I was active... played soccer, scuba dived, drove a motorcycle, rode mountainbikes, played guitar, weight trained about 5 times a wk, even did the personal trainer thing... came out in the 90's... I thought I went thru it all (I even contemplated writing a book) but life is never that simple. My whole life revolved around what to tell my then husband and our little daughter.
After telling my doc I was a little dizzy putting my head back, he ordered an mri. Thank goodness he did because they found the avm. It was late 2006. It was so rare that not only have I never heard of it but my neurosurgeon wanted to show my xrays to his students. The avm was located in the cerebellum right next to my brain stem. They said it was there since childbirth. If it had ruptured... well I'd stop breathing right then and there. So, I had no choice but to have a crainiotemy to remove the avm. The surgery itself took hours but they told me they got it 100%.
While this happened I was working full-time as a Senior Technical Support Specialist (computers) in the Student Loan industry. I have to laugh at this now but at the time I was told I'd be back to work in three months by my doctor. The therapy took longer than that! To the credit of my previous employer they waited about three months before I was let go to "give me a better chance to receive my long-term disability".
Fast forward to today... I no longer have a job, no health insurance, the Student Loan industry has been turned on its head (good thing I didn't stay), my little girl is a sophmore in college now and I still have double-vision, dizziness and facial palsy as the result of the surgery. Yes the nausea finally subsided and yes I have come a long way just learning to walk again. But what year is this? Not being one to wallow, I used the time to get my MBA and graduated April 2010 with an "A" average.
I'm greatful that I'm alive but the surgery was nothing but life changing. Yes I too tried to get Social Security Disability and was denied. But I didn't even have a bleed. People look at me now and think I had a stroke and makes job hunting just that much harder.
It's a long time coming but I'm really glad I found this support group. Next step anyone? Oh and sorry for the long post.
Do not worried about it for the long post!!! im sorry you have to go through this sometimes it is a long journey for us. But it is gonna be better you will see. and do not get frustrated, reapplied for social security higher a lawyer they take a porcentage of the first check, the social security check it helps a lot with our condition. But do not give up every thing will be better is like we were reborn again. Congratulations with your A average degree… Do not give up my friend have faith everything will be better… Good luck and congratulations once again
Hi Suzy. I have yet to see anyone who got accepted for Social Security Disability the first time. I know one person who contacted their congressman. Surprise…they were accepted the 2nd time.
I wonder why that is? I corresponded with someone on this site who wrote a letter to her congressman or congress woman (not sure which one) complaining about the process. Since I didn't even have a bleed and they say they removed the AVM 100% during surgery, I just resigned myself that I would not receive it. But no, it doesn't surprise me that they were accepted after contacting their congressman...lol. Thank you for the feedback.
Suzy, there are so many of us fighting for Social Security Disability. Makes me crazy. First time denial is pretty much the norm, without question. I was denied twice. That’s when I hired a lawyer. I was awaiting a court date to go before a judge to appeal the final time (it was supposed to take a year and a half to get a date). My lawyer called me one day and told me that I was approved. Because there was such a back log of cases, SS gave special authority to a handful of lawyers across the country would could review cases and approve if they believed the case was “worthy”. I guess I qualified. Brain injuries are notoriously difficult to prove because we all look so “normal” on the outside. Also, you’re young, far younger than I was when I had my bleed. SS tends to discriminate against younger folks. Your best chance is to hire a lawyer. By law they only get paid if they win your case and there is a limit on how much they can get, I believe the amount varies by state. Don’t give up yet, but you’ve got a limited amount of time to file an appeal, so don’t wait too long! Good luck!!
Absolutely! While you are quite fortunate never to have had a bleed, if your disabilities are such that you simply cannot sustain gainful employment, you can qualify. You can even qualify for partial disability if you are able to have some kind of employment. Talk to a lawyer. They usually all have free consultations, but make sure you find one that specializes in SS disability cases. If they don’t think they can win it, they won’t take your case because they won’t get paid. Also, it’s very important to be under a doctor’s care. Doesn’t necessarily have to be a neurologist, just someone you’ve seen recently about your symptoms.
Well that’s the kicker because I no longer have health insurance and was fired from my last job because I didn’t make goals because I didn’t work fast enough. While I was working I did have another MRI done which showed I was AVM free. But right now… no doctor. But I will contact an attorney anyway. Any recommendations?
I was there too Suzy. After I attempted to go back to work (did not go very well!) I left the company. I then lost my health insurance and my income and at the time I was the primary bread winner for my family. (good times!) But I digress…anyway…Go to any primary care doctor that you like. You just need to have records showing that you’re being seen for whatever symptoms you have. I know the cost is a concern but you’re gonna have to try to do it. When I let my company I wasn’t seeing anyone either but the depression kicked in, so that was a good reason to go see a doctor. As for the lawyer, use the Google and search for SS disability attorneys in your area. Good luck and let me know if you have anymore questions.
Trish, tried contacting an attorney regarding ssi and they say that I simply don’t qualify. So onto job number five… lol. Hope you’re doing well. Sorry I haven’t kept up but you know what they say about brain surgery…ok that wasn’t so funny. Again, hope you’re doing well.
YOU KNOW, IT'S NOT A FARE FIGHT, IT SEEMS AS IF THE AVM HAS THE UPPER HAND! I HAD MY LAST SUGERY (I'VE HAD THREE) IN 06. I'VE HAD DOUBLE VISION EVERY SINCE MY FIRST SURGERY IN 1995. THE DIZZINESS THAT YOU FEEL WHEN YOU LOOK UP I ALSO EXPERIENCED, FOR ME IT WAS VERTIGO, IT HAS GOTTEN BETTER WITH THERAPY. I WAS ALSO DENIED MY SOC, FOUGHT FOR IT AND ONE. EVERYONE ASK IF I HAD A STROKE BECAUSE OF MY FACE, I KEEP EXPLAINING BUT PEOPLE HEAR WHAT THEY WANT. I THAT YOU KNOW WHAT I MEAN! I FEEL SOMETIMES THAT I'VE MORPHED INTO SOMETHING THAT IS ALMOST UNEXCEPTABLE AND NO MATTER HOW HARD I TRY THINGS WILL REMAIN THE SAME, BUT THEN I SHAKE MYSELF AND SAY SNAP OUT OF IT! OK, I'M GOOD!
Sounds like we have a lot in common Katrina. I finally got disability but had to get my Senator involved. But that just happened and Medicare comes along with that. Glad we’re friends and write anytime.
whew hoo! I'm so glad for you! It madr me happy and I'm not the one who has been trying! but I'm very glad you did. I'm glad were friends too! God Bless!