Florida Doctor Treat Syringomyelia

Y Laurie: 2008 Annual ASAP Medial Conference

I attended the ASAP Medical Conference in Arlington, VA July 23-26. I left there with more knowledge of the conditions Hunter and I have been diagnosed with. I also met other people that have been diagnosed. It was nice sitting down face to face and talking with people that understand the frustration of being diagnosed with rare and unknown medical conditions. , We met in the evening to pick up conference materials and we had a meet and greet with appetizers. This evening I met people from different places in the United States, FL, NC, NJ, CA, and MD, I felt sad listening to their stories. Many of these people do not have doctors that know how to treat them. I felt blessed, that I am a patient of The Chiari Institute. I truly feel like Hunter and I am in the best hands at TCI. Pediatric Neurosurgeon, Dr. Jerry Oakes spoke about some of the unique symptoms that he sees in infants with Chiari. He said the parents describe the infant as the best baby in the world, the baby does not cry. He explained this would be because the baby has learned when he or she cries they arch back and the baby would have pain in the head and neck. They also found these infants were not having bowel movements because the straining would bring on headaches and pain. This made me think back to when Hunter was an infant. Hunter was my best baby, he almost never cried. He was also always constipated and had few bowel movements. Hunter still has these "unique symptoms". Pain Management Dr. Ann Berger , spoke some on neuropathic pain, and how this is more difficult to treat than the other types of pain due to the damage of the nerves. This type of pain has been difficult for my physicians to treat. Now I have a much better understanding as to why. She spoke about non-medication treatment to be used, some I can remember she mentioned are massage, acupuncture, tens unit, reiki, and meditation. Dr. Berger has written a book titled Healing Pain , I plan on buying this book soon. This is the day I was most excited about. Dr. Bolognese , my neurosurgeon from The Chiari Institute was speaking. The topic of his session was the "Association of Chiari malformation Type I and tethered cord syndrome and the preliminary results of sectioning the filum terminale". Since I have had sectioning of the filum terminale (tethered cord surgery), I wanted to hear these results. When he was explaining the results, I felt like I could of been one of the patients in these results.

Famous first facts, a record of first happenings, discoveries, and inventions in American history

Spinal network

Biological abstracts/RRM.

Current list of medical literature

JAMA., The Journal of the American Medical Association