After meeting with my neurologist, talking over with my family and friends and meeting with a woman who had used Dr. Spetzler for brain surgery, I decided to book my appointment for a consultation in Arizona. The receptionist told me that typically out of towners book everything for one trip-- consultation, angiogram, and surgery. Okay, here we go! I booked everything for one trip. We were trying to schedule it where it would fit into the surgeon schedule, the endovascular surgeons schedule for the angiogram, my schedule, and my parents schedule. It was just as difficult to find a date as it seems it would have been.
Finally, yesterday we decided that April 21st I will fly out to Arizona with my parents and then first thing in the morning on April 22nd I will have my pre-surgery physical, and later in the afternoon I will have a consultation with the surgeons. First thing the next morning, April 23rd I will have my pre-surgical angiogram-- taking current pictures of the AVM so they know what they are going to cut out when its time for surgery. April 24th, I will have a day off-- go site seeing, relax, maybe a spa day? Then April 25th is the big one. I go in in the morning for surgery. It will be around 8 hours long and I will stay in the hospital for 3-4 days. I will fly back home Monday April 29th, and 10 days after surgery get my staples removed at a hospital in the city. I will be out of commission for 4-6 weeks.
I am a bit nervous about the surgery because it is a huge surgery, but I am more nervous about not having the surgery and leaving a ticking time bomb in my brain.
Dr. Spetzler is a great surgeon, he is very experienced and I had the privilege to speak with a few of his patients. I feel confident that he can do the job.
Friday, March 8, 2013
Saturday, February 23, 2013
HAPPY ONE YEAR BRAINAVERSARY!!!!!!
WOA!! ONE YEAR!!!!!
Weird to think about how much has happened in this year. But I want to thank my friends who helped me along, my unbelievable physical therapists who helped me recover and my family who have been so supportive this year!!!!!
I wish I could say, after the crazy year I had, that I'm done, cured, no more AVM! But, that's not the case.
The surgery knocked my AVM from two feeders to one, and from 2.5 cm down to 1.5 cm. In the last few months I started seeing doctors again to figure out how to get rid of the residual AVM. All the doctors I spoke with at Roosevelt were telling me that my best shot was with gamma knife with Dr. Lundsford in Pittsburg. I spoke with him and basically he told me that I have to rush to Pittsburg to get gamma knife and I shouldn't have waited this long. He said that I have 10% chance of something going wrong-- that's a gigantic percent!! But, he tried to lighten it by saying, "well, that 10% is smaller than your cumulative percent of bleeding out and dying." While I appreciated his input, his bluntness was a bit much.
In the meanwhile, we also sent my case to this other neurosurgeon in Arizona, Dr. Spetzler. He is super famous and saved Brett Michaels' life after the Tonys set fell on his face; he invented these techniques to stop patients hearts during surgery to avoid AVM hemorrhages during the surgery. He has performed well over 5000 procedures and is one of the founding fathers of the scale universally used to rate and measure an AVM-- The Spetzler Martin Scale.
This week, he reviewed my case and called my neurologist to tell him I need to have a craniotomy (shave my hair, crack open my skull, hands on brain, surgery) sooner than later and he feels confident to perform it.... in Arizona.
This news came as a shock to me and my family because we thought that was not an option for me.
Now, it seems its the only option.
This Tuesday I am meeting with my neurologist to discuss my questions and concerns about having a craniotomy. The risks are what would be expected-- paralysis, blindness, the loss of ability to do basically anything, or worst case, death.
After having a few days to process this and research the doctor and talk a bit with my family, I think I feel confident with Dr. Spetzler's experience and knowledge to let him perform the craniotomy on me. I still do have more questions and am still quite nervous about it, but I will be talking to my neurologist this week and hopefully have a better idea and feel 100% confident with my decision.
As per usual, I will keep yall updated as I get more info this week.
Thank you again for such a supportive year!! I couldn't have done it without YOU!
Weird to think about how much has happened in this year. But I want to thank my friends who helped me along, my unbelievable physical therapists who helped me recover and my family who have been so supportive this year!!!!!
I wish I could say, after the crazy year I had, that I'm done, cured, no more AVM! But, that's not the case.
The surgery knocked my AVM from two feeders to one, and from 2.5 cm down to 1.5 cm. In the last few months I started seeing doctors again to figure out how to get rid of the residual AVM. All the doctors I spoke with at Roosevelt were telling me that my best shot was with gamma knife with Dr. Lundsford in Pittsburg. I spoke with him and basically he told me that I have to rush to Pittsburg to get gamma knife and I shouldn't have waited this long. He said that I have 10% chance of something going wrong-- that's a gigantic percent!! But, he tried to lighten it by saying, "well, that 10% is smaller than your cumulative percent of bleeding out and dying." While I appreciated his input, his bluntness was a bit much.
In the meanwhile, we also sent my case to this other neurosurgeon in Arizona, Dr. Spetzler. He is super famous and saved Brett Michaels' life after the Tonys set fell on his face; he invented these techniques to stop patients hearts during surgery to avoid AVM hemorrhages during the surgery. He has performed well over 5000 procedures and is one of the founding fathers of the scale universally used to rate and measure an AVM-- The Spetzler Martin Scale.
This week, he reviewed my case and called my neurologist to tell him I need to have a craniotomy (shave my hair, crack open my skull, hands on brain, surgery) sooner than later and he feels confident to perform it.... in Arizona.
This news came as a shock to me and my family because we thought that was not an option for me.
Now, it seems its the only option.
This Tuesday I am meeting with my neurologist to discuss my questions and concerns about having a craniotomy. The risks are what would be expected-- paralysis, blindness, the loss of ability to do basically anything, or worst case, death.
After having a few days to process this and research the doctor and talk a bit with my family, I think I feel confident with Dr. Spetzler's experience and knowledge to let him perform the craniotomy on me. I still do have more questions and am still quite nervous about it, but I will be talking to my neurologist this week and hopefully have a better idea and feel 100% confident with my decision.
As per usual, I will keep yall updated as I get more info this week.
Thank you again for such a supportive year!! I couldn't have done it without YOU!
Saturday, December 8, 2012
“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?
Tuesday, October 23, 2012
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.
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.
Thursday, August 23, 2012
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!
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!
Monday, July 23, 2012
“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.
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.
Thursday, May 31, 2012
"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 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.
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