Riding The Beast

It's been just over 6 months since I started this journey with my AVM bleed. The mode of transportation on this journey has been a roller coaster. I'll call it The Beast, since I'm from Ohio not far from King's Island Amusement Park, and it has an old wooden roller coaster with the same name. I spent that first week after the bleed in neuro ICU, I've had multiple CT Scans, a couple of MRI's, 2 angiograms, (one of which was an aborted embolization attempt), multiple appointments with the neurologist, a neurosurgeon consult where I was told surgical removal of my AVM was too risky, a radiation oncologist consult, a radiation mask fitting, then I had 5 radiation treatments within a week and a half, and a few weeks ago I finished up 3 days of cognitive testing. Riding The Beast through all of these appointments and procedures has been wild, and I am waiting for the end of the ride. But, I don't even know if there will ever be an end. Nobody at any of these appointments has been able to tell me if my residual symptoms will ever get better. There is no guarantee that the radiation treatments will even work to close the AVM. It's such a helpless feeling.

In coming to terms with not being able to concentrate and focus enough to work, not being able to tolerated stress, and with being so unsteady and weak physically, I decided to apply for SSDI a couple of months ago just in case things didn't improve. My short term disability would run out in June, and then there would be zero income. I got the application finished and then soon after received the Function Report that was to be completed and returned within 10 days. Well, that's easy for them to request. I ended up calling them to let them know I couldn't get it finished within the 10 days, and they gave me an extension. It took me 3 weeks to get through it. So, now they have that and my medical records and are waiting on the report for the cognitive testing.

I had requested the cognitive testing at an appointment with the neurologist a while back, because I knew that my brain wasn't working right, but I couldn't specifically explain what the issues were and I couldn't really prove it. I think it was a good call though, because after seeing the report, it supports my ongoing symptoms. So, I'm hoping it will help with getting approved for disability. But then I keep hearing it can take up to 2 years to get a determination and that most people are denied on their first try. So, more waiting, and this time waiting with no money. So, anyway, now that I have succeeding in scrambling my brain here before bed, I'm going to try to get some sleep. We will see what tomorrow brings!

Hi im new here… My short term disability ended as well…income is difficult to attain when my gait is off balance. My AVM happen in Dec 2013 and im trying by best to stay hopeful. Im having mild HA. I schedule app… Im guessing it coulb be some edema… I cant wait for this life lesson to be over but it has humble me.

We just need to keep getting up every day and stay on the road. It's been a wake up call to me and my family and friends. We are very lucky to even be here to type these messages! I still have residual symptoms too, and nobody has been able to tell me if they will ever get better or go away. I don't know what else to do except keep taking each day as it comes. Hang in there and keep putting one foot in front of the other!