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!