What to do for someone who has an arteriovenous malformation

What to do for someone who has brain surgery for an arteriovenous malformation:

An interview with someone who has lived through it…

Please give a brief synopsis of the difficult life event that you experienced:

In August of 2010, I underwent two surgeries to remove a malformed artery in my brain.

Your Story/The Circumstances:

In late July 2010, I had a seizure while I was sleeping.  My girlfriend called 9-1-1 and I woke up in the hospital.  After a few days of running tests, it was determined that the seizure was caused by an arterial malformation in my brain that needed to be removed as soon as possible.

The day after I was discharged, I left Chicago, where I am a student at Columbia College, and flew home to my native Virginia, where I stayed under my parents’ care until the surgery.

Following the surgery, I had limited movement in my left hand, and had a difficult time with speech.  As a singer and guitarist, this was very frustrating.

Age at the time:20

What were some things that others did for you that helped the MOST:

My parents’ constant care was the biggest help. My grandmother and my sister visited, which also helped a lot.  In addition, many friends and acquaintances got in touch via Facebook, email, or sent cards to my parents’ house.

What were the WORST things that others DID or SAID:

I was consistently asked when I would be able to drink again, which was very bothersome.  With all that I had to deal with, I didn’t like that others were focused solely on what I couldn’t do, rather than my well-being.

Also, I really disliked hearing about how much better things would be soon.  It made it that much more difficult to accept that I wasn’t better yet.

What do you WISH someone would have done for you:

I don’t know if there was much that could be done aside from making sure that I was in as little pain as possible following the procedure.  I suppose it could have also helped to speak to someone who had undergone the same surgeries to see and hear how they’d improved over time.

Do you have any gift ideas or care package items that would have been helpful/useful during this time?

Care packages including television shows on DVD, music downloads, fresh fruit, and tea.

Can you give us some emotional insight to what someone in this situation is feeling/going through:

More than anything, I felt frustration.  It is difficult to know that your body isn’t as capable as it was prior to the surgery.  I constantly compared myself to how I was before the surgery, which made me feel even worse.

Is there anything else you’d like to add?

I’d like people to know that things do get better, but it’s important to give yourself time.  This experience has given me a new perspective on life in general, and has made me want to help children who go through difficult medical procedures such as I did.

A huge BluFairy Thank You to Alex Katz for sharing this information and insight with us. Alex is part of the band, Katz-Company and will be releasing a new album entitled Katz Company Presents: The Surgery Sessions.  50% of proceeds from this record will be donated to Children’s National Medical Center.