my brain damage. He cannot make me better. No point collecting co-pays and wasting mine and his time. There is no improvement in my condition but how much proof are they going to accept?

If you've ever had your benefits reviewed what did you do? Do I just fill out the form and hope for the best? Do I contact the lawyer who helped me initially win my benefits? Will he charge me this time?

Any insight anyone might have is very much apapreciated. Thanks!


I just had my second review in 4 years. They only asked me if anything has changed such as my home address, If I started working,Which I have and I forgot to tell them but as long as I show them my paystubs before the month ends it should be ok and of course If I make too much money the ssi would be taken away. I rarely see my physician let alone my neurologist,after my surgery I only saw my neurologist once since my avm in 2010 They never asked me about my condition since they already know. In the letter they send you it should tell you what to bring. It is simple.


I wish I could be of help, but unfortunately not. I did receive a letter once and I showed it to my primary care doctor and that was the last I heard of it. I have been receiving disability now for 9 years and that was the first letter I got, and that has been a couple years ago. I wish I could get off disability. I do not like it, I have always worked for what I got, but when my AVM ruptured that all came to a screeching halt, but the bills didn’t, so I had to apply because I knew at that time I was not going to be able to go back to work for a while. I still can’t and it drives me crazy, but I hope and pray that one day I will be able to get there. Good Luck and hope everything goes well for you.


Thanks for the info. I don't need to go in. I just need to fill out a form and send it back in. Basically, what I do day to day, what are my limitations, can I feed myself, can I dress myself..I know it seems standard but I am terrified they're going to say I'm not disabled anymore. You know, since I look perfectly fine and all.


I go through it every couple of years. They want to know your household income to see if they can adjust your benefits based on such. Whether you work or not and if your basic information has changed.

Its really just to see if they can take a few dollars here or there from you if you ask me.

My mother’s income shouldn’t effect mine as we pay separate bills but live in the same house. Still, they want proof of income(s) to see if your benefits should be adjusted accordingly.

Just fill out the form as you did initially with any basic info changes and send it in.you should be fine unless you got married or have additional income.


Just completed my first in two years since receiving SSDI. I try to see my neurologist, my endocrinologist & my neuro ophthalmologist one a year to keep SSDI and my Dr’s content along with my medical coverage. Yes, it’s annoying but a necessary tool. I to have very similar medical conditions.
Best wishes & take care Trish


Don’t you hate that? When people ask you what you do and you say I’m on disability and they look at you like, for what? I don’t see anything wrong with you. I want to tell them, come walk a day in my shoes, if you can bend over and put them on, and then stand up without feeling like your going to throw up all over the place because of the pain meds you just took to make your headache bearable enough to get out of bed. Then don’t wince when your head feels like it’s going to explode or feels like there is a little Tasmanian devil ( the loony toon type) wrapped up in barbed wire and is just running rampant in your skull. And you never know when it’s going to happen or how long it’s going to last. Let me give you a hint, 30 seconds feels like 3 hours. And don’t complain when you go to lay down to sleep at night and it sounds like a freight train and a jet plane is playing a game of tug of war in your ears. then you go to your yearly exam and the neurologist says that the dose of radiation we gave you to shrink and kill this thing,10 years ago, still hasn’t worked, oh and by the way, the blood is starting to run through that spot in your brain agin, but there’s not much we can do now but wait and see. See ya next year! Then go home and try to sleep thinking, wait a minute this thing ruptured, somewhere along the line, a vein is not connected, where is the blood going to go? And you have to go to bed at night wondering if you’re going to wake up, and then wake up wondering, is this the day that I bleed to death. Now, ask me again, what I do. Then you see the people get out of the fancy car with the placard that they got for their grandmother and all 4 people get out a skip into the store, taking the handicapped spot from the 90 year old woman walking with a walker. Yes I have a placard, but I only use it when there are plenty spaces there. I have to walk with crutches, not by choice I promise you and it gets very tiring to walk with these things, and you get in the store to see some kids take off with the little scooter or two overweight people who say, I’m gonna use this cause my feet are tired, and the poor 90 year old woman is left with her little walker trying to push the cart. And no, it does not bother me at all to tell them, HEY, she needs that, your are just to damned lazy, get off!!! I may not be popular, but I try to do what is right, and treat people with respect, when and IF they deserve it. Sorry for my rant on your reply, but sometimes it starts and I can’t stop.


I went through this a few years ago. It was a huge pain in the ass!!! I'm young part of the problem (31) so at the time I was in my late twenties. I filled out the paperwork and sent in everything I had and wrote everything that was going on etc. I didn't hire a lawyer until I found out they were definitely taking me in front of people to review my case. Luckily I won and the lawyer was will worth the $. I paid him up front only to than find out social security tells them what they can charge us. it was a battle getting the majority of my $ back. But honestly it was worth it to win my case lol. Now that was like 3 yrs ago I just received a letter again stating I was up for review I FREAKED but because I just had 3 surgeries they left me alone at this time. So you might end up in front of a little hearing to explain why you need to be on SSDI. But I would get a letter from your dr backing up your reasons and any other proof he has that will help you. I pray you get great results and I think its a shame that we have to go through this. Even though we look ok we are far from functioning ok etc. If you need more info of what I exactly went through inbox me on here. I'll gladly tell you anything :) Andrea


I don’t like having to have it either. I’ve worked since I was 15 and I liked working. Plus I’m pretty sure I could earn more than SSDI is paying me! A necessary evil, I’m afraid. Thanks for the info


Hi Trish, Please keep us posted as you go through this review process. Unlike many and even after I had been warned, I was easily and quickly approved for SSDI. I guess I looked very damaged based on the doctor's answers. Thanks.


I've had my benefits reviewed didn't have problems but then again never had any so I don't really know. Best luck, Amy


I've had them and I know people who have had them and it seems it's just a routine thing they do.
Sorry I couldn't be more specific or helpful but based on my own experience and from what I've seen I don't think it's cause for any alarm.If your doctors are all on the same page (with you) it'll just be a formality.


Well, I think at this point calling in a lawyer would be jumping the gun. I’d just fill out the paperwork because usually they’ll just process it right through if nothing has changed. If there are minor changes usually they will call, and tell you what if anything they need, are wanting in the way of proof to substantiate your claim. Sometimes you’ll get a sense for where things are heading during that call. Anyhow after they have all the info they need they’ll make a determination. Most of the time there will be some delay and then you’ll get a letter. If they decide you’re no longer disabled they’ll tell you. If that’s proves to be the case then you can appeal the decision. At that point I might speak with an attorney.


I just noticed this topic. This is a very interesting topic to me because I am considering trying to get a part-time job for the first time since my bleed/surgery. I had my bleed/surgery back in 2003 and have been unable to work since then. My main issues are short-term memory, multitasking and high-level executive function. I had my bleed/surgery back when I was 43 years old. I am now 55. I have always thought that I would not be eligible to work part-time since I am receiving my SSI. However, recently, I read some articles online that have given me the impression that I CAN work and ALSO receive my SSI as long as the income I earn is not above a certain amount. I'm not sure what that amount is though...?

I have also been paranoid that if I DO get a part-time job, will it put my benefits at risk? I absolutely cannot afford to be without my SSI benefits/income and I KNOW that I need them because I am aware of the issues that I STILL HAVE, as I mentioned above... Also, in all the years that I have been receiving SSI, I have never been contacted by SSI (to review my benefits). I don't know if that is because I had a comprehensive neuropsychological examination done after my 1st attempt to receive SSI was denied...? I provided the results of that neuropsychological examination when I was contesting SSI's denial. (I also obtained an SSI Lawyer who basically just resubmitted my paperwork and application)...

Anyway, does anyone know if WORKING part-time WILL initiate having them review my case? I know that there might be some legal professionals that are members of this website... I would truly appreciate any feedback they may be able to provide on this topic as well :)


I am very interested on how the process goes for you. Again, unlike the majority of folks, I was lucly and was approved the first time around. I think part of it was my age (56) and we had moved from NC to VA during the applicaation review. The dissbiility determination in VA sent me to see a doctor of their choice. I guess I looked the part well enough that they coded me as not improving enough to be a working member of socieety. They set me up for a review in 5-7 years, which puts me close to the minimum retirement anyway. I do agree with TTJohnson320, looks do not tell the whole story sometimes. After I was first approved, I didn’t dare to walk outside and try to be somewhat normal for fear someone was watching and would turn me in. My wife convinced me not to worry. She said just have them spend 10 minutes with you and see how you function, don’t worry. Sorry I cannot be much help overall but will be watching the discussion.


I don't know what to think as to "why" I wasn't ever set up for a review...? I thought it was because my disability is a "brain injury", but it sounds like others on this website HAVE BEEN called in for review and I'm assuming that their cause for disability is similar to my own (brain injury due to AVM Bleed/Surgery)? Does ANYONE have any further information about "why" this might be the case? My disability isn't "obvious" either... To meet me, I appear perfectly "normal"... my deficits are my high level executive function, multitasking, etc... I sure wish I had a an explanation as to "why" I haven't been reviewed. It makes me nervous sometimes. :(

If anyone has any further information, I will be extremely grateful :)


I had mine reviewed a few years ago, prior to my bleed. Filled out the forms and sent them back. I think it's standard procedure.


Rant all you want. That's kinda what this group is all about sometimes. We all need to vent every once in a while.


Thanks Rhonda. That was very helpful.


Michele, SSA is required by law to review cases. The length of time between reviews varies. It could be every 2-3 years, it could be every 6-7 years. I am right at 6 years. The reason it varies is based on the type of injury/disability when benefits are first granted. I read up a bit on-line and feel much better about it. According to everything I've read, about 93% of people whose benefits are reviewed continue to receieve full benefits.