Why are we not taken serious?

I am so frustrated after waiting 11 months I an officialy denied diability. I feel as if no one understands and they act like I should take a tylenol and go to bed... so discouraged and sad.

Most people get turned down the first time round. Contact your local congressman…they sometimes have people who can help. If that does not work then you may have to contact a disability lawyer. You may wish to contact …
She too has been battling to get Social Security. She may have some suggestions!

I did some reading up to see if that would be the route for me and it looks like a no win. It's like trying to prove your back hurts. It is very sad because as someone going through the motions of AVM I know how real and how hard it is. I hope you are able to get what you need. I'll be sending positive energy your way Pamela!

something like that happened to my the doctor that did my evaluation, he treatment like I was playing or there was no case with me. I got denied but between that week I had n appointment with my neurology. He said that I need to be in disability So my husband decidento hire a lawyer and in 1 month or less I have my disability. My friend don’t get discourage have faith, nobody knows how we feel unfortunately we are the only ones that knows. Good luck an reaply one more time.

Thank you Anabell I will keep moving forward.

I just recently got it. I had to get a lawyer and goto a hearing in front of a judge. The main reason I got it was because I get migraines several times a week. If you have a problem with headaches make sure you discuss them with all of your doctors and make sure it's well documented. My hearing lasted less than 10 minutes and I'm pretty sure he made his mind up within 5. Good luck.

I have been battling Social Security for 2 years And my bleed caused me Paralysis! Those of you Not paralyzed consider yourselves blessed! Neither my left arm or my left leg works and my left eye doesn't 'see- actually my Occipital lobe doesn't process what my left eye sees, which is an entirely different problem. I don't drive my auto anymore, and I can only walk short distances, so I am completely depedant on others for transportation. I can shuffle short distances and am attending physical therapy to improve my gait ! Next wednesday I have a Final hearing with Social Security dis ability. Wish me luck, after this I Will hire an attorney! I will keep all posted!


ty Jason and I am in the same boat as you with the headaches.

Pamela, I found here in Australia there is just NO BOX for s.s. for AVM's unfortunately. When we "look normal", it makes it so much harder to get our message over to "them"!
Fortunately, I did get my disability as I have brain damage but I had to go through "hoops" to get it!!! It is very frustrating my friend, but please, keep pushing them!! Good luck, I hope & prayer you get your pension soon!

Pamela, I'm so sorry you are going through this...So many people on the Network have had so hire a lawyer to get disability. From what I've heard, the lawyer will get your disability. You will be paid back to the date your disability started...however, in the meantime, it's awful!

Keep trying! You'll be in my prayers!

Hello Pamela. I applied in September of 2010....I received my first denial by December 2010 (while I was in the hospital for another bleed). I did an appeal and got backing from the congressional office.....and still got denied.....I just signed the contract for the attorney and am sooo fed up with this system. I've had an embolization, 5 bleeds, I have permanent damage, scarring, in pain all day every day in my head and back and mostly the left side. My attorney asked me to put in writing that I'm facing financial hardship (which I am as I have't gotten a dime in over a year) so that they can do an analysis of the up to date records they already have. It's called an on the record decision I believe. My rep at the congressional office told me that once I get my approval (Shes so sure that I'll get it.....grrrrrr) she will take the case to the congressman himself and submit it to the social security administration. This is insane. I can't drive or work or go to school....I'm stuck in this awful place because of the AVM and because I happen to look normal on the outside then deny deny deny. If we'd have taken drugs or something and done damage that was visible to ourselves then perhaps we'd have gotten it by now, no? I wish you the very best and hang in there my friend.

Don't give up! I was denied social security/ disability too... I immediately obtained a Social Security lawyer and my husband and I filled out all kinds of forms... I also went and had a neuropsychological test done and we presented the results of that test when we contested the denial. I was awarded the Social Security Disability and they even went back in time to when I had my surgery so that I was awarded ALL of my benefits.

By the way, when I got my lawyer, I was told that I wouldn't have to pay him anything unless we won.

DONT GIVE UP THE SAME THING HAD HAPPENED TO MY SON BUT I KEPT FIGTHING AND APPEALED . Wrote a letter with my own words. I asked them to take consideration of my sons birthdefect he was born with this condition.He did not provoke anything the way persons with drugabuse do this persons get approved right away, thank god it helped.


I didn't have to wait that long because I had a video hearing with a judge in Virgina. You might want to ask your lawyer about something like that. Good luck.

hummmm I will ask about that thanks Jason.

FYI ss disability only goes back 2 years now for back pay..

I hadn't heard that SS only goes back 2 years for back pay, how incredibly frustrating! When I got my aprroval (after almost 2 years) I was on the waiting list to go before a judge, after being denied twice and hiring a lawyer. I also was told it could be a year before I got a hearing date. All I can tell you is that it's worth it. In hind sight, I should have hired a lawyer first, it woudl have made the paperwork a lot less burdensome to my husband (I couldn't fill it out). A lawyer won't take your case unless he knows he can win, because it's true they don't received a penny if the don't win you your benefits! Keep fighting and hang in there.

Thanks so much Trish. The 2 year rule is fairly new I was told that when I went to my lawyer yesterday. I will hang in there.