Surgery Follow-up and 3 years...

VISIT WITH DR. BRAY
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.


3 YEARS
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...

Next Step Fitness and Pray for Chile...

NEXT STEP FITNESS
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: http://www.nextstepfitness.org.

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.


MY CHILEAN LIFE
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" (http://www.tironiasociados.com). 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!!!

Good week of therapy!

I've been busy and have been able to hit up all my favorite places: Next Step Fitness, Precision Rehab, Project Walk (among other things: HBO and reflexology). I see signs of improvement since the surgery and am anxious to find out what Dr Bray has to say at my follow-up appointment on Wednesday.

Slowly but surely, but not yet there...

Thanks for all of the support and prayers over the past 5.5 weeks! My back feels a lot better. Over the past several weeks, I have done 17 sessions of HBO (hyperbaric oxygen chamber treatment) and reflexology/leg massage to help with the circulation. A special thanks to those who have been helping me directly, including my parents for driving me all around when I didn't have the strength to drive/bring the chair in my car alone, Kennett for helping me with periodic treatments, Ivette for her patience and love, Judy for calling and having the kids help cheer me on, James, my mom and all the Hawaiian friends/relatives (and Jen and her Colombian friends) who have helped with the coffee leaves that we've been trying, all those who have donated to help with my medical expenses and mis suegros who have shown me nothing but love since the day I met them and everyone else who I am not calling out right now.

As I'm feeling a lot better (but not yet 100%), I have started to go to therapy again since I am more mobile. Today was a special day for a few reasons. My sister, Jen, is back in town from Colombia and she came to therapy with me today at Project Walk in Carlsbad, CA (more than 100 miles from my place in Pasadena). Today may have been my best day at therapy. I felt like I had great initiation and follow through, my legs had a lot of strength and I am actually sore right now!

I have seen some small improvements since the surgery, although it is difficult to tell if these are strictly from the surgery as there was no formal benchmark prior to the surgery. Regardless, I can now more easily contract my toes on my right foot, I have a little better sensation in my back, my core strength is a little better, I feel like during a few of the stretches/therapy sessions, I have been able to connect more and even initiate more and I have better sensations (but still impaired) of hot/cold temperatures on my legs.

I'm fighting hard to get better and will try to update this blog with more updates as they come and pictures, etc. Thanks again for your support and love.

Here is a video of me riding the stationary bike today at Project Walk. Pretty cool for a paralyzed guy, right?!

An Epic Day for Surfer’s Myelopathy – 1-11-10

January 14, 2010

Most important days in my life so far:

January 6, 1983 – I was born

March 12, 2007 – I was paralyzed by a non-traumatic, freak occurrence while surfing

September 26, 2009 – I was married to an amazingly wonderful woman, Ivette

January 11, 2010 – I may have been vindicated from paralysis, and the solution to help so many others may have been found

The promising new scenario

Assuming that there is no way to predetermine those who are susceptible to Surfer’s Myelopathy, a new promising, scenario was discovered on Monday, January 11, 2010.

Imagine on my fateful day, March 12, 2007, there had been a difference in the course of events. As before, I went surfing for the first time while in Hawaii. I did not fall off the board, get hit by a wave or suffer any other type of trauma. However, over the course of 7 hours, I slowly lost feeling and movement in my legs. At that time, my diagnosis was Surfer’s Myelopathy.

Now this is where the story deviates. On March 12, 2007, the true story is that I was stabilized and kept in the hospital, with no other treatment other than normal rehabilitation and therapy. However, based on what Dr. Robert Bray just discovered, imagine a special MRI would have been taken that identified the malformation in my blood vessels, the malformation was removed and in a matter of days, the symptoms were completely reversed, and I was up and walking again. Now imagine, 3 years post-injury, this is still a possibility; there is still hope.

Connecting with DISC Sports and Spine Center

It started in March 2009 when Dr. Robert Bray’s office at DISC Sports and Spine Center (http://www.discmdgroup.com) contacted Ivette, the president of the non-profit organization, Surfer’s Myelopathy Foundation (http://www.smawareness.org). At that time, Dr. Bray had identified patients with decreased sensation/mobility over a short period of time (a few weeks/months) and used a special MRI sequencing to identify these abnormalities. After Dr. Bray removed the abnormalities, the symptoms were reversed and the patients recovered. Ivette contacted the Surfer’s Myelopathy cases in southern California to participate in this new MRI sequencing to see if the same abnormalities would be identified.

Running some Tests

I volunteered, went in for the scan and waited for the results. Upon seeing the results, Dr. Bray did identify abnormalities, but these appeared different than ones he saw before. They ran some other tests to see if there was indeed a blockage in the spine that caused this injury. However, those tests were negative. After that, he concluded that he could go in and explore the apparent abnormality if I would consent.

He explained that going into the spine could provide clues to what caused Surfer’s Myelopathy and possibly prevent future complications that might be present with the presence of an abnormality. But he was straightforward that even if he went in and fixed the abnormality, the benefit for me would most likely be slim to none.

Surgery on Monday

I consented to have the surgery done to remove any abnormalities that might be there, but possibly gain clues to the cause of Surfer’s Myelopathy to help others. I underwent a 3-hour surgery on Monday, January 11, 2010. After coming out of the anesthesia, Dr. Bray shared the news. The abnormality was definitely present in the form of an abnormal vein that even had a pulse. This was such a blaring abnormality that he was surprised that this did not show up on any of the scans that had been performed. Based on what he found, in combination with a case of Surfer’s Myelopathy he had seen in the past, he was almost certain of the cause of the injury – a malformation of blood vessels in the back that redirects the blood flow.

He explained that even though he had previously said that the benefits for me would most likely be slim to none, based on what he saw during the surgery, he would be very interested to monitor me over the next few months. If there was blood still circulating to the critical tissues in the spinal cord, now with the flow corrected, it’s possible that the paralysis may be reversed! However, if when the injury happened, there was a true stroke or lack of blood to the tissue and the tissue died, the prospects of this were smaller. However, only time can tell.

I asked Dr. Bray why the angiogram I had at UCLA in July 2007 did not identify the AVM (Arteriovenous Malformation) that he removed, and he said simply because those procedures generally do not look at the blood vessels on the sides of the spine, but only evaluate the flow of blood through the cord.

Implications for Surfer’s Myelopathy

Dr. Bray wants to see a few more cases of Surfer’s Myelopathy in order to firmly conclude, but preliminarily, this is VERY EXCITING and potentially an epic day for the injury, all those affected, and those who might be affected in the future.

There is a possible treatment protocol for those who are diagnosed with Surfer’s Myelopathy. If the procedure I received is performed within the first few hours, the symptoms will potentially reverse. What’s even more exciting is to see my progress. After almost 3 years of paralysis, can the injury be reversed? Can what Dr. Bray performed potentially be the answer to getting about 50 paraplegics walking again?!

Dr. Bray has accepted a position to be on the advisory board for the Surfer’s Myelopathy Foundation. He is working with Ivette to get a panel of doctors together to discuss the prognosis and treatment. However, he is unavailable for the whole month of February because his practice is an official medical services provider of the US Olympic team! But the foundation is working very hard to try to pull a meeting together.

Thank you Dr. Bray

I can’t say enough to say what a blessing Dr. Bray has been in my life and all those affected by Surfer’s Myelopathy. By his curiosity, expertise and patience, he was able to identify the probable cause of this injury, which can keep people out of wheelchairs who would otherwise be paralyzed!

On a Side Note

At mass (in the same church I had married Ivette a few months before), after communion, I usually have a relatively structured prayer system – what I adore/admire about God’s world, what I’m sorry for, what I’m thankful for and requests of what I need/want. However, on the Sunday before the surgery, I simply prayed, “God, I know you know what I want. Now, I’ll just listen.” I sat in silence for a minute or so, and no words came to me, but visions of a rainbow did. I thought it was odd as I did not “hear” anything from God, but rather just saw an image. After talking to Ivette and Kennett (my brother-in-law) a little more on the possible significance of the imagery, Ivette found this online:

“The rainbow symbolises [sic] good news, hope, redemption and the ending of gloom. Since the sun can be a symbol of the self, it is also associated with the magical quest for the treasure of self-knowledge. The rainbow is a bridge between heaven and earth, between your earthly self and your higher enlightened self.” (http://www.dreamsleep.net/rainbow-dream-meaning.html).

Translate as you wish... :)

Also, a few months before the surgery, my brother-in-law, Kennett, performed reflexology on my feet. He noticed that right around where my injury was (T-6), on the “spine” part of my foot, there was some abnormality. There was a bump/lump on the arch of my foot at that area on both feet. However, after the surgery on Monday, that bump/lump on the “spine” part of my foot was no longer there!

In Closing

Monday, January 11, 2010 was an epic day for sufferers of Surfer’s Myelopathy. As the foundation board meets and more of the findings are finalized, I will be sure to keep you posted, or you can check the foundation website (http://www.smawareness.org) for more information. Thank you for all the kind words, thoughts and prayers. Thank you especially to Ivette, my mom, my mother-in-law (Lisa, who flew in for support), Kennett for helping me while I’m completely incapable with no legs and limited upper body right now and all those who have visited including my brother and his wife and my sister, Gabe, Darren and Peter. Let’s keep flooding the heavens and hopefully I will recover fully soon, and all those affected can get their feet back too! If/when that happens, I propose a Surfer’s Myelopathy Victim basketball game :)

Finally, please say a prayer for all those affected by the earthquake in Haiti. Although I don’t know anyone in Haiti at this moment, this hits home as I live in Los Angeles, and we could be in a similar situation at any given moment.

The incision was about 2 inches long. Depending on my recovery over the next few months, Dr. Bray may go in again to clear any other abnormalities. The tattoo is a Tahitian-style cross from the TV show "LA Ink", but that's a whole different blog post!

Surfer's Myelopathy Foundation!!!

I just want to update you that the Surfer's Myelopathy Awareness website has launched (a little while ago)!!! Check out the site whenever you get a chance:
http://smawareness.org/

Thank you to Ivette, Pegah, Lawrence and Katie for all of your hard work and dedication! I am excited to what the organization will be able to do for Surfer's Myelopathy victims now and in the future... Hopefully enough awareness will be raised where there won't be as many or as damaging instances in the future...

2 years...

Since the 1 year anniversary, I've only had 2 posts :(

I'm sorry I haven't updated this as frequently as I'd like.

Some points of interest...
-Went to Costa Rica for work... (Pura vida!)
-Taught training in the Bahamas... (Yah mon!) Not letting this injury slow me down...
-Still planning for the wedding (September 26, 2009) and falling more and more in love with Ivette...
-Still fighting hard every day to get better...
-Started using leg braces that go to my knee and a walker to get from point A to point B on 2 feet, sort of "walking" but very exciting!...
-Have seen some slight improvements, very slow, very slight, but improvements nonetheless :)

Hopefully I can put more pics/details up, but I just wanted to post today to take in another moment of silence for the 2 year anniversary since my life and those around me was changed.

Thank you for all of your love, support and prayers. Know that I am fighting, fighting, fighting. It hasn't been easy, but I know it'll all be worth it.

Si se puede. I will overcome.