MarieElena Louis

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During a routine chest x-ray as a follow-up to a previous, unrelated cancer surgery, a spot was found on my spine in the C-3 area of my neck, but in front of the spinal column, in the fall of 2006. Letting the holidays get behind me, the flurry of office visits, referrals and surgery was set up. Discussions with the neurosurgeon did not immediately indicate that this was a chordoma. We had come up with a plan to have the tumor removed, tested and then proceed with some radiation if it was cancerous. Surgery was performed during a 7 hour process. The incision started behind my right ear to approximately the clavicle, curved to the shoulder, then dropped down for a total of about 12 inches. The doctor was very suspicious and immediately sent me for an MRI. Away I was wisked by critical care ambulance for my test just one day out of surgery. By the next day, I was given the news that the tumor was most definitely a chordoma and I can say that from then till now, my life has not been the same.

Two weeks after surgery, I was having much difficulty breathing and again was taken to the emergency room. The diagnosis was blood clots - three to be exact. Two in the lung and one in my leg. I was immediately admitted back into the hospital where I stayed for one more week to regulate blood thinner levels. Being put on blood thinner medication automatically postponed my next surgery for six months. However, two months after the initial surgery, I began having difficulty breathing again. You guessed it!! Back to the hospital again with suspicions of more blood clots. Alas though, this time it was a paralyzed diaphragm which entrapped the lower portion of my right lung. Now I was having to deal with oxygen therapy, as well.

Physical therapy had begun three days per week. Two were water therapy and one was land therapy. All of this was exhausting with the new addition of lung difficulties which was labeled "Restrictive Lung Disease."

As the time drew closer to the next surgery, and because there were so many complications, the decision was made to use a Vascular Surgeon to make an open heart incision to remove the tumor and all the extensive areas required and then an incision in the back for inserting rods and all the necessary hardware to stabilize the spine. The estimate was for a 12 hour procedure. What I didn't know was that a duplicate incision under my left ear might also be required. This really shook me to the core, since if there were complications as in the first surgery, the comment was that I might be on a respirator the rest of my life. This did not set well with me at all! After much prayer and deliberation, the decisions were made - too many "ifs" with this many incisions. The final decree - one incision down the back only. This would make removing the tumor extremely difficult to reach, but the incidence of much nerve damage was too risky.

Surgery Day: I arrived at the hospital at 5:00 AM and it was a whirlwind. Complications with my blood being too thin caused hemorrhaging, which required blood transfusions. An incision was made from inside my scalp hair line to the middle of my back. Because of all the technical terms used to describe all they had done, suffice it to say that in the end, the tumor was removed, eight vertebrae were fused and the reality of it was that "I had about as much hardware as Home Depot!"

The recovery process has been long and extremely difficult. I have very limited upper body movement and there is always pain. But the bottom line is that I am alive and now enjoying all the things I took for granted before.

As of this writing, (Jan., 2009) almost to the day, I am two years out of surgery. It is time for another re-evaluation from the neurosurgeon, but with much diligence and even more prayer, my goal is to beat this thing!!

To raise not only awareness, but to also be a vessel to supply a means of helping to find a cure. Let's all be a part of the answer!!