Currently…
I’ve been meaning to post, but I didn’t know how busy and tired I would be preparing for my surgery this Thursday (March 29).
I was discharged from the hospital a few days later after convincing my doctors to go home and assure them that I would be well taken care of. When I was discharged home I was in no control of my body. I couldn’t walk, I loss fine motor function of my right hand (I’m right handed), I had nerve damage on my entire left side of my body (even to this day), I had/have hearing loss on my left ear, ptosis (drooping of upper eyelid) of my left eye, I also have some drooping on the left half of my mouth, and minor memory loss. Shortly after I was discharged it was Christmas and I got to spend it at home with my family. When I came home it wasn’t easy, I was fully dependent on my family, mainly my mom and sisters. It was difficult because I am a very private person. They helped me get dressed, shower, shave when needed, use the restroom, get into and out of bed, eat, and were assisting me with all activities of daily living. With my inability to care for myself I had to re-learn how to be independent again. I started Physical therapy in the beginning of 2017 twice a week. I continued with my PT for roughly two months with the main focus on regaining my ability to walk. After some slow progress, I progressed from being restricted to my wheelchair, to a walker and finally walking on my own. Early March 2017 I had an appointment with my neurologist/ surgeon to see the progress I had made since surgery.
When I met with my neurologist I was able to walk on my own with an unsteady gait. I had regained most, but not all fine motor functions of my right hand. I still had issues with my hearing and nerve pain, from the nerve damage that occurred from my stroke. I was prescribed Gabapentin to ease the nerve pain and hopefully help me sleep at night. I was then scheduled for a MRI for May 2017. My neurologist wanted me to continue healing a little longer before the MRI so that they were able to notice if my stroke affected the outcome they were hoping from my embolization. After my appointment my neurologist was hesitant to discharge me back to work. It wasn’t until the last week of March that I convinced her that I was ready and prepared to resume work and slowly start reliving my life. I was released to return to work part-time. I resumed to work a year ago on March 31st, three days a week. I continued with my PT on Mondays and Fridays to continue with my progression. I was slowly but surely getting back into the groove of my life, of course a little harder than before, but some type of normalcy was all I needed.
Before I realized it, it was May and it was time for me to go in and have my MRI done. I would have my MRI and a week later an appointment with my neurologist to read the results. I am not going to lie I had a bad feeling that my MRI would show some sort or problem, I was bracing myself and just preparing. The day of my appointment my neurologist went in and happily said that the results of my MRI came back with no new signs of bleeding or damage and that the embolization had not been affected by my stroke. She was very happy with the outcome as was I. My doctor had told me that she wanted to give me a break from tests and appointments for a while so I had a follow-up scheduled to see my progression for my birthday in November 14, 2017. When I left that appointment I was relieved and so happy I knew that the struggled I was overcoming and been faced with were all worth it for that moment.
For the next 6 months I worried about nothing other than my continued healing, my job, family and returning back to school. I celebrated my 7 year anniversary with my boyfriend in July. I registered for classes and started back at school at the end of August. Sure, not everything went smoothly I had some obstacles that I continue to deal with to this day. My nerve damage hasn’t really ever gotten better I’ve had to learn to deal with the discomfort since the Gabapentin caused to many side effects for me. My fine motor skills, though they progressed were not as rapid as they were originally so writing quick notes during class was tough but I managed. Walking to and from classes was I think the hardest challenge of all, maneuvering up stairs, through crowded hallways and on top of it all lugging heavy books was not easy. Before the semester was over on my birthday I met with my neurologist as scheduled earlier that May. She was happy with the my healing and my ease back into my normal life before my diagnosis. The visit was good. She scheduled another angiogram for early January 2018 after the holidays, just to assure with more detail that my AVM had not grown and there was no change as seen through my MRI results earlier that year in May. The semester ended and I was overjoyed with how I it turned out despite all my struggles, I was proud of myself! The holidays came and went and before I knew it I was embarking on a new year, 2018.
As soon as the new year began I had to brace myself for yet another angiogram. This time I didn’t have much nerves. I knew the procedure and was very confident that I would be okay since I had such great healing and MRI results. I was not worried at all. I waited the weekend for my neuro appointment that upcoming Tuesday. The appointment would tell me the results of the angiogram. That Tuesday I was planning to go in for my appointment that was scheduled early that morning and then go into work right after, but things don’t always go as planned.
My mom and oldest sister went with me to my appointment since we work and carpool together. We arrived on time and went in to wait for my neurologist to come in and read the results. She was oddly taking a longer time than usual, but I figured she was just busy that morning and attempted to wait patiently for her to come. When she finally came in I just felt it, something wasn’t right. She walked and swiftly said “ So i’m going to show you all previous images of your AVM up until now, then we’ll talk about what are next move will be”. That was it hearing that “ what are next move will be” I knew something was definitely wrong. I think I only caught it because my sister and mom showed no reaction. She continued to pull up the image from when I was first diagnosed with my AVM before any treatment was done. The she showed the image of when it was completely gone after my embolization. Lastly she pulled up the images of the most recent time and it was back. It was like nothing had ever been done about it. It was grown back to it’s original size and is still growing. Seeing the images my heart dropped, I had a knot in my throat and suddenly everything around me went silently. I was trying my hardest to keep it together, but I couldn’t. My world shattered yet again. My neurologist told me this time I had treatment options again. The first option the called it the “conventional method” where I do nothing but monitor my AVM closely for growth but run the risk of it rupuring yet again. This time around a rupture would be more dangerous than the first and would probably result in emergency surgery which she informed is never a promising option. My second option was radiation of the AVM, the risk with this option is the location of my AVM is close to my brain stem. So radiation would be targeting the AVM but may affect the surrounding area which would be to dangerous and high risk since it is so close to the brain stem. Lastly, was surgery a craniotomy to be exact, the risk like any is damage to the brain stem that can affect a multitude of things, excessive bleeding or the thing we don’t like to see is a risk death. These results were very unexpected, I was blindsided to say the least so my neurologist gave me time to digest what I was just told and think about the treatment options available, I had a follow up to inform her of my decision on February 20th. If you didn’t already know I made the decision to go ahead with the craniotomy, and it was quickly scheduled for March 29, 2018 at 8:15 AM.
My brain surgery will take about 12 hours. I will have a angiogram completed during my surgery so that my neurologist can assure the remove the entire AVM. I am expected to spend 3 day in the neuro ICU and 4 days in a regular recovery area. I will have my head shaved on the right side behind my ear. I will have an incision made from the top of my ear curving into the top of my neck. I am expected to have some swelling of the face, hearing loss, vision issues and body soreness. My doctor assured that my vision, hearing and face will go back to normal after a few days.
So that leads me to now. My family and boyfriend are AMAZING we had pre-Easter this past weekend since I will be in the hospital so I can enjoy it with everyone, especially my god daughter. They have assured that I’m okay and feeling good, they are my everything and I am so grateful for them all. Now, I am a day away from brain surgery. I’ve heard all the comforting word. But despite trying to stay positive a little bit of doubt always make its way through and that’s the scariest part. The not knowing and the uncertainty of it all. The prayers and well wishes ease my mind and bring me comfort, so thank you!
While I am recovering my sister Gabby, or my boyfriend Joseph will be updating you all on the status of my recovery. Stay tuned because there is more to come and keep the good vibes, well wishes and prayers coming my way. My family and I sure do need them.












