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AVM Survivors Network

Financial resources for avm survivors/ school post craniotomy


#1

Hello all. I had an AVM surgically removed February 2017 from the left temporal lobe. I am now in the process of going back to school and wanted to ask any of you what your experience was going back to school post surgery. I still get pretty fatigued and have difficulty concentrating, and the seizure meds don’t help but I wont be starting for a few more months. I also wanted to know if there are any financial resources or scholarships any of you may know of? Thanks for the feedback!


#2

Hi Alexandria! My granddaughter’s AVM was discovered when she was 14. She had GK surgery and was told that it could take up to three years to see the final results (shrinkage and closed off blood flow). During that time she didn’t want anyone (school administration) to know about it, so about the only person aware of her AVM was the school nurse and a coach. It has now been four years and test show that the results of GK surgery were successful, however she has been having partial seizures and is now on meds which cause her to be very fatigued. This is her Senior year of high school and she has finally allowed her mother to reveal this info to the teachers and counselors due to the seizures. They immediately applied for (I believe) it is called a 504? That was approved quickly with all of her medical records. It isn’t financial AID - more like educational assistance, such as more time to complete assignments and testing. It may even include tutoring if needed. The good thing about it is that this status follows her through college also. Don’t know how well that will work out - local high school teachers vs college professors - but, she has the paperwork and records in hand. Best of luck, and since I love Jesus too (not so much cats) :grin: - my prayers are with you!


#3

Hey there. if i can chime in, it is the section 504 of the IDEA act I believe. More info is at https://www2.ed.gov/about/offices/list/ocr/504faq.html. Saw the discussion and thought id share because it is something we’re dealing with right now. All the best.