Hi, I am new to this forum and very newly diagnosed with Chiari I malformation (with a mild herniation but massive symptoms), occult tethered cord syndrome (attached poseriorly and with major chronic pain in coccyx, bladder dysfunction even after insertion of a collagen sling, pelvic dysfunction, etc., and Classic Ehlers-Danlos Syndrome. My geneticist, Dr. Clair Francomano at Greater Baltimore Medical Center in Towsend, MD is a GREAT doctor, and realized the CM and TCS and sent me for evaluation to the Chiari Institute in Great Neck, NY. I met with Dr. Paolo Bolognese and am scheduled for surgery to release the tethered cord on May 15, 2009, at which time they will also be doing "invasive cervical traction" to see if it helps with the Chiari headaches and functional cranial settling.....
I am very nervous about what it will be like after this surgery, and what other people's experiences have been who have had similar issues, symptoms and surgical procedures. Does anyone have any suggestions? I would love to hear how you coped, what you experienced and how you are doing now. I have tried all kinds of alternative therapies and approaches and I actually am an energy healing practitioner, but feel stymied by all of this....even though I have had major symptoms my whole life with loads of complications, I didn't realize what I had until age 48 when I met my birth mother and found out that this runs in her family...
Thank you all in advance for any help/advice/sharing that you can offer. I live in S. Florida and would love to form a support group if there is anyone else out there, or do Skype with any of you anywhere in the world if you are up for it.