Friday, March 12, 2010

Surgery Follow-up and 3 years...

Last Wednesday, March 3, I had my surgery follow-up appointment with Dr. Bray. It went well. He pretty much asked me how I felt and if I had noticed any changes since the surgery. I told him, yes, that I had seen some small changes. Nothing super groundbreaking, but then again, any small change for a spinal cord injury is a big change. The changes include:
  • Core strength/muscles that I did not have before. I can now work my lower abs. Hopefully I'll have a Tayler Lautner six-pack by summer :)
  • Less invasive tone/spasms in my legs. They "turn-off" a lot easier, seeing the most impact in my gait-training therapy.
  • More movement/initiation through some of my leg muscles, including my gluts and hamstrings.
  • Riding the stationary bike a lot more smoothly, with less cheating and less effort.
  • Some more toe wiggling, mainly on my right foot.
  • Traces of improved sensation (sharpness/pain/temperature) throughout my legs.
It's a little difficult to say though that A caused B. I did not do an extensive benchmark prior to the surgery, but listening to my body and observing therapy, I firmly believe that the above are new since the surgery on January 11.

When I first met with Dr. Bray and he ran his MRI scan technique, there was nothing clearly illustrating the AVM. He saw irregular traces on the MRI, but could not definitively say that these were abnormal and needed to be removed. They very well could have been erroneous marks or images, which are common on MRI's. He gave me the option to do the surgery, and I elected to do it.

After the surgery, he said that the AVM was quite large, actually, and he has improved the MRI technique to hopefully capture this in the future. I asked him what would have happened if I did not have the surgery. Since the blood was being routed incorrectly, it's very possible that the function that I did have could have deteriorated over time or with other movements. THIS IS EPIC.

What this means is that those with Surfer's Myelopathy, whether they have gotten better or not, most likely have an AVM, which caused the paralysis. If the AVM is not removed, the condition may worsen. Dr. Bray has relayed to me and the Surfer's Myelopathy Foundation that he encourages all those diagnosed with Surfer's Myelopathy to get the scan from him. He is not in this to make money, but to help others -- trust me. Once he's able to see more patients with Surfer's Myelopathy, then he can more conclusively make a diagnosis and possibly create a protocol for treatment.

Surfer's Myelopathy may be a subset of a larger pool of people with AVM's that are flared up by a specific activity. Dr. Bray is hot on the trail to help many, many people. Thank you Dr. Bray for your enthusiasm and I pray that God give you the strength and clues necessary.

Three years ago today, I woke up walking. Three years ago today, I went to sleep paralyzed. In between the walking and paralysis, I did nothing wrong, except try surfing like so many others. Nothing abnormal happened during my 90-minute session, except that I was good at surfing :), and my back started hurting. I did not get hit by a wave, fall off the board abnormally, etc.

Today, I am trying my best to recover and do what I did for 8 of every 9 days of my life so far -- walk. However, as my mom reminded me yesterday, I am so blessed in so many ways, from the love and support of the people around me, to the roof over my head and a good job. As my wife reminded me today, we are so lucky to have each other to go through the good times, and get through the bad. This episode actually solidified our relationship and brought us closer than we ever had been.

I went to a co-worker's memorial service this week. Brett Leckie and Tom Thate, may you rest in peace. The love and support shown by their families, friends, co-workers and other loved ones was amazing. It made me think that the episode that I went through really brought the best out of those I know. Everyone rallied behind me and the good thoughts and prayers have really helped me through this. I am so blessed to see and feel that support and am forever grateful.

I would love to call each of you out by name and thank you, as you have given me strength, courage and support to get through this. But right now, I'm going to only call out a few people that have been instrumental in the past 3 years, helping me improve and helping me acclimate to a life forever changed:
Ivette: You have been an angel to me since day 1, going without a bed for 2 months while you slept in an uncomfortable chair next to my hospital bed every night. Thank you for sharing the great days and helping me through the hard ones, with a love and compassion that only a soul-mate can have.
Mom and Dad: You always offer your love and support in any way, and I know you would do anything for me, from driving down to Carlsbad multiple times a week to looking up different ways to "cure" me. I know I always have you here for me and your selflessness has been amazing.
Mom and Dad Flores: Your love for your new son, and even before I was officially your "other" son, has been unconditional. Your generosity and support have truly been one of the cornerstones to how I continue my therapy and strive for improvements.
Gerardo: Your support while I was in the hospital and as I transitioned back to "normal" life working again has been unbelievable. I will never forget you summitting Mount Everest, calling me on your way down at Camp 2 from your GPS phone, saying, "I made it. I made it for you, man."

Again, from the bottom of my heart, thank you to all my friends, family, co-workers and everyone for being in my life and being my fuel to fight this fight and carry this cross.

Because of all of you, because of Dr. Bray, because of the thoughts and prayers, I envision a day where nobody will have to go through this random pain and suffering. The Surfer's Myelopathy Foundation has already started the campaign, sending posters, brochures and other information to surf schools in California and Hawaii. Hopefully this will start to build awareness. The point is not to discourage surfing, but simply to encourage safe surfing and listen to your body.

I selfishly hope that three years will be the last anniversary of this injury that I will have to endure in a chair. I hope and pray that I will be up by year four. If that is the case, then that very clearly illustrates that the procedure Dr. Bray performed may not only help those who are hurt in the future, but can very possibly, very tangibly help those who currently suffer from SM. However, if I am not up yet by year four, I will still have my faith, still have my strength, thanks to the support of those around me -- all of those who have showed me Jesus staring right back at me and walking with me as I roll with this burden.

Last picture right before surfing...

Last walking video, the day before we went surfing...

Monday, March 1, 2010

Next Step Fitness and Pray for Chile...

I've been meaning to take a video of my therapy at Next Step Fitness in Lawndale, CA and post it. Here it is from my session today:

A typical session comprises of stretching/getting up in the harness for 30 minutes, 30 minutes on the treadmill of 5-minute intervals with brief breaks in between and trainers physically walking me (as seen in the video), 30 minutes of exercise training (over ground strengthening) and 30 minutes cardio. For more information on Next Step Fitness, see:

While at Next Step Fitness today, I was wearing a shirt that said
"España" on the front, which my sister, Jen, made with a listing of 15 bars in Long Beach that we used for a pub crawl when she was moving there in 2007 to get her MBA via a Fulbright Scholarship.

While I was doing cardio in a machine called the "Nu-Step" (which moves your arms and legs and you can vary the resistance), I was thinking that instead of the
España shirt, I should have worn a shirt representing Chile, showing solidarity.

For those of you who don't know, I lived in Santiago, Chile during our summer (their winter) of 2003 for an internship with a communications consulting firm called "Tironi Asociados" ( I was so very fortunate to meet and live with Eugenio Tironi and his beautiful family, Andrea, Pedro, Martin, Tomas and Elisa. We really bonded and cared for each other a lot. I was also fortunate to become close to Eugenio's extended family, namely Pablo, Carlos, Constanza, Nicolas, Justin and many more. They treated me like family for the few months that I was there and for that I will be forever grateful.

While doing the internship, I was allowed the special opportunity to participate in the Latin American community service project called, "Un techo para mi
país" (A roof for my country), but specifically in Chile, it was called, "Un techo para Chile" (A roof for Chile). We went to a city called Lota and manually constructed houses from materials that were purchased via donations. There were about 100 volunteers between the ages of about 18 and 28 who went for 10 days for this effort. In our smaller group of about 10 people, we were able to build 4 of these houses in the 10 days! That means 4 houses for people who did not have stable shelter before!

View Larger Map
A map of the distance between Lota, Concepcion (earthquake epicenter) and Santiago.

I left with a sense of accomplishment, grace and humility as I learned about some of the poorer regions of Chile.

Today it dawned on me... I built houses in Lota (not professional, but better than nothing). The earthquake was in Concepcion, only 25 miles from Lota...

My Tironi family and friends are safe in Santiago. However, I don't know the fate of the houses or people in Lota, and most likely, given the proximity of Lota to the epicenter, it is nearly impossible that those houses we built 7 years ago were able to withstand the earthquake.

Please, please, please pray for those in Chile (and Haiti). It is so hard for us to imagine what it is like in these areas at these times of need because it is so hard to connect with them and the areas while being here in the US.

But today, it hit me harder knowing what I had come to realize. We should feel connected to these people because they are honest, loving, playful and hopeful people that had their world devastated, many with no more roof over their heads. Maybe there's a reason why you're reading this blog right now, because maybe I'm your connection to feel to these people. The news everyday can be so daunting, depressing and repetitive that we become numb to some of the true impacts of the stories. This stuff is real. There is a lot of work to be done to repair the damage, but for those of us who have given money or supplies or whatever and don't know other ways to help... just pray.

Believe in the power of prayer. It has worked for me. Those who tell me that I've been strong or encouraging in my recovery process, I could not have done it without the support of those around me and the support of the Man above.

Let's bond together and make prayer work for those in Chile.

I don't have many pictures on me right now of my life in Chile (those are at my parents' house), but I was able to dig up a few that I had scanned a few years ago.

Top: A student studying in Chile (Brandon Possin), Andrea Tironi, Eugenio Tironi and me.
Bottom: Pablo Tironi at our skiing/snowboarding trip in July 2003.

Top: Me snowboarding black diamond and making my own paths on the mountain!
Bottom: Pablo Tironi, doing his best impression of a pro skier!

Top: Me and another volunteer with a bunch of the local kids in Lota. It was raining off and on, so we wore rain gear.
Bottom: The first happy family with a new house!

Top: The house almost complete.
Bottom: Inside a completed house with the family and the volunteers.

2 more happy families in Lota, Chile with new houses!

Top: Rottweiler puppies that they were giving me and I was so tempted to take them home!
Bottom: One of the volunteers, and I think he actually did take a puppy home!

Top: One of the equipment trucks with the logo.
Bottom: Completely randomly ran into a Fisher Hall dorm-mate (Todd White) who did the project as well. I had no idea that he was even in Chile, and we saw each other in Lota!!!