Laura is 17 years old, and lives near Seattle Washington. I was fortunate enough to meet Laura at The Variety House in February. She had just had her decompression/fusion and had just been released from the hospital.

Laura has had symptoms for as long as she remembers. Heart issues took priority when she was 14 years old. She was passing out when walking, and dizziness. These symptoms pointed to cardiology, she had a pacemaker placed when she was 15. We now know the cardiac symptoms were neurologically related.

Laura joined an on line support group for people with pacemakers. This is where she met Jessica.  When Laura explained her symptoms Jessica mentioned that she could have Chiari Malformation. Jessica recommended Laura go to TCI for an evaluation. After a year and a half of no answers, in October 2005 Laura went to TCI where she was told she had Chiari, EDS, a retroflexed odontoid, and cervical instability. If Laura hadn’t joined the support group she still may be suffering from CM/EDS.

Laura and Jessica hope to meet when they both go back to TCI for follow up exams.

Laura had her decompression and fusion (fused to C5) surgeries done late Feb. 2006. She was released on the 9th day to The Variety House. TCI wanted to remove her sutures before they returned home because of wound healing issues with EDS.

Recovery has been slow for Laura, she had severe muscle spasms. She said it took a long time to be able to sit up for 5 minutes. She has had kidney problems since her surgeries, including a stone. She has been going for physical therapy to gain a bit of neck rotation and for Thoracic Outlet Syndrome. The PT has been working on breathing techniques and stretching, which has helped with the TOS symptoms and her range of motion has doubled to, on average, 20 degrees.

The previous symptoms are gone, but new ones surfaced. She now has back and leg pain, numbness and tingling in her pelvic bone area. More tests were run to find she has Tethered Cord Syndrome. She is currently waiting for a date for TCS surgery.

Laura has two younger brothers, ages 14 and 9. She said her oldest brother has symptoms of EDS, and her younger brother has been diagnosed with migraines. She’s concerned because she was 9 when her headaches started, and they were diagnosed as migraines.

Chiari has changed Laura’s life in many ways. She said that her faith has become stronger. She also said that it has changed what she can and can’t do in school. The only thing it hasn’t changed is she still doesn’t like to clean her room.

Laura will graduate from high school in 2007. She is planning on looking at colleges this summer. She would like to become a pediatric neurosurgeon or cardiologist. She’s always wanted to work with children in medicine, but having gone through what she has, her passion has changed to neurosurgery as well. She will make a wonderful pediatric neurosurgeon.

Laura has been grateful to church members for being so supportive. She has taught first communion classes for the past 4-5 years and sang in choir for almost a year, until her symptoms caused her to not be able to stand for the whole hour. Her faith has brought her through her past surgeries and will be stronger for her tethered cord surgery.

Laura’s hobbies are playing the violin and guitar, read and write, and called herself a fashionista and a shopaholic. What teenage girl isn’t a shopaholic? She likes to hang out with her friends, ski, play tennis, and loves volunteering in many different ways, from being on the administrative team for a world wide online pacemaker support group to working with children, and is working on setting up a Chiari run for her Senior project.

This story shows how powerful the Internet can be.  Two young ladies were able to find each other, and this has changed Laura’s life. I have full confidence that Laura will meet her goals in the future. She is an extremely gifted young woman.

By Kathleen Grigg
Laura