t - 9 months (where t is surgery day):
I go snowboarding in the mountains of Santiago. “Luckily” my courage exceeds my skills and I fall and hit my head. As we travel down the mountain late in the day, I feel dizzy and have memory loss so off to the hospital. The neurologist do the usual test w/ basic questions and although everything looks find he decides to do a CT Scan. It takes a while for him to come back and when he finally shows up he says: "Your brain has no damages from your accident today but I do have some questions for you: Did you ever suffer from headaches? Seizures? Balance problems? “No, never had those kind of issues”, I respond. “Well, the scanning shows you have a AVM in your brain…” I am completely shocked, I have never heard about a malformation in the brain, but it sounds serious. “But doctor, is this serious?”, I ask. "It can be - so we want you to stay with us for a few days to do some more exams"
So I am hospitalized the same evening and over the next days they do angiogram and MRI Scan. Finally, 3 neurologists enter my room and tells me (one of them holds to his head with his hands, making it very dramatic) that I have AVM in my brain and they would recommend embo and surgery but given size and location it is not without risks.They give me the names of surgeons in Europe and US and recommend that I take my time to make a decision and find a good placed if I opt for treatment. At this point I am really scared, thiknking my life has come to and end. So I lay there in the hospital thinking about what will happen. Having limited knowledge, I assume the worst but over night i do get more positive thinking “surgeons are good nowadays. Brain surgery can be survivved” After 4 days I am released from the hospital and start to investigate what an AVM is. I start to be more positive and I also contact Dr. Neil Martin of UCLA to get and appointment.
t-8 months:
I go for 1w vaccation to visit friends and family in Denmark but also to see a Danish neurologist. He also recommends embo + surgery and explains well the risks and benefits. At this point have accepted I have the AVM; that I neeed a surgery but I am also raher positive about the outcome. Afterall, I have been lucky in my life and expect it to continue…
t-8 months to t-2 months:
I make several contacts with Neil Martin’s assistant. I have heard HE IS THE MAN so that is my preferred option. However, the processs is very slow and nothing really happens. I start looking for other options and learn that Robert Spetzler in Phoenix, Arizona, US actually should be better than Martin. Right after New Year 2009/10 I send reports and images to Spetzler for review and only 10 days letter there is a reply. It basically confirms that my AVM is treatable w embo + surgery but I can also choose to observe as I’ve had no symptoms. However, the decision is easy: Treatment has 10% risk (albeit those 10 includes death, paralisis, blindness); doing nthing carries ~4% risk per year of a bleed which can have serious consequences. So I schedule an appointment: March 17 for embo and March 19 for surgery w Spetzler and his team.
t-5 days:
I leave my home to fly to Phoenix - now it starts to become tough. Will I be back? In what condition?
t-4 days:
I arrive in Phoenix and meet up with my parents who flew over from Denmark. We go for a long walk and good talks.
t-3 days:
I go to Barrow’s in the afternoon for blood samples and too see the doctors. They do not hesitate to explain the risks and I sign the first consent forms. After the meeting w the doctors, I spend a few hours alone without my parents. Time is running, I am becoming more nervous. Tomorrow is embo-day, I go for a Starbucks coffee and enjoy the taste. I try to think about the 90 pct chance of success and not the 10% risk of failure in the embo and surgery the next days. I vision myself leaving the hospital early next week in perfect shape. In the evening I have a nice dinner w my parents. Great food; great company but not much to celebrate - but a lot to fear. And/I we do. I return to my hotel to shower off w the disinfecting soap they gave me today at the hosptial
t-2 days (embo day):
The bell rings at 4:40 am, don’t feel like getting out of bed. But I have no choice, get up, shower w the soap again and then put on the clothes I like a lot, check-out and head of St Joe’s Hospital/Barrow’s Neurologogical Institute. I meet my parents there and we go to pre-ops. I change clothes, get IVs and then Dr. Cameron MacDougal’s resident how up together w the anesticaologist. He tells me the risks again (“the total risk of death, paralisis, blindness, kidney problems and cancer is around 5%. Do you want to proceed”?). I am ready, my mother asks the Dr to take good care of me and he promisises to do so. My parents are crying and so am I as they roll me off into the operating room. I get in there, change bed and see 2 ex-pets on the floor. I know they will take care of me. The anasteciaologist give a shut and tell me it might take 5-10 minutes to work.
"Andreas, where are you? Stick your toungue out, give me a big smile, squeeze my hands, push them, wiggle your toes, push your feet up. You are doing great, embo is over, they got most of it sealed off. You are in the wake-up area, we will take you to ICU now. Want to see your parents now?"
My parents join me as I am rolled-off to ICU. I can hardly open my eyes; I am thursty but very happy. Step-1 went well.
t-1:
Day of watching TV, reading, eating, waiting and being nervous. Spetzler comes in and w his powerful voice he sais "See you tomorrow,young man"
t-0 (March 19, 2010)
At 09:00 am I am taken from ICU to the surgical neurology. Same as before the embo, they tell me all the risks and ask if I want to proceed. Of we go, now it is time.I get into the operating theater they start to prepare me. Says my blood pressure is a bit high and conclude that I am probably nervous…
“Andreas, where are you? Stick your toungue out, give me a big smile,
squeeze my hands, push them, wiggle your toes, push your feet up. You
are doing great, surgery is over. You are
in the wake-up area, we will take you to ICU now”
It is around 9 pm as I get to ICU. Surgery was 10 hours. I ask if they got rid of all of the AVM, according to Spetzler they did but need to do CT and Angiogram next morgning to confim it.
I sleep pretty well that nigh, happy and full of drugs.
t+1:
Go for angio and CT Scan around 4 am.
At 8 am nurse Lisa comes in and says “Andreas, we need to talk. Scanning show what AVM is removed which is the good news but your brain swelling as there are liquids that your brain is not draining so we want to put a drain in for some days. The worst that can happen is death or stroke but it is uncommon. We realy think you need the drain” So I sign the consent form and Neuroscientist Tony prepares me for the drain. Doctor comes in an drills a hole in my scalp and puts in the drain.Not that painful but emotionally tough. I dont care about the drain itself, what worries me is the swelling.
Headaches starts, but hurts from 4 days in bed and I am tired of all the wires and drains attached to me. But the is lots of support from all the Staff at BNI. They are fanastic and so are my parents.
t+2:
Bad news, brain still not draining well. Good news: We have passed 24 hrs post surgery, my vitals are stable and I pass the neurological tests each our.
t+3:
Drainage is showing progess, I am awake most of the day (and nigh).
t+4:
Start of rehab. I have problems walking; my vision is blured and double and I dont have a lot of strength. They tell me it is all normal, but this surgery was much tougher on me than I expected. But so happy the AVM is gone, I am happy about the exchange rate
t+5 (March 24):
I leave the hopsital- very happy. Already gaining more strentgth, walk better but vision still bad
t+6 (today)
Go for PT and for an eyespecialist. PT goes very well only some balance problems that can be fixed, eye specialist tells me he believes vision problems are temporary, I will see him in a week and see if vision therapy is needed.
Now it is is time for pizza w my parents. I am very happy, the last week has been the toughest in my life but seems like outcome will be good 
Andreas, Please keep all of us posted on your progress. You’re in my prayers and I wish you the best. I have an appointment tomorrow morning with my neuro to tell me when theyre going to hopefully schedule the start of the process for my radiation treatment.
All the best to you
Jessica
Andreas
Thank you for your story,hope everything is going well.
Gordon
Hi Andreas,
It sounds like your surgery went well despite some initial challenges. The first few weeks are the toughest (at least that was my experience). Things will get easier and you will get stronger over the weeks that come. Excellent that the Barrow still does great work (tomorrow will be 15 years since my last surgery there). Mend well!
Very best,
Alexis
Hello Andreas
Thank you for sharing your story with us I needed to hear your story as my daughter will be having her surgery soon, it brings me great pleasure to hear that the surgery went well, and that your recovery has started, Please keep us updated on your recoevry, hope you enjoyed your pizza, Get well soon
Mario Ontiveros
Time for update:
t+1 week to t+2 weeks:
Go to daily rehab (physio + occupational therapy): First day is bad, cannot balance and walk well and have double vision. After the weekend things are much better, vision is not double just blurred and I walk quite well again.
t+2 weeks:
I fly back home to Santiago de Chile. No problem flying. My vision is still not perfect, i have to take 1 pain killer per day and i fatigue easily. But man, I feel lucky and fortunate, it is 2 weeks after surgery and except for not working life is normal. I drove my car today, went to the supermarket.
t+18 days:
Worked 2 days I was extremely tired in the evening but other good news is that I did not take any pain killers during these 2 days Vision still not perfect and has stopped improving. Hopefully it will get better over the next months, if not I can manage and life with this. I feel extremely grateful to family, Barrow’s and Spetzler and whoever is holding his hand over me.
So…it is about 10 weeks since surgery and things are going well:
On the positive side:
- No headaches
- Working full time (+60 hrs per week, quite intense work) and flying a lot
- Fatigue almost gone
- Vision is perfect
- Can drink alcohol - with moderation (okay doctor says I cannot, but I do and it is okay)
- Met a very sweet girl
On the negative side:
- at times, I get dizzy and can loose balance
- hair is growing quite strange in some places, but it is a small price to pay
I will be forever grateful to:
- Doctor Spetzler and Doctor McDougall at BNI - the guys who cured me + their team. I think no word or no action covers my gratefulness to you. Also, to the staff at Barrow’s who showed so much CARE when things got tough. You were true role models
- My mother and father who was there to take care and SUPPORT me, I know it was not easy
- Friends and colleagues for the encouragement throughout the process
Forgot…some key learnings that others might benefit from:
- doing the surgery was much tougher than I had expected…I thought I would be 100% recovered after 5 days…I was not…but again, I shouldn’t complain
- Stay positive…it is not as bad as it sounds
- If you can, go to Barrow’s
Today it is exactly a year ago my AVM was incidently diagnosed. I am now AVM free, I would say almost back to normal after surgey in March. When I am tired I get kind of dizzy but it is nothing that prevents me from leading the same life as I did before the surgery.
bbbbHello Andreas
Thank you again for your update, I look forward to hearing about your recovery, I am so glasd to hear that you nare doing so well, My daughter Lacey had her surgery oon April 27 3 monthsi ago, she has no complications to tdate, She has some hair lose but thinks it’s because of her tyhroid medication, We took her kids to Disneyland on Sunday she wanted to go on some roller coaster but we asked her not to and she complied with our request, Congratulations on 1 year of recovery, Have A Great day
Mario,
Great news from your side!!! The fact that she wants to go on a rollercoaster is a good sign! On the hairloss: hopefully it is temporary - I also struggled with that until a few weeks ago (basically on part of my head, hair was growing slower and less dense) but now it is (almost) back to normal. Best of “luck” w the rest of the recovery.
A
Hey read it loved your story, u sound a lot like me, let’s do it and get rid of it, when u take a chance of it bleeding again and what might happen, u go ahead with the surgery, I learned to have faith in God and and Let god let my doc’s. What a good story for all of us. Thanks so Much.
Quick update: I am 1y and 5 days post the surgery. Overall, things have been greate. Last weekend I did a marathon and I have been so lucky and blessed that my life is 99% back too normal. There are no day-to-day things I am not able to do. What I do have is a bit of vision disturbance and balance problems but it is all minor and does not affect my ability to live a normal life
Good luck to anyone out there that still have there AVM
Hi Andreas. Congratulations on your recovery. We have a new sub-group on here...
http://www.avmsurvivors.org/group/s
It's called Success Stories. At 99% normal...I'd say you better join that group!
Hey Andreas- reading your story is pretty inspiring- your whole attitude and realtively speedy recovery is some psoitive reinforcement.
My husband goes in for a craniotomy at Hopkins this coming Wednesday.