Turkey Trot 2016

5 years ago, almost to the day, I was diagnosed with a cerebellar AVM. As if that wasn't enough, after a complication during surgery a couple of months later, I was faced with relearning to walk. Not able to stand without assistance, I made a goal to complete a 5K. After much hard work and amazing therapists, I was surrounded by my friends and family as I ran through the finish line of my first 5K in September 2012 Since that day, I promised myself that once a year, I will complete a 5K because I can!
This year I really wanted to do a Thanksgiving Turkey Trot, unfortunately all of the ones I could make it to were sold out. Instead, I mapped 3.1 miles and ran from my apartment to the Thanksgiving Day Parade. Without any training, I completed it with a little over 15 minute miles.
As I ran the last mile, I realized that this will be my first (of many more) 5Ks post-AVM life... and that felt great! Today, and everyday, I am thankful for my health, friends and family. Happy Thanksgiving!!

It isn't official until it's official

After my angiogram, I had the films sent to Arizona and waited for them to review it... I called to tell them I didn't need them to review it because I was already told that they saw no AVM. The people in the Arizona office told me that the doctor here might have not seen any AVM, but that doesn't mean there wasn't any residual vessels that need to be watched or taken care of, etc. So, naturally, my elation was short-lived and I went back to feeling uneasy until I heard the final word from Arizona. Days and days past and I hadn't heard from them. Finally, today (2 and a half weeks later) I got the call I've been waiting for... "There is no AVM and no residual vessels affected. No need for any follow ups in the future with neurologists or surgeons or any radiation or screenings. You're cured!" 

And now to celebrate, I will sleep soundly tonight! 

Great day! :-)

xox

Amazing Victory for Mel

I went into NY Presbyterian hospital at 7 am today and was taken into the angiogram by 8. I was awake during the procedure but they injected me with meds to calm me down. During the angiogram, the doctor was telling me when to hold my breath, when I would feel warm/burning sensations and when I would see sparks or clouds. It was actually one of the craziest things because I literally felt them in my brain for an hour, poking around, taking pictures and injecting dyes. 

The doctors were talking throughout the procedure to each other in medical terms I don't know so I wasn't really paying attention until the surgeon said "You're cured." "What? Me? Does that mean there's no AVM???" "Yes. That's right, your brain looks great-- no AVM, the gamma knife worked." So obviously I started hysterically crying on the table. One of the nurses asked if I was in pain or in joy? I said joy!! 

They finished the procedure and closed up my wound (more painful than I remembered from last time-- I was screaming in pain, crying from joy, and it was just a crazy scene.) I opened my eyes and my left eye had a blackness over it. I began to panic a little that I couldn't see. The nurse did some neurological and vision tests, I failed them because I couldn't see from one eye. She told me that he last injected dye to my left side that was next to the optic nerve so she was confident it was a temporary loss. 

I was rolled out of the OR and with my eyes closed and my head splitting, I whispered to my family "guys, guess what? My AVM is gone." After they spoke to the surgeon I said to them: "Guys, I made up a joke .. What does AVM stand for? ...Amazing Victory for Mel!" And then I fell asleep. 

I had a splitting headache from irritation from the catheter in my brain and I was nauseas as ever! It made me more dizzy and nauseous to have my eyes open, since I couldn't see out of my left eye, so I laid there with Abigail (my giraffe) over my face, an ice pack on the back of my head and an ice pack on my puncture wound for hours. I was in and out of it for the next few hours. I couldn't lift my head and was in excruciating pain when I would open my eyes and/or move my head. The nurses were incredible and super sweet.  But I was in bad shape. They pumped saline and antinausea into me for a few hours and I drank a ton of water-- the verdict was that once the contrast would flush out, my vision would go back to normal, the headache would subside and because of those, the nausea would be gone. 

I was discharged from the hospital still nauseous and with a headache, but thank God, my vision was back to normal! Now I'm home, nausea subsided, vision is normal and now I'm just waiting for the headache to vanish.

Since November 2011, I have had AVM on my mind, literally and figuratively. And tonight, for the first time in a long 4.5 years, I will sleep soundly. 

I also just wanted to take a second to clear up any confusion about what an AVM is: 

AVM stands for arteriovenous malformation (arteries, veins... malformation) it is a tangle of arteries and veins that is a random birth defect, not genetic, that can happen to anyone,  anywhere in the body. I was lucky enough to have it in the prime real estate of my brain. 

An AVM is not a tumor, it is a vascular malformation... A cousin to an aneurism ... If the doctor hadn't screwed up in 2012, this road to recovery would have been much shorter. But now, March 16, 2016, I am officially AVM free!! 

Thank you to everyone who prayed, called, texted, facebooked and supported me and my family throught the last few days and over the last 5 years!! The braincapades are over.. Time to celebrate!!!! 

Braink You all for being incredible people!!! Xox

Here goes nothing... err... everything!

This week has been a roller coaster of a week!
I got my last 2 doctors reports: "Inconclusive: cannot tell if there is an AVM based on the MRI, [I] need to go to Arizona for an angiogram." Not quite the great news I was expecting, but I was expecting to go to Arizona for an angiogram, so that's good. I feel comfortable with the Arizona doctors and even though it's a fairly routine procedure, a person will still be inside of my brain and I only want someone who I trust doing that-- that made it worth my trip to Arizona.
BUT WAIT!
Then everything changed.
After a week of swirling logistics, stress and tears, I will not be going to Arizona for the angiogram. I will be staying local in NYC for it. My neurologist, who I trust, referred me to a Dr. Pierre Gobin at NY Presbyterian and between his referral and a few friends of mine gave me a good review on him and his "Health Grade" is 5 stars, I made an appointment for this Wednesday, March 16th.
I will be going in in the morning for an 1-1.5 hour angiogram followed by a 5-6 hour recovery in the hospital; then released (it's outpatient) and I go home to recover on bed rest for a few days. They will be sending the pictures they take to Arizona so that my doctors, who I trust there, will review my case and we will take it from there.
There isn't a braink you card big enough to properly express my gratitude and appreciation to all of my friends and family who have been guiding me and supporting me through this crazy week!
xox

Off to a GREAT start!!!!

So here's big update for yall. I went for my 3 year MRI this morning. (After my gamma knife surgery in 2013, they told me to wait 3 years and then I will know if the AVM is gone; so now is my 3 year mark.) While I was filing out my forms, I was hysterically crying filling out my brain history; thinking of how much this AVM has put me through and how crazy the last 4 years have been because of it. I went in for the MRI, which I am basically an expert at by now, and cried more as I laid there thinking about how my gut is telling me the AVM will never be gone and MRIs will be my regular routine for life. When I came out, I asked the technician if I had an AVM anymore. She was not allowed to tell me, even though I begged and cried... Instead, she made sure to tell the radiologist to read the scans quickly and let me know. So, this week I am waiting for the radiologist at the MRI place to give his report, my neurologist to give his report and my Arizona doctor to give his report. As long as all of these reports say that the AVM is gone, I go to Arizona next month to get an angiogram and make sure that it is really gone and not just MRI camera shy.

So HERE is the big news: the first of the three doctors gave his report... I have scar tissue (as expected from my brain history) but, HE CANNOT FIND ANY AVM!!!!!!!! Now we wait for the next two days to hear from my other two doctors to confirm this report and then were off to Arizona!!

YAYAY!!!!! March 1st, you are a great day!!!!!

Braink You for Another Healthy Year!!

Here it is again, February 23rd. 

For the past 4 years, February 23rd has been a kind of celebratory day for me, a day I marked with braineoke parties, brainaversary meals and brain themed goodies. My rationale was that I was celebrating life, celebrating survival and resilience... Celebrating weird stuff. 

This year the date has a different connotation to me. I have an appointment with my neurologist today, potentially one of the lasts, where I will get a script for an MRI, potentially my last, which will tell me if the AVM is gone or needs more treatment... This year, February 23rd, again a pivotal date, but this time it's the beginning of the end of a long road. So there will be updates in the weeks to come, hopefully great ones, and there will be stress and crazy nerves... But this year the celebration will not be on February 23rd, it will be in April, hopefully the end of my long road to recovery. 

Thank you to everyone for your emotional support and putting up with me the last few months, but I see the light at the end of the tunnel!!! 

Happy February 23rd!