In Their Own Words

Jon Spatz
Las Vegas NV

January 10, 2003

Happy New Year. This being the first holiday season with TM, we had to pace our activities slowly due to Jon's reduced energy levels. The things you take for granted before TM!

Let me introduce you to Jon and our family. Jon is 35 years old. He has lived his life in Las Vegas, NV since he was 3 years old. Jon is a local golf professional, working at Lake Las Vegas Resort as the tournament director and golf instructor. Jon and I have been married 12 years this October, and we have two beautiful daughters, Amanda, nine years, and Emily, four years. I work as a clinical exercise specialist for a private gym, and had previously been an emergency medical technician with specialized training for cardiac conditions at a local hospital. Prior to his diagnosis of ATM, he was rarely sick. Jon leads a healthy lifestyle, watching his diet and exercises regularly.

I'm sure that Jon's onset of TM is similar to the others in the Association. Please humor me as I dive into all of the sordid details. Jon and our family celebrated his 35th birthday, February 17, 2002. He had been fighting a sinus infection for approximately two weeks prior to his birthday. I had encouraged him to go to his doctor after over-the-counter self-medicating wasn't working. Being the typical man, he refused. He assured me that it would be over soon. One week into the sinus infection, he had returned from his daily bike ride complaining that his feet were numb. He got a flat tire shortly after his departure, and had walked the bike home in his biking shoes. Being the "expert," I commented that my feet would be numb also if I had walked home in those shoes. The shoes were for biking, not walking, and he had walked the bike home for several miles. The numbness continued throughout the day. By the next morning, Jon complained that his legs also felt numb. He went off to work that morning. I checked in with him later that day, and again encouraged him to visit his doctor. He visited his doctor that afternoon. The doctor did not seemed concerned with the numbness, and agreed that the numbness was due to the long walk home, hunched over the bike, in the wrong shoes. He was sure that the sinus infection had run its course, and had backed his diagnosis with lab work. No medication was prescribed, and the lab work was negative.

Jon continued to work throughout the week, although the numbness had progressed up his torso. By this time, I was worried. My work as an EMT had taught me to trust my gut, and my medical education was working against the portion of my brain that said, everything will be okay, the lab work was negative. In the back of my mind, I was concerned that this could be the beginning of Guillain-Barre. I pleaded with Jon to get a second opinion at our urgent care facility. The physician on-call agreed with me that the sinus infection needed to be addressed. I had mentioned my concerns, and he calmed my fears by prescribing a decongestant and a three-day course of steroids. We had the prescriptions filled immediately, and by the next morning, the numbness had improved. He insisted to go to work against my better judgment, and after checking in with him later that day, I was shocked to learn that Jon had taken the entire three-day course of steroids that day. It seemed that Jon was "out-of-it." The logical Jon seemed to disappear and a spaced-out impostor had replaced him. The next day we celebrated his birthday and the numbness had returned, and now his hands were affected. Jon's demeanor had completely changed. He confessed that he was now in pain, and concerned that something was wrong.

One day after his 35th birthday, February 18, 2002, our lives were changed forever. He had agreed to take the day off of work. The numbness had increased, and his hands were curled over in pain. I was terrified when he was unable to eat his lunch, because his hands would not cooperate. I fed him that afternoon, and my fear of Guillain-Barre had returned. I went to work that evening, after Jon insisting that he was feeling okay. Shortly into my shift, I called Jon at home. His voice was filled with fear, the numbness was worse, and a band sensation had set in at his chest, and he complained that it was difficult to breathe. I called my supervisor, asked permission to shut the gym down, and raced home. I called Jon's mother and asked her to meet me at the house to convince Jon that he must go to the emergency room. He agreed, and we went to the hospital in our neighborhood. I informed the triage nurse of my concern of Guillain-Barre, and after a short conversation with Jon during his work-up, she agreed with me. Jon was now having difficulty breathing, and was placed as priority one patient in the emergency room.

After an introduction with the on-call physician, he listened to the details of Jon's past two weeks. He disagreed with my diagnosis of Guillain-Barre, and reminded me that although I had a higher than average knowledge of medical conditions, I was not a doctor. He was working Jon up as a chest pain patient, and did not seem concerned with the numbness and pain. Jon began the many tests for cardiac conditions. He was given Nitroglycerin for the band sensation in his chest, and as you could probably guess, there was no relief. Now, the emergency room had a new problem. Jon's blood pressure had dropped to a dangerous level due to the Nitroglycerin. The on-call emergency room physician was confused after all of the cardiac tests were negative, and the band sensation around his chest persisted. We were informed that Jon was going to spend the night as they continued more tests.

The next morning, Jon continued with more cardiac tests. I was pleading with the emergency room doctor for a neurological consult. He gave in later that day after all of the cardiac tests returned with a negative result. Jon was admitted to the cardiac intensive care unit, and we met with the assigned internal medicine physician on-call. He carefully listened to Jon's story, and my concerns of Guillain-Barre. He agreed with me, and now Jon was almost completely immobile. His legs were completely numb, but he was still able to walk, although his gait resembled Frankenstein. The band sensation around his chest had increased, but the nursing staff was able to keep Jon breathing comfortably with painkillers and muscle relaxants. Jon was unable to use his hands, as they were curled over with pain. He had no reflexes from his elbows down. The on-call neurologist was brought in.

Jon began the several tests the neurologist ordered. Soon, we had a preliminary result of a brain and spine MRI. There was a shadow at C2. The internal medicine physician sat me down to discuss the results. The news was not good. The radiologist had read the report as possible neoplastic tumor at C2. They were calling in a neurosurgeon for a second opinion and continued with more tests. I met with the neurosurgeon later that day. He and the neurologist had consulted with each other, and agreed that this was not GuillainBarre, but possibly MS or a tumor around the spinal cord. They were going to continue more advanced tests, and informed me that Jon's condition was worsening. They were faced with putting Jon on the ventilator that evening if his breathing continued to grow labored. I was told by the neurosurgeon if we had a family priest or rabbi, I should call him or her now. They were also going to try a course of steroids because Jon seemed to respond to this medication after the urgent care visit, but I was told that if this was a tumor, Jon would not respond.

It seemed as if the neurosurgeon, the neurologist, and the internal medicine physician were completely confused. Jon's symptoms did not fit into any diagnosis that they were familiar with. The neurosurgeon was concerned with the shadow on the MRI, and informed me that although he was the only gamma-knife surgeon in our state, he would not perform a biopsy due to the position of C2. My mother called our priest and he met me with our friends and family around Jon's intensive care bed. Our priest performed the Annointment of the Sick. We all received Communion and told Jon how much we loved and cared about him. We tried not to frighten Jon, but knew that we could be saying our last good-byes. Our priest and friends left and the nursing staff brought in the ventilator to Jon's room to save time in case of a breathing emergency. Jon's mother and I began the night watch over Jon fearing the worst.

The next morning, Jon had improved dramatically. The numbness persisted, but the band sensation had left his chest. His breathing was no longer labored. He was alert, and for the first time in about a week and half, he was no longer "out-of-it." Jon was moved out of the cardiac intensive care unit to a medical floor. They continued with testing, mainly lumbar puncture, and increased the dosage of steroids. Jon continued to improve. His reflexes had returned in his arms, and the mobility of his hands increased, especially after a course of steroids. We were told that the lumbar puncture was negative for protein, but the hospital was sending the test to a separate out-of-state laboratory for a second opinion. We were given the option of home health care, which the doctors encouraged. We agreed that this was best for our family, as we have two children that were unable to see their father during this ordeal. Jon was anxious to get home. We left the hospital not knowing Jon's diagnosis. The neurologist and neurosurgeon were baffled, but decided that it was either a tumor or MS. They informed Jon to starting thinking of a new line of work.

We soon had a hospital setting in our home along with two wonderful nurses. Jon was able to be with his daughters, and being home created a sense of well being. Jon continued his course of steroids and improved daily. We said goodbye to the nurses a week and half later. Jon and I had decided not to continue his care with the hospital neurologist, but had a follow-up visit with the neurosurgeon in his office.

The second laboratory test results were in from the lumbar puncture at the neurosurgeon's office. No protein present. Once again, the doctor was baffled at the results, but encouraged us to see another neurologist for a second opinion. We soon met with the second neurologist. He reviewed all of Jon's tests and hospital notes. We finally were given a diagnosis. Acute Transverse Myelitis. Jon continued with more testing in the neurologist's office to rule out a first episode of MS. The tests were negative. ATM was confirmed. We were given the facts of ATM, and were finally able to make some sense of what Jon had been through.

Jon continued to improve although the neurologist had informed us that Jon suffered a demylenation in both of his forearms and fingers. We were told that the next three months would be critical in Jon's recovery, if he was lucky enough to experience it. The lower body numbness was gone, but the numbness and pain persisted in his hands. Jon was prescribed painkillers and continued with outpatient spine and brain MRI's to watch the inflammation at C2.

The next month, the numbness only persisted at the tips of his fingers. The pain in his hands also improved, although his energy level was low. He was able to return to light duty at work. The MRI's confirmed Jon's improvement, the inflammation had decreased. Jon was encouraged to receive physical therapy for his hands. Jon agreed, but did not attend. The neurologist gave Jon exercises for his hands that he could do on his own, and urged him to slowly return to his previous exercise habits.

Slowly Jon's energy levels returned, and the numbness and pain in his hands significantly improved. If he does too much, the pain returns. If Jon is sick, the symptoms return, numbness and pain in his hands. Luckily Jon hasn't been sick often. The last MRI shows no inflammation at C2.

We have been extremely blessed and lucky that Jon's TM has improved. I understand now that it was the timing of the steroids at the hospital although the neurologist and neurosurgeon had never mentioned TM to us aloud, or in their hospital notes. I truly believe that there was a higher power watching over Jon at the time, as he was receiving physical and spiritual care at a Catholic hospital. It was a trying time for our faith, but we both had an overwhehning feeling that it was going to be okay.

Jon has been able to return to his beloved golf game and teaching with no lingering problems. He has good days and bad days. I'm sure that you know all about this!

We are still learning about TM and appreciate all the information your organization has provided us. Jon's neurologist and I are encouraging him to attend physical therapy. The literature you provided also is nudging Jon in this direction. We take each day at a time. We spend as much time as possible with our friends and family and learned how to stop and smell the roses. I don't know why this has happened to our family, but know in my heart that all things happen for a reason.

Wishing you health and happiness this New Year.
Jon and Tammy Spatz