AVM Survivors Network

Disablity from an AVM


I had a bleed on July 28 2014 of an AVM I knew nothing about, in the right basil ganglia. I have residual loss of feeling and control of my left side, (mainly my arm and hand), my next MRI is in November.
My doctor wants to look at me the first week in November. But he doesn't think that any intervention will result in a reduction of any future bleeds. (Gamma knife, catheter to block the branch with glue , or invasive surgery.)
I am a Automation controls engineer, I build automated plants and machinery. With the aforementioned condition, I don't feel confident I can do my job satisfactorily and not exacerbate my condition. My Doctor has told me he doesn't want me to drive , (seizure risk)and my employer seems to feel that putting me into the field is a risk.
I've worked all my life and never thought that I would be, “Disabled” in my life time. Now I'm faced with the prospect of no employment, I”m very apprehensive as to what my future holds.
I need some advice on how to petition for disability benefits.


The very first thing I would recommend it finding a lawyer who specializes in Social Security Disability. They don't get paid unless you win benefits and then there is a cap on how much they can receive. They take care of getting your medical records, the paperwork to Social Security, etc. Usually you are denied the first time. In that case your lawyer will handle the appeal. I was denied twice and was awaiting my date before a judge when my lawyer called to say I'd finally been approved. It was nearly two years of filing and appeals. I didn't hire a lawyer at first, only after I'd been denied the first time. I think had I hired one in the beginning it would have been a much smoother process. I know how hard it is to face the prospect of not working. I worked from the time I was 15 until the day of my bleed. It's an adjustment but you'll be okay. You just have to focus on the things you can still do! Best of luck.


Hi - I'm so sorry. I lost my job in Aug 2012 after a huge bleed in April 2011 (happened at work). I worked at Intel and bc I was in a manufacturing environment they had all sorts of procedures to get me help ASAP - but I can totally see that being in Automation would be a problem given your deficits. The only advice I can give is to go straight to your HR department. They should know what to do. Intel retains a firm to help you actually apply for Disability bc it can be kind of complicated. My Dad and the firm helped me. It will be interesting to see what others say. I know some other people on here have hired lawyers etc. It's good, though, that your doctor and employer have already weighed in. Now you just need to go through the right channels.

PS. When I lost my job my brother told me, Now you can do WHATEVER you want!
How's that for perspective? But I'm glad he's a visionary and grateful for his pep talk.

:) atnt


I agree that getting disability from SSA is a chore. The advice given by others to get an attorney specializing in Social Security (SSA) disability (Trish), and reaching out to others for help (Ann) is extremely helpful but also consider (and never rule out) getting assistance from your state rep or state senator. They have an amazing way of helping out when dealing with an agency like the SSA especially as log-jammed as they are. Best of luck to you!


I agree with all the recommendations of hiring a lawyer. Your livelihood is too important to leave to chance.


My neurosurgeon supplied ssa with a very detailed description of what happened, starting with intracranial bleeding resulting in stroke and left side paralysisand ending with which may cause patient to be out of work for 18-24 months.


Check fees if you do I think they are limited on the maximum they can charge


That's correct Mike. They recieve a percentage of your total benefits. It's 25%, not to exceed $6,000.


hi u know i got my first synptom on dec 2013. i have a very large size of avm in internal part of my brain im feeling heavy head ache sometimes seizure for past six months.. i never worried about and forget the problem i had and continue the job i have.. the small disappointment will lead us to severe problems.. i have no money to cure my disease yet dat s why im not get into treatment.. if i loss my hope i could not survive even for a single day.. so dont lose ur hope.. there r so many of us here to guide you and hear you tell us your problems share with us.. dont lose hope....


I actually used Binder & Binder. The process was easy and quick. I was never turned down. It did take about 7 months from when I applied, but I was approved. And the so-called good part about being on SSD is that that's not the part of Social Security that Congress is trying to chop. I even got a cost of living increase at the beginning of the year.

I hope this helps!



I gathered all the information I could find and spoke to as many people as I could before I applied for SDI. I’m 55 years old and paid into SS for 30 years. I had an AVM near my brain stem and had a cerebral angiogram June 27 2015 and a craniotomy after that procedure failed on August 5, 2015. I was receiving SSDI from the state of California for one year. I was told you have to wait a year before you can apply for SDI from the government. I was very diligent and had my application in online just after one year. I received a call couple months later and was asked a bunch of questions by an agent and answered them all very thoroughly. I never saw anybody in person. I think this was key in my case as my deficits don’t really show. I was able to explain the medical information and my rehab. A few months went by a few months went by and I received a packet of questionnaires to fill out. I was told when I filled out these questions I was to think of my self on my very worst day. That is exactly what I did, as I didn’t lie but may have exaggerated a bit. Once these questionnaires or filled out I return them as quickly as possible. A month or so went by and I was sent another envelope telling me to report to a medical center to have some doctors examine me. again I didn’t appear to have much wrong with me other than some aphasia and slow processing speed. Once they did the test I was told by the doctor that I would be receiving support. The whole process from beginning to end was difficult but I was persistent. I was one of the lucky ones Who received disability on my first attempt. It may have had something to do with my profession as I was securities trader and couldn’t perform the task of my daily workload.
for those of you that are going to fill out those questionnaires don’t use your best penmanship or type them. I struggled a lot and it showed. I had a lot of misspellings and crossed out words. I left all the mistakes on purpose. I believe this was key. They’re not going to give out funds to someone who is capable of performing writing tasks.
I began the process in October and have it complete by May. So don’t give up! Be diligent and willing to stay on the phone with these people. You can do it…



Hello Trish. My 17 year old daughter was declared disabled as 1/4 of her brain was removed April 2016. When we applied for benefits, we were told, she qualified for benefits but after we met with representative, we were informed that she was financially denied as I (mother) was collecting child support from her dad. I explained to them that although child support is court ordered; my ex does not pay on monthly. I was not heard, case was denied and closed. I have considered hiring an attorney as I could use help. She is impulse and cant be left alone. Gets depressed and can be a hand full. I have no help from her dad or family members. I am drained. I need some relieve. Any suggestions.


One of the fastest ways to work with through the system is your state Vocational rehab system. Not only can they cut through the red tape and SSA respects their recommendations over practically everyone else. But they offer tons of help in between. Transportation, adaptive aids etc. there are no means testing with voc rehab.

To give an example my grandaughter who suffered a severeTBI when we got hooked up with Voc rehab got her SSI in a MONTH and help we were never able to “get” Now as she is transitioning into adulthood they are providing a hab aid, job coach, training, evaluations etc. They can find something for everyone. FWIW the person at our local SSA who takes the SSI applications office is a quad on respirator who taps out the info with a soda straw in his teeth. His PCA takes care of his “bags” (urine and poop). He is an amazing young man.

@Alethea_Warrior with your daughter being 17 is she in school? Voc rhab is something that can be included in her IEP. You are going to get a lot LESS help so long as the sytem believes you are there to take care of your daughter indefinitley. (of course you will thats what parents do) But they need to know the goal is her independence otherwise they will blow you off until there is a “crises” after aqll she is being taken care of so they concentrate on those who are not.

I don’t mean to sound blunt but here it goes my wife and I have dealt with kids with “needs” for the last 40 years. 777.00 from SSI may take some financial pressure off but the money is gone in a minute. Nobody can live on 800.00/month. It is not a long term solution. You and your daughter need a lot more to insure a future than a few hundred dollars. But the SSI as part of total program is a lot easier to obtain when one is moving forward and availing themselves of every program available. Voc rehab will appoint a case manager to help you navigate everything. (at a lot less cost than an attorney who generally only “refiles” what you have already done.

Good luck



thank u for info provided. I just found release documents from hospital and will be contacting DARS. Need to get her name on waiting list for a vocational rehab.

True, cant survive on merely $800 a month. I want a promising future for her.


@Alethea_Warrior Obviously with a mom like you, she will have a great future. hang in there