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Ely's doctor informed him that he would not see him again until Ely consulted a psychiatrist and started taking antidepressants. Because he felt that he had no choice, Ely tried the antidepressants and every remedy and medication suggested.
When the antidepressants did not work, the psychiatrist was agreeable to Ely seeking advice elsewhere. The confirmation that something was physically wrong validated what Ely knew to be true all along: this was not an emotional problem.
Up until this point, Ely had consulted with only a few doctors, but had learned a lot about the medical community. For instance, many doctors like to make their patients wait. After this lengthy wait, some will only spend about five minutes on a diagnosis. Ely also learned that doctors are not gods, but in fact, human.
Ely decided to take matters into his own hands and conduct research at a local medical library. Because he did not yet have a name for his condition, it was a very complicated process, but he did not give up!
In the meantime, his symptoms progressed and he started experiencing stiffness and pain in his neck and numbness in his hands. He still had the headaches, too! A new doctor was consulted. Unfortunately, this doctor conferred with Ely's previous neurologist and concluded, "Ely, I guarantee you there is nothing wrong."
Ely returned to the medical library. All indications pointed to the spinal cord. After consulting a new neurologist at a different medical center, Ely requested a cervical MRI. While filling out the necessary paperwork, he noticed that it did not require contrast (dye). After performing initial scans, the technicians pulled him out and informed him that they were going to perform the scan again - with contrast.
Ely was so happy he was in tears; he knew the technicians had found something! At 4:00 p.m. the next day, the doctor called him at home and relayed the diagnosis of syringomyelia. After four years, Ely finally had a name for what was happening to his body.
That night, Ely could not sleep. At 2:00 a.m., he said to himself, "This is America! There has to be some organization devoted to SM." He tried general information but found nothing. The next day, Ely called the Spinal Cord Injury Hotline and was in luck. The operator also suffered from SM and referred him to ASAP.
Ely immediately contacted the ASAP office and was given the history of its founders - Barbara and Don White.
Barbara and Ely connected with each other. They talked on the phone for many hours almost every day for weeks. Barbara was a quadriplegic with seven surgeries, numerous shunts and constant pain, yet was willing to talk with him about his condition. Ely was enthralled with her kindness.
Barbara suffered for years with many terrible symptoms of SM. Unfortunately, the only information available was through her doctor. She and Don founded ASAP in 1988 to provide support and information for others suffering from SM. Barbara felt very strongly that other SM patients should not suffer the lack of information and support that she experienced for many years. Her dedication to people she had never seen before and many she would never see impressed Ely. "After all the suffering she was in, talking to me every day for hours. Just to help a complete stranger."
After lengthy discussions, Ely asked Barbara what she would do in his place. Her first choice was to consult with Dr. Bernard Williams in the United Kingdom. In October of 1991, Ely contacted Dr. Williams and sent him his MRIs. Dr. Williams diagnosed Ely with Chiari in addition to SM. Four brain MRIs, a radiologist, and his neurologist missed his Chiari. Ely feels strongly that if he had been correctly diagnosed early on with Chiari, his syrinx could have been prevented.
Ely scheduled surgery for February 13, 1992, in the United Kingdom. American medical insurance would not cover the surgery, so Ely borrowed the money for the surgery and the trip. After everything he had been through to get a diagnosis, Ely wanted to see the best doctor available. Even if there were problems, he preferred that the problems come from the best.
After his arrival in the UK, Ely grilled Dr. Williams for over an hour. Finally, Dr. Williams had enough questions and threw Ely out of his office! If you knew Dr. Williams, you'd understand. He cared deeply about his patients, but also had a most unusual bedside manner. Ely considers Dr. Williams as the doctor who saved his life and continues to hold him in the highest regard.
His surgery consisted of decompression from C-2 to C-5. Immediately, 90% of Ely's headaches vanished. The numbness stopped ten days after surgery. To date, the syrinx has not enlarged.
Dr. Williams agreed to come to the United States and address the annual ASAP conference in Washington, DC in 1992. Many other doctors did not understand Dr. Williams' unique approach to SM and his down-to-earth terminology of "suck" and "slosh" when describing the mechanism of a syrinx. His ultimate goal was to find a cure for SM. He was way ahead of his time and considered "crazy" by many other neurosurgeons. However, as time went on, many American doctors began consulting with Dr. Williams, and before his death in 1995, he was regarded as one of the top SM experts in the world.
Through this journey, Ely learned many things. SM is very unpredictable. It has a mind of its own. You never know if, or when, or why a syrinx expands. While he realizes that it is too late for some SM sufferers, Ely and ASAP's ultimate goal is a cure for SM. Until finding the cure, continuing Barbara's work and providing information and support to patients is crucial. Even today, too many people lack proper medical care and even basic information about SM. Just as important is educating physicians about SM/Chiari so patients will not have the same struggle and delay in diagnosis that Ely experienced.
Because of Ely's persistence and determination, he was able to get the best treatment available at the time. That treatment has allowed him to enjoy a full and active life with minimal residual symptoms. Today, Ely lives in New Orleans where he owns a fine jewelry store. He has been a regular at most every ASAP conference, even if he's only in time for the banquet! Ely believes strongly in ASAP's mission and would like to see more people get involved.
To Ely, ASAP, the conferences, the doctors, Patricia Maxwell and all those who helped ASAP grow and develop - are priceless. "I would like to thank everyone in the past, present and future who helped ASAP as it started and are helping now as it continues to grow."
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