Curious to know if anyone has applied for and received CPPD. I am only 35. Unruptured AVM. Side effects from gamma has left me with a seizures. Everytime I have a seizures they last longer; I am unable to speak during and afterwards. List my drivers license due to seizures; no licence no job unfortunately. I would to hear other people’s experiences.
Lost licence. Man I need an editor
I guess I was one of the lucky ones. Just wanted to share my short story.
Had my AVM removed 3 years ago. Bounced back to work 6 month after surgery acting like a true hero. Got to my manager’s good side. Then later that year, while on a company trip, ran my rental car into a Semi-Truck head on. I did not get hurt. Just minor bruises. My Neourologist claimed I lost conciousness before the collision. He reported to that, as required by US law, to the Dept. of Motor Vehicle. Lost my License. My Employer gave me an ultimatum. I have to get that back or I will loose my job. Back and forth dealing with the Neurologist finally settled in getting my license back.
Later, I thought to myself, What the heck!!! My Employer behaving this way? My Neurologist diagnosed me with Epileptic seizures? Sounded like a sure slam dunk. I was destined to be flushed down the toilet. No employer in their right mind would keep me or even hire me with this condition. My trade is Field Service Engineer. Been doing this for 25 years. Requires a lot of driving and flying off to different states.
So I had a talk with my Doctor of putting me for Long tern Disability after I explained it to him. Company I work for has Long Term disability plan that pays me 66% of my salary till I am 65 yr old. Currently 53. My Federal Social security Disability is also on file which will turn around and give me more money than the Company insurance cause I have 2 kids. Entitles me for more.
My seizure is a mild one and is controlled by medication. Been getting my pay and not working which is good. I lost that job which was very important to me but I had to decide for our future. My great enemy–nothing to do. I hope you are able to get something from this and I hope for the best in anything you do. If there is any info you need, Do not Hesitate to contact me or reply to this.
Thank you for replying Allan. This certainly wasn’t a path I would have chose for myself but I am making the best of it. Stress is one of my major seizure triggers. I worked 9 shifts post Gamma and had a seizure during or after 6 of those shifts. They will hold my job for a while but I don’t expect them to hold it forever. In Canada you have to be seizure free for at least six months prior to reapplying for your licence. Everytime I have a seizure the clock resets. Unfortunately, I was/am a part-time employee so I have no long term diability or benefits. I hate that I am potentially a major finacial burden to my young family. Sigh.
I haven’t attempted to apply for disability but I fear the day will come. I was a school bus driver/instructor and my company is threatening to take my position and 10 years seniority in 90 days. If I am not avm free it doesn’t matter anyway. I am frightened as I watch my 401k dwindle that I had to hardship withdraw and I am the sole provider of my household. Some of the post I have read suggest it is not so easy to collect disability for this because you can’t see it and they can argue that you can do something. If they only knew…but I imagine if you have a doctor and fight you (and I should I go that route) will be able to get some support. I have heard they almost always deny first applications and if they deny you twice you seek legal support and usually get somewhere. This is a hard thing to be hit with at our age (or any). Definitely apply for benefits, it’s the only way you’ll know. You are between a rock and a hard place.
The application is in Hardest thing to do, ever! My Neurosergeon filled out the medical information instead of my family physician. I’m hoping that makes a difference.
I have been working as a Social Worker most of my adult life. Most recently with people who have developmental and intellectual disablities. It is not safe for myself or the people I support for me to be working. I forget number sequences - not great for administering medication. I can’t talk when I am having a seizure and afterwards. I lose the use of my right arm. I don’t pick up on details like I use to. Being on the computer for too long at a time bothers me. I can’t spell or articulate well anymore. Some of the people I support could be dangerous and though I am trained to deal with it I’m not longer confident that I will interpret cues and behaviours. Very frustrationg.
Not to mention I NEED to nap!! Some moments I am wired and busy, busy, busy then I crash! So not only do we deal with having and AVM and the potential to have a stroke but also the side effects from treatment (swelling seizures etc) but then add on the side effects from the medication. It’s a wonder we even function at all!!
Tuesday I get to see a cardiologist and have another ECG bubble test. When they were testing for HHT they found an unrelated??? problem with my the left ventricle in my heart. Fantastic!
Sorry this has come off as a rant. I didn’t realize I was feeling this frustrated.
Hey Stephanie. As you are finding out everyone's AVM journey is a bit different. I needed a little bit longer time to rehabilitate and then tried to get back to work. That didn't work out. I guess people equate their importance to their job but there is a bigger picture. I know you will see it. In the meantime as hard as things are right now, the best thing to do is take care of your health and everything will fall into place. Feel free to lean on the wonderful folks on this site and vent if you have to! Whatever it takes. Just know no matter what, we (that includes me) are here for you always and totally on your side. And if I haven't said it before I apologize but welcome. :)
(btw... the editor comment was funny...)
Hi Gina. I still pop into the site once in a while.
I have applied for CPP. I am told I can expect an answer by April. I applied in September so it's along time to go without any personal income. I am optimistic but also prepared that I will be denied and have to appeal.
Hi Suzy. Everyone's journey is different. I a few fellow survivors that I speak with regularly and it helps me feel almost normal. I am 7 months post Gamma and I am hoping that side effects start to settle down soon. They started way early so they can any time.
How have you been feeling?
Feeling ok but dizzy all the time... it's been more than 5 years so I'm getting used to it. Good luck with the disability thing. Just started getting that in January. Long ugly story so I'll spare you. Best of luck and if you see Holly tell her Suzy says hi. :) Hope you're feeling well.