“What happens if the treatment is worse than the disease?”

So, I met with my neurosurgeon to discuss the next step in obliterating the rest of my AVM. The meeting didn’t go as well as I had hoped.

In the last few weeks, my endovascular neurosurgeon, Dr. Berenstein, sent my case to be reviewed by Dr. Lundsford in Pittsburg. Dr. Lundsford is essentially the founding father of radiation treatment for AVMs in the brain. His review on my case said that I was a good candidate for radiosurgery, and he is 70-90% sure radiosurgery would totally obliterate the AVM (but it would take up to 3 years to know).  

70-90% is a HUGE and unsettling range! So, I compiled a list of questions and I went to meet with the radio-surgeons who work at Roosevelt hospital (closer than schlepping to Pittsburg).

I first met with Dr. Ghattan (I had met with him last year regarding an open skull craniotomy) to discuss radiation treatment. He drew out my case for me and showed that my specific case is very tricky. My AVM is in the vermis (the part that controls my balance and my eye movement) sandwiched between the cerebellum and the brainstem—prime real estate. So, the trouble with my case is that it’s deep in the brain, and it’s in a very sensitive place.

If my AVM was not in such a sensitive spot, radiosurgery would be the answer for me.

The way radiation works is, they put a helmet on my head and shoot 200 beams into my brain targeting the AVM; each beam is too weak to cause any damage to the surrounding tissues on its way to the AVM by itself; but once they all meet at the AVM they add up to full dose of radiation and begin to harden the arteries involved in the AVM over a course of 3 years. The trouble is that with this radiation there will be spill over. Generally, spillover isn’t super dangerous, but if spillover hits my brain stem, it would cause permanent damage to my eyes or balance. Since they understand the real risk and severity of spillover, they would lessen the dosage of radiation and therefore, lessen the amount of over flow (but then the AVM isn’t getting the necessary dose of radiation.)

Dr. Ghattan reviewed my case with Dr. Parikh (a radio-surgeon at Roosevelt) and they made a fake measurement of what would happen if they set up the machine for radiation for my AVM. They found that with my case they had a 75-85% success rate with a 15-20% damaging spillover rate. Those are not comforting odds on either account.

Other than radiosurgery, my other option is that I can just leave it alone and wait… the unnerving part of that is that every year there’s an added 2-4% chance of hemorrhage, and every day I will be living knowing that I have a ticking time bomb in my brain that can burst at any second.  

As of now there are two types of radiation machines, the Gamma knife machine which uses gamma rays, and the linear accelerator which uses photon rays. They are basically the same when dealing with AVMs in term of the success rate and spillover.

Silver lining? There’s a different type of radiation that is being used on cancers and non-AVM issues. This radiation uses proton beams. The difference with the proton beams is that they can basically program it to not have any spillover. Without spillover, they can target my AVM with 100% necessary radiation. Obviously, this would be the best situation for my case—unfortunately, they don’t do it on AVMs yet; and if and when they do start using this method on AVMs it would take years before it would be tested, trialed, accredited, and then used.

So, now I’m left with 3 options: do I do the gamma knife or linear accelerator therapy—hoping to fall in the 75-85% and not the 15-20%; do I wait for proton therapy to be ready for me—which could be up to 20 years; or do I just leave it and hope for the best for the rest of my life?

Life's not about waiting for the storm to pass, its about learning to dance in the rain.

HAPPY 8 MONTH BRAINAVERSARY!!!!!!

To celebrate 8 months, and graduating physical therapy 5 weeks ago, I met with my neurosurgeon today. Our meeting was to discuss the future of my AVM. We were waiting for me to make a full recovery before we would even begin to discuss further touching the AVM.
The doctor was running a bit late, so while we waited, my mom and I went down to the rehab floor to visit all of my physical and occupational therapists. Everyone was super excited to see me and even more excited to see me WALKING. It was so weird to be back on that floor and walking around-- but it was really nice to see everyone there again!
Now, onto the meeting. Dr. Berenstein was very pleased with my recovery and the time it took me. But, he said I still do have a real issue of an AVM in my cerebellum.
So, what are my options now? Well he does not want to repeat the same procedure as February (the embollization) because he is: a) afraid of another complication and b) feels that he maxed out the amount of damage he could do to the AVM (damage in this case is a good thing-- we want damage to the AVM, we dont want damage to the rest of the brain) using that method. So as of now, it seems that the embollization option is not an option. That leaves us with the two options of doing nothing, monitoring it and hoping it doesn't hemorrhage OR doing the gamma knife, radiation treatment.
In a perfect world, I will be able to live to be 100 without any hemorrhage or complications from the active AVM in my brain. However, it is not a perfect world, and the reality is that I am still so young and have my whole life ahead of me. With those odds, it is a fair assumption that at some point in my life it will hemorrhage if it is not taken care of now.
The second option was the gamma knife, radiation treatment. ideally this option is flawless. And, again, in a perfect world, I would get this treatment to zap away the AVM and everything would go as planned and viola, I will be AVM free........ If only it was that easy.
The risk factor is 3% (thats better odds than winning the lotto!) 3% risk factor is higher than my 1-2% risk factor that I faced in February-- but I, of course, fell into those odds.
So, what kinds of risks are there with this? Well, gamma knife is a non-invasive procedure, so theres no added risk of opening me up. The risks are with the accuracy, level, and amount of radiation that is applied to the AVM, as well as the overflow.
The procedure shoots in hundreds of laser beams targeting the AVM with different levels of radiation once they all meet at the AVM the radiation level multiplies to a level where it can deteriorate the AVM. HOWEVER, there will be overflow of the radiation. Ordinarily, that is not a bad thing; it over flows and kills a bit of the tissue surrounding the AVM. But, with my case, the AVM is so close to the brain stem that if it over flows and any amount of radiation hits the brain stem, then it is irreparable damage and I will not be able to bounce back.
One other huge negative about the radiation treatment is that it will take up to 3 years to find out if it was successful, to the same token, it would take up to 3 years to find out if there was any complications. Since we would be dealing with complications involving the brainstem, a complication can effect ANY function in my body. 15 months after the procedure, I could theoretically wake up blind one day without any heads up. 6 months after the procedure, I could theoretically not be able to walk again. The difference between this time and last time will be that I will not be able to re-learn to walk... I will not be able to re-see. 
These are all huge factors to weigh in when deciding what to do next.
If I leave it alone, I fear everyday that it might hemorrhage. If I do radiation, I will fear everyday for 3 years that one day I might lose a basic function of my body. If I leave it alone, I will wonder for every headache I will ever have, if it is normal or if I should go to the hospital because its AVM related. If I do radiation, I will wait 3 years before I know if the AVM is gone or not. 
Dr. Berenstein said that he will be sending my case to 3 different specialist teams to decide what they believe is the best option for my situation. He is also going to have a conference about me with his fellow neurosurgeons. He will be getting back to me within the month with their verdict.

I'm not really sure how I hoped todays meeting would have gone, but it definitely did not go as I hoped.
I don't know which way is the lesser of two evils. I was hoping to be able to go to sleep tonight, sure of what the future of my AVM has in store for me.... but I am now more confused than when I woke up this morning.

Nobody every said it would be easy; they just promised it would be worth it. -Harvey Mackay

HAPPY 6 MONTH BRAINAVERSARY!!!!

There's a whole lot to update you on this month!
I have been working really hard and doing really well in physical therapy so now, my therapist and I are changing my schedule from 2 sessions a week to once a week!
I can now do just about everything. Except I still have a hard time walking in the dark, and maneuvering sharp turns.... 
I have been continuing to practice/train for a 5k.
But, now I took it to a whole new level. TAAF has an annual 5k in California, but nothing in NY. So, I have been in touch with them and together, myself and TAAF, are organizing a 5k at the end of October in NYC! (details to follow once they are in stone.) I will be arranging a fundraiser for the cause as well. Any advice, or help that anyone can offer on either organizing a 5k or ideas for a fundraiser, will be greatly appreciated.
Thanks so much to everyone for your continued support throughout this journey!! I couldn't do it without you!

“It always seems impossible until its done.” - Nelson Mandela

Happy 5 month brainaversary!!
WOW! can't believe it's been five months already! And at the same time I can't believe it's only been five months!
Here is an update on my recovery thus far and the future of my brain.
I continue to be in physical therapy twice a week, every week.
But, my therapy doesn't stop there.... I work at a summer camp so my therapy extends to the camp grounds. I am always walking, up and down hills, on rocky roads, bumpy grass patches, up and down stairs... you name it....
Every week there is still such a progression from the previous week.
The first week of camp I mastered walking up and down stairs, without holding onto the handrail! Second week, I mastered carrying a child and balancing on my own two feet! Last week, for the first time, while walking forward, holding 4 kids hands (that's progress in and of itself...) I turned around and looked behind me, continuing to walk straight. It's crazy that that seems like such a simple task, but that's something I have not been able to do for the last 5 months!
This week I had the biggest milestone, I think, since I got off the walker and then the cane.... This week for the first time in 5 months... I RAN!!!! It was like I was a perfectly healthy normal 22 year old, just running like I'm supposed to do. The feeling I got afterward was unexplainable!
Another big milestone for the week, I jumped this week, both of my feet... off the ground at the same time... and landing... both feet down at the same time.... without falling!! Jumping is still kinda tricky for me and I look like a three year old when I do, but hey, it's in the right direction.
Now, onto my brain's future. 30% of the AVM is still chillin in there... so that's an issue.... My parents, neurosurgeon and I all agreed that it is important that we wait for my full recovery before we go for more brain surgery. So, we will be discussing possible future brain surgeries in another 6 months from now.

"Whether you believe you can or believe you can't, you're probably right."

When I started Queens College in the fall of 2009, I dreamed of the day I would walk down my graduation aisle. On February 23rd, 2012, everything changed.
We didn't know the severity of my situation until a few days later. On February 28th, I was talking to the nurses and doctors about how I was graduating in May and couldn't wait to walk down the aisle without my walker or a cane. They didn't want to give me false hope, so they broke the news to me-- "May is really soon, if you will be able to walk down the aisle, you would be using a walker-- a cane at best... maybe you will be able to walk down your wedding aisle without any aids..." I answered, "May IS really soon, but I will walk down my graduation aisle, I promise."
Well, it is now May 31st and I am officially a college graduate! I woke up this morning, did my hair and make-up, put on my dress, cap, gown, and put on my HIGH HEEL shoes. I went to campus at 8 o'clock and stood on line for 1 hour before I began to walk down the aisle, by myself, no walker, no cane, no one holding me, just me-- almost as if I was back to normal.
After the school wide graduation we broke into our departmental graduations. For whatever reason, of the 11 graduates in my program, I was the only one to stay for this ceremony. They announced my department, and called my name and I climbed the 6 stairs to get onto the stage, walked across the stage, shook 3 peoples hands, posed for a picture and walked back down 6 stairs. It was a dream come true.
Most peoples families were crying because they were happy to see their loved ones achieve such a milestone in their lives. My family was crying because today, I achieved two milestones in my life. And I couldn't feel more blessed.

"We make a living by what we get, but we make a life by what we give."

I just wanted to thank every single person who has helped me raise money for The Aneurysm and AVM Foundation. I sent in a donation of $500 to TAAF and I could not have done it without each and everyone of you who donated! Through the fundraiser we were able to raise AVM awareness and help the foundation and I could not be more thankful.
Thank you from the bottom of my heart!

"The worst disability is a bad attitude." — Michael Muir

So, today is my two month brainaversary! 
I have improved so much in the last 2 months. Right after surgery I couldn't stand on my own, and now, two months later, I have graduated my walker and am bound to my cane for long distances and uneven surfaces. I am in out patient physical therapy at a center one hour a day twice a week and every day I improve tremendously. I can now walk around my apartment or around one floor of my house upstate without the cane or anything! I still have a hard time with stairs but they get easier with time. I also have a hard time balancing if the lights are off, and at the end of the day, or when I am tired. But I am working on all of these things... On a FANTASTIC note, I RODE MY BIKE ALL BY MYSELF AGAIN!!!!!! (slowly, and only around the col-de-sac in front of my house.... but it is still a HUGE step!)
At some point in May, I will be going for an MRI to decide on the next step, and I will update accordingly. 
On a different note, I have decided that when I am all better, I will run the NYC half marathon. I spoke with many of my friends and family about this as well as my physical therapists and they have all been very supportive. I started using the treadmill at 1.5 speed for 30 minutes as a start to my training, I have since moved up to 1.8 speed for 45 minutes. I was working and will continue to work with my physical therapist to build up all the muscles I need to be able to run this marathon. I hope to also run a 5K before December as a practice or prep for my half marathon which will *hopefully* be in March.... so keep your schedules free!! :-)

You never know how strong you are until being strong is the only choice you have!

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

Update from recovery

Yesterday, at 8am I had my embolization. The procedure was successful in that there were no complications, however, it was unsuccessful in that they were only able to seal up some of my AVM. They knocked it down but they didnt knock it out, it did shrink near my brain stem. I am in ICU recovering now. My side effects are dizziness and headaches. The doctors and nurses told me I am recovering well! So, thats good!! Meanwhile, they took out my IVs and I am sitting up on my own now. The doctors thought I could leave the ICU this afternoon but since I am dizzy and off-balance, they are moving me to a unit called step-down. Its basically a less intense ICU. Visiting is more lax there, so thats good. After 1 night there I will be reassessed and then either leave tomorow night or Sunday. So what's going to be with me? My doctor wants to give me a couple of months for my condition to stabilize and then we will discuss how to close off the rest. Thank you all for your support!! Thank you to everyone who donated towards TAAF to raise awareness and help find a diagnostic tool for early detection. I especially want to thank my sister Amy for all of her help in raising money for the cause!

Together, we can raise AVM awareness!!

AVMs are very rare, 1% of the population has an AVM somewhere in their body. 
By the age of 20, only about .1% has NOT bled-- that means that 99.9% of people with AVMs will hemorrhage by the age of 20! Every year, the odds of bleeding go up 3-4%.
Since my diagnosis I have discovered a fantastic website, www.TAAFonline.org . TAAF stands for The Aneurysm and AVM Foundation.
This organization is researching AVMs and aneurysms in order to find early detection, before they hemorrhage. This foundation also organizes an annual awareness walk.
I am currently selling these bracelets all proceeds will be donated to TAAF. (on one side they say: "RAISE AVM AWARENESS", the other side: "WWW.TAAFONLINE.ORG"-- band is black; font is teal.)
I am accepting any donations for TAAF, but for a donation of 5 dollars, or more, you will receive a bracelet.
Please contact me if you are interested in making a donation.
Thank you all for your support!

Confirmed date

Okay, so I confirmed with my doctor, February 23rd at 7am I will have my embolization procedure. If all goes as planned and the feeder is plugged, I will be in Roosevelt Hospital from the 23rd until that Sunday the 26th. I will then be recovering on bed rest in Monsey for a week.
On the other hand, if the embolization is not successful, I will be scheduled for brain surgery Friday morning, the 24th. In that case I will be in the hospital either until Tuesday or Wednesday, 28 or 29. And, I would still be recovering in Monsey.
Unlike with the angiogram, this time when I am in the hospital I am allowed to have visitors. I don't know the exact info on where I will be in the hospital, but if you are interested in coming to keep me company, please text or message me for the info.

Q&A

I am by no means an expert on this topic, but I have learned a lot about it. So, if you have any questions, feel free to text, facebook or email me. I am open to any questions. :-)

What are the risks?

I discussed the risks of all the options with all of my doctors, the risks for the conservative option and radiation option are clear cut and are therefore not an option for me. The risks of the brain surgery are minimal. Obviously there’s always a risk, but Dr. Ghatan said that he does 1-2 brain surgeries every day (not necessarily for AVMs, but still brain surgeries…) and he has never seen any long term permanent problems. However, he did say that there is a strong likelihood that I will be dizzy and not be able to focus my eyes for a few weeks, but that will go away.
Risks for the embolization are even more minimal. There is a 1-2% chance of risk with this option. But it is most comforting to know that Dr. Berenstein, the doctor performing this procedure, is the doctor who invented this treatment, so if anyone can do it right, it’s him.   
Both Dr. Berenstein and Dr. Ghatan were very impressed and surprised that we found my AVM before anything catastrophic happened. They said that every year I live with an AVM I have an increased risk of 4% of hemorrhaging. Understanding that I am 21 years old, I am up to an 84% chance of bleeding. So, it seems the risks of not getting it done outweigh the risk of having it done.

What's recovery like?

If all I need is embolization, the glue, then I will be in the hospital for 3 days and then I will be on bed rest for a week and then slowly I’ll be back to normal.
However, if I need the surgery, then I will be in the hospital for 5 days (crazy how it’s such a short time!) and then bed rest for 2 weeks and take it easy for 2 more weeks. And then I will be fine forever.

So, what's going to be with me?

After meeting with Dr. Berenstein, a world famous endovascular neurological surgeon, he can say with 60-70% certainty that he can plug up my feeder with one shot and that would be the only treatment I would need. However, he then sent me to speak with Dr. Ghatan, the neurosurgeon, to discuss what would happen if I fall in the 30-40% where the glue doesn’t work.
Dr. Ghatan explained to me that the radiation therapy is a non-option for me because of the location of my AVM. They are afraid that if they do the radiation, some radiation might (will) be absorbed by my brain stem, and that would cause permanent damage. He also said that the option of watching it is not an option for me for two reasons. Firstly, I am young and he doesn’t want me walking around with a ticking time bomb in my brain, and secondly, usually that option is used for people who have already hemorrhaged.
Dr. Berenstein, Dr. Ghatan, Dr. Schick and all the neurosurgeons in Roosevelt hospital discussed my case and all agreed that Dr. Berenstein is going to schedule me for the embolization and then, if I fall in the 30-40%, then the next day, Dr. Ghatan will come in and perform brain surgery to remove it completely.
I wouldn’t know about the surgery until after Dr. Berenstein does the embolization, then he will perform an angiogram and then he will know what the next step is and we will discuss it when I wake up.

What are the treatments?

There are 4 known treatments for an AVM. First, there’s the option of brain surgery, which is self explanatory. For this option they would go in and remove the entire tangle. The second option is radiation therapy, where they use a laser and kill off the AVM that way. A third option is something called embolization. Embolization is a minimally invasive procedure where they would go through my thigh and get into my arteries and follow the blood through my heart and to my brain where they would inject crazy glue right onto the feeder (the artery (or arteries) which are pumping the blood into the AVM.) the glue would hopefully plug the feeder and the AVM would basically die and disappear over the next 3 years with no repercussions. The fourth option is the conservative option, where we do nothing and just monitor the AVM.