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...


At March 12, 2010 at 4:28 PM , Blogger Ivette said...

I love you, your strength, your courage, and your unrelenting faith. I was listening to NPR on my way to work this morning and it seemed like this story was aired just for us today: From the story: “Rabbi Harold Kushner says that if he had to face the fact that God was either all-powerful but not kind, or thoroughly kind and loving, but not totally powerful, he would rather compromise God's power and affirm his love. "The ... theological conclusion I came to is that God could have been all-powerful at the beginning, but he chose to designate two areas of life off-limits to his power," Kushner says. "He would not arbitrarily interfere with laws of nature. And secondly, God would not take away our freedom to choose between good and evil."”

I’ve never understood why bad things happen to good people (I guess we have to read his book) but it is comforting to understand that the bad is never an act of God – but of nature, and too often influenced by our free will. If God had the power, there is no doubt that you would be up and walking; yet, we will remain strong in knowing that God is kind and will help guide us through whatever life may throw our way.

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At March 19, 2010 at 10:36 PM , Anonymous Anonymous said...

I have always wondered why do bad things happen to good people. Thank you Ivette for the beautiful insight and theological conclusion from Rabbi Kushner.
Joe, your strength, your courage and your faith has been very inspirational. My friends have told me stories of their children facing some difficult situations and their thought would be "How would Joe handle this problem?"
You are blessed in so many ways, Joe. You have a very loving wife whose family and extended family love you so much. You have your family that love you as well. We will always be here for you.
God Bless,

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I just found news of Brett's death on the internet today. My name is Bernie Torres and Brett was my domestic partner from 1989 - 1998. I'm shocked and saddened by this news.

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