Today is officially 3 weeks after my brain surgery, an awake craniotomy, to be exact, done on 05/29/2014 at Baptist Hospital in Miami. The neurologist told me after the latest hospital admission that “this is a marathon not a sprint” so I think the most appropriate and emotionally healing thing today would be to put down here and as much as I can to celebrate up to Day 21; the baby steps and the huge improvements that I or anyone have experienced and never expected. And thank everyone for every happy thought, good wishes, prayers, blessings, dinner, visit, phone call, text message, hard work, good juju, vibes and everything else out there!

**As a disclaimer below, you will read about speech and communication loss after surgery which I have literally regained in the past few days so in advance I apologize for any confusing parts.**

Last thing I clearly remember as close to the start from the morning of surgery is being rolled into the operating room around 9am with a few IVs in place, hospital gown on, nurses/anesthesiologists around, tons of machines, and VERY bright lights! I must say that the anesthesiologist  did an absolutely AMAZING job putting me out because I would’ve imagined some pain by getting my head cracked open, my brain being played with then being awakened for surgery. but by the time I was brought out for the beginning of the awake part of the tumor removal I didn’t feel anything! I didn’t feel groggy or like I was drugged (even though I’m sure everyone in the O.R. would disagree). I didn’t have my glasses or contacts on so everything was blurry (because I’m normally blind without them) but the staff was pretty accommodating. They had me (1) reading sentences, (2) words off papers, (3) defining them, (4) saying synonyms/acronyms, (5) using them in sentences (6) answering random questions and even (7) singing songs which was all pretty interesting and distracting with the amount of noise and movement going on in the room. They did keep checking on comfort and pain which I was surprised wasn’t anywhere near what I expected it to be for having my head and brain sitting out there. I totally ended losing track of time and had a minor freak out when the neurosurgeon came around to talk to me for an update. I guess I was surprised to see in front of me instead of behind my head working even if it was for an update.

After the surgery I do remember going to the recovery/post op room and feeling ok with a slight headache (as imagined) but actually not as bad as I was expecting. I also was worried I would be bandaged and look like a swollen monster and amazingly didn’t so materialistically it seemed ok. That along with the news that 65% of the tumor had come out was pretty much successful to me. Obviously higher than 65% would have been ideal but something is better than nothing and good news is ALWAYS better than bad news. #1 I had made through the surgery.

I got admitted up to a room on the neuroscience floor and was actually impressed that I could write. Not the best handwriting, spelling or coherent sentences but pretty good for such a recent brain surgery (in my opinion) so I wrote my questions for the Neurosurgeon. Luckily he came by very soon after I finished them — one of them which was “should my fingers get tingly when the steroid get injected (goes away in a few minutes on the right hand)?” and another “is studdering and struggling to find words normal? It feels my thought & words disconnect when trying to explain things. Right now very rarely. feels like more common after steroids” because just minutes after he had left my room I ended up having a major seizure. He had just walked out of my room and my mom was able to grab him outside the door while I was seizing, he rushed back in to hold me while they medicated me to stop it and keep me from hurting myself. It was the first seizure I had EVER had completely awake so it was pretty terrifying. To this day I have no idea how it even effects the actual surgery/delicate brain that been so recently operated.

Dates and time did get VERY fuzzy after that so I’ll just list the major speed bumps (that I can remember) for now then come back with details once I get better timelines from my caregivers, “nurses”, family and loved ones who have been awesome of being my brains, eyes, ears, memories and chaperones the whole time.

Ended up having two different hospitalizations (05/29/14-06/03/14 and  06/05/14-06/10/14)

– Brain Surgery

– Stroke

– Brain Bleed

– Loss of Speech/Understanding/Writing/Communication

– Loss/Weakness of Right Arm/Hand/Face

– Anxiety Attacks

I’m very glad to say, and really have ZERO explanation about how, I am now speaking, understanding, writing and right hand/face/side is working. Every time I asked the doctors or therapists or looked online I found different ranges but all pretty much said between 4-12 months of recovery depending on the reason and gravity of the loss so regaining the ability this quickly was definitely not a thought in my immediate mind.  I know it sounds strange but I don’t even have the words to explain how happy I am to just have words period! It was THE most frustrating thing I have ever experienced. At first I couldn’t understand ANYTHING. Whatever people said didn’t even sound like words, they were just noises, then they became words but I couldn’t connect them to what the words meant, then I made the connections for very short sentences and in my head could make full responses but what came out of my mouth didn’t match my brain was forming. Eventually I realized this and just shut up. I knew the sounds I was making weren’t what I should/wanted to say and I just didn’t know how, my writing and spelling wasn’t either so basically I couldn’t communicate without getting exhausted. I resorted to crying. I don’t even want to know how many boxes of tissues I went through. Once the hospital started sending speech therapists they started teaching me how to read and pronounce words again which helped quite a bit, for reading and if I knew how to spell a word then I could write it and pronounce it using their technique but it was exhausting too. Little by little I did start to see progress with the homework but the daily life still didn’t feel like it was going very far, that’s where my family and friends helped. All of a sudden that just started working and I couldn’t be happier. Not going to lie, it’s not 100% and it still has it’s glitches but a big leg up and enough that I can work from there a lot more.

I’ve started taking piano lessons after 10+ years which is very exciting and therapeutic.

I don’t think I (or anyone for that matter) would go into something like brain surgery completely ready. I don’t think I came out 100% right but I think I’m finally understanding what the neurologist meant when he said “this is a marathon not a sprint” and I know it’s hard and against my nature but I need to find a way to do it, to make it work… there is no other option for the best results.

-V

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