Ehlers-Danlos Syndrome Support Group

I was diagnosed in November of 2011 with Vascual EDS by Dr. Howard Levy at Johns Hopkins. I underwent craniotomy procedure a week later to clip a cerebral aneurysm on the main communicating artery in my brain. The aneurysm was found in September at a 4mm size, October it grew to a 6mm and by the time of surgery it was 10mm...from my research this seemed nearly impossible for an aneurysm to grow so quickly. I was given a 50/50 chance of surviving the procedure...well since I'm typing I clearly survived, but I am not the me I was before. In addition to the EDS diagnosis I have the inability to swallow solid foods and gastroparesis related to the EDS...I have lost a total of 70 lbs in just over 14 months...I know this doesn't sound drastic, but I lost 55 of those lbs in 5 months...and I struggle daily to even maintain enough caloric intake to get out of bed and try to function. I am a single mom of two teenage girls and I have been instructed by my doctors (yes multiple doctors) not to return to work due to the increase of the stress on my cranial vessels and the malnutrition I am suffereing from.

Is there anyone else out these experiencing these same issues? I see the neuro surgeon again in May for a follow up of an "unclear" issue in my last MRA of the brain. I pray there is no more aneurysms this soon. I already had to say "goodbye" to my girls before the last surgery.

Any info from others would be appreciated.
Posted on 04/30/12, 12:31 pm