Jen’s Vascular Malformation

Hi! My name’s Jennifer Do and I go by Jen. I’m a 19 year old college freshman attending Northeastern University in Boston, MA. I moved from Houston, TX just this past September in 2021. Time flies!

 

My story is a long one, so thank you for taking the time to read it.

 

Since birth, there’s been a bump on the right side of my forehead. Or at least that’s what my sisters and I call it. The doctors called it a Micro-cystic Lymphatic Malformation when they diagnosed me when I was 9. I called him Bob haha. My family decided it was the best idea for me to get surgery. It was a partial resection so currently there is still a big portion of the malformation on my forehead. For reasons out of my control, my malformation had not been followed-up on for the past 10 years. In those years, the malformation gave me mild head/eye aches; and in more serious cases would leave me bed-ridden in pain. Ibuprofen was my best friend.

 

After coming back to Boston from Winter Break, I realized I was getting constant head/eye aches in my bump. For about a month, the aches persisted. That’s when I realized my eye was starting to swell, it was bloodshot, and bulging out. It got to the point where my right eye wasn’t able to close all the way. The pressure on my eye gave me double vision which worsened over time. On March 21st, I decided to go to the ER at Massachusetts Eye and Ear. After getting an MRI scan, surgery was required. I was admitted into the hospital for a diagnostic angiogram. 

The diagnosis: my doctor told me my malformation had actually changed and morphed into a Vascular malformation and that the pressure behind my eye was caused by an abnormally large connection between my arteries and veins. Because I was in the middle of my semester, we decided it was best to put me on steroids to help with the symptoms and wait till the end of the semester to get a surgery called an Endovascular embolization.

 

My first 8-day course of steroids took a huge toll of me. It made me depressed and gave me sleeping problems. There was a 70 hour period where I was only able to get 7 hours of sleep. After receiving my second course of the steroids, I realized they were only keeping the symptoms at bay. I knew then that I couldn’t wait to get the surgery done and booked it ASAP.

 

But good news, the surgery ended up being extremely successful. So successful, that our initial plan of doing a second Endovascular embolization was not needed. And I’m extremely happy and thankful to Dr. Aman B. Patel for that. I’m on another course of steroids as of now and have been recovering from my surgery. I’m still having mild head/eye aches as well as a new symptom that looks like a camera flash in my vision. I’m also figuring out how I’m going to finish this semester as it’s ending very soon.

 

Moving to Boston and living on my own has been a journey, especially with everything that’s been happening this past month. This recent surgery wasn’t a complete fix to the actual problem at hand. It was only to address an emergency. I still have a long journey ahead of me as I’m planning on completely removing the malformation in the next couple of years.

 

I was raised to be independent and have been, but I learned that asking for help when help is willing to be given; it isn’t wrong or harmful.

 

So this is me asking for help.

 

I’m not sure and have been extremely worried about how I’m going to pay for my ER visits, hospital stays, and my most recent surgery. I’ve had to take a break from working a job so I can focus on school. Because of these medical expenses, I am now worried about how I’m going to pay for school. I haven’t received much financial support from my parents.

 

Again, thank you for taking the time to read my story. If you are willing to give anything at all, it’d help so much.

 

Kindly,

Jen.