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.