So, since my last update from the ICU, a lot has changed.
As most of you know, there was a bit of a hiccup during surgery and I had to spend 2 weeks in the hospital, 1 week in rehab re-learning to walk.
During this surgery the doctors found that my AVM which we thought was 1.5 cm, was actually 2.5 cm. They also found that my AVM which we thought had 1 feeder, actually had 2 feeders. Both of these findings made this surgery more difficult than expected.
After I woke up from my surgery, my doctors and nurses told me that I was great and they were talking about sending me home earlier than expected. Until, it came time for me to stand up and walk to the bathroom. I sat up in bed, but when I stood up, my knees buckled and I fell to the floor-- the nurses caught me. It was at that point they realized something was off. There was an unforeseen circumstance that no one was prepared for. They sent me for an MRI and found that since they had done this procedure in the cerebellum (the center for balance) I had swelling and one of the feeders that was feeding the AVM was also feeding part of the cerebellum, so when they plug that up, it messed up my balance, therefore affecting my ability to walk.
I spent a week in intense rehab therapy in the hospital. There they worked with me for 3 hours a day minimum with occupational and physical therapy. During this week I went from not being able to stand on my own, to walking with a walker all by myself. I even began to practice with just a cane.
I am back home now, but still using the walker, and cane. I am getting a lot better each day and pushing myself to the limit everyday to get back to perfect. I have home therapy coming to my house to work with me until I am good enough to be an out patient and go to a physical therapy facility. The doctor told me that he was very impressed with my progress. My attitude, motivation and age are all working in my favor to speed up this arduous recovery.
I met with my neurosurgeon yesterday and we decided that we will not rush to the next surgery. I will continue to recover and in May I will have an MRI which will give us an idea of how the AVM healed from this last surgery, and that will give us an idea of how we will proceed on to the next surgery.
Now that my AVM was knocked down from 2.5 cm to 1-1.5cm, the options for the next surgery are:
Gamma knife: radiation therapy. Basically its laser tag in my brain to burn away the rest of the AVM. It is an out patient procedure, but the effects of the laser won't be complete for 3 years. So that's annoying.
Embollization: glue treatment. The same thing I had done this last time.
Or there is the option to just watch it. I would then live with the AVM but go back periodically for MRIs to make sure it hasn't grown. So with this option, I will lead a normal life and have no limitations, but I will always have this AVM in the back of my head (figuratively and literally).
There is an option of open head surgery, but myself, my parents and the doctors all agreed that that will not be in my best interest, because of the location and nature of my AVM.
As always, if you have ANY questions please don't hesitate to ask!!
Thank you again to every single person who has been supporting me, praying, texting, messaging, reaching out in any way and helping me (and my family) through these last few weeks, each of you is helping me take one more step to a full recovery!!! <3
