Sionnan is 16 years old. She was diagnosed at 11 years old, September of 1997, with Arnold Chiari Malformation.
Her symptoms started about a year before this. Before her illness, Sionnan was an A student who was very active in school programs, along with being a professional Scottish Highland Dancer, in which she won many medals. She continued dancing up until a month before her first surgery.
Her first surgery was a simple decompression done in November of 1997. Sionnan's symptoms got worse, and a flow study was done six months later, which showed there was no flow of spinal fluid; the decompression had been done incorrectly. We stayed with the same surgeon, as he was considered the best in Connecticut, and in April of 1998, he preformed a larger decompression along with a Dura Graft, and shrinking of the tonsils. This was the surgery that caused damage to Sionnan's brain, though we did not know this until much later.
Sionnan became seriously ill after the surgery, and was discharged from the hospital with meningitis. The surgeon refused to acknowledge Sionnan's illness and another doctor was called down to treat her.
Although she recovered from the meningitis, she continued to deteriorate throughout the summer of 1998. In September of 1998, I took her to another hospital where it was discovered that the dura had ripped open and was leaking spinal fluid, along with the flow being obstructed due to scar tissue, and another surgery was preformed. Still she continued to get worse, but no one would help her.
By this time, I had joined a support group called WACMA, and in May of 2000, with the help of some of the people I came in contact with on this site, we were led to a specialist in Chicago. Upon examination, we learned that she had a very rare complication caused from an over-aggressive surgery called Cerebellar Slump, which was so severe it was causing pressure on her brain stem and was considered life threatening. At the time, the Dr. had no experience in correcting this disorder, and knew of no one that could. Again, WACMA helped us find a doctor in California who felt he could help Sionnan. Finding this doctor was wonderful, but now the challenge would be finding the finances to get there. Once again, by the kindness of my friends at WACMA, we located an airline that would fly us to Los Angeles, free of charge, and were given enough money to fund our stay.
The Neurosurgeon told us that there was a possibility that Sionnan would not survive the surgery, but that the pressure on the brain stem would kill her, so there was no choice. She seemed to do better after this surgery for a few weeks, but on our return home to Connecticut, she became sick. We returned to California three months later, again having to rely on our friends at WACMA for funding. A fifth operation was preformed, this time putting in a shunt. This did little to improve her condition, but we were told that there was nothing else that could be done for her.
We took Sionnan back home. Her symptoms continued to worsen, and she was requiring high doses of Morphine every few hours. She was unable to perform any normal daily activities, not even walking. Her menstrual cycle started around this time, and the bleeding has yet to stop. We also noticed that she was gaining a significant amount of weight, even though she was eating very little. She has seen an Endocrinologist and a Gynecologist, but the only thing that could be found was an abnormal thyroid. She was given medication to help correct this problem, but had a reaction to it, and the treatment was discontinued. At that time, we were told that her medical condition was too unusual, and they could do no more.
With her continuing decline, her pediatrician and I continued to look for doctors that could possibly help. With every attempt, we were told that there was nothing to be done. We finally located a doctor in Washington who, upon studying her MRI's felt he could help, but our finances were completely exhausted, and the insurance company refused to pay.
I was becoming frantic. She was still taking high doses of morphine, but it was doing little for her pain at this point, she continued to gain weight, she couldn't walk more than just a few feet, the menstrual bleeding continued, and she hadn't attended school since the 6th grade.
My only hope was the doctor in California that had treated her before, and for the next eight months, I made numerous appeals with the insurance company, but they continually refused. I did, however, locate a children's advocate who was able to convince the insurance company to pay for the medical expenses, but that still left no means of lodging or meals while we were there, and we were told to expect to be there about a month. Desperate to receive treatment for Sionnan, we left for California on March 22nd with little more than faith in our pockets.
After numerous tests, he was still unable to find anything that could be surgically corrected, but he was very alarmed with Sionnan's daily menstrual bleeding, and referred us to a pediatric Endocrinologist. Unfortunately, our money ran out, and we were forced to return home before being able to see him.
Hearing of our continued lack of treatment for Sionnan, our friends at WACMA encouraged us to take Sionnan to New York to a new Chiari clinic that has opened there. Upon contacting them and explaining our situation, they agreed to see her immediately. With no other choices, I put my rent and utility money in my pocket, and took my daughter to New York.
Massive testing, including a 3-D CT Scan has revealed numerous complications. We were also informed that the surgery to repair the brain slump had failed, and the spinal fluid flow continued to be blocked. It has also been recommended that Sionnan see a Hematologist and Pediatric Endocrinologist. Although the doctor there is unsure of the probability of improvement, he feels that surgery is her only hope to stop progression. So, yet another trip to New York is planned for the near future.
I'm not sure how this trip will be financed, as I'm still trying to catch up from the last trip, but Sionnan deserves this chance, and somehow, the trip will be made.
