Helpful Documents:
(The questions above was our personal list…..As I sat waiting, and waiting for the day to come to see the neurosurgeon... my list of questions got longer and longer! When I first started this list... I first asked all my groups if there was a list somewhere, to help me out. There really wasn't! Which surprised me, because I know all these parents asked questions... but I guess a list wasn't put together. I did find a couple online, or some of those parents I had asked suggested a few questions to ask…. so with some collaborating of a few questions I have found here and there... and from one night Ben & I sitting down together... that is what we came up with!)
- Other Great Questions to Ask
- ASAP's Info Booklet
- Chiari Books
- Chiari Malformation Symptoms
- Wong-Baker Faces Scale for Pain (great for children)
- Medical Abbreviations
- Beighton Score & Brighton Scale (EDS)
Doctors:
*Our neurosurgeon is Dr. Harold Rekate. The advice I give to other parents and patients is that there are many different neurosurgeons and neurologists out there. As one may be great for one patient, that same one might not be good for another. You have to do your own research, which includes getting multiple opinions to find the RIGHT doctor for you & your family.
Dr. Harold Rekate, The Chiari Institute, Great Neck, NY (Kaylie's neurosurgeon)
Organizations:
29 Crest Loop
Staten Island, NY 10312
Tel: 718-966-2593
Fax: 718-966-2593 (Call First)
American Syringomyelia & Chiari Alliance Project (ASAP)
P.O. Box 1586
Longview, TX 75606-1586
Tel: 903-236-7079 800-ASAP-282 (272-7282)
Fax: 903-757-7456
Conquer Pediactric Chiari
320 Osprey Court
Wexfor, Pa. 15090
http://www.conquerchiari.org
724-940-0116
Conquer Chiari
http://www.conquerchiari.org
Chiari Connection International
http://www.chiariconnectioninternational.com
Facebook Support Groups:
American Syringomyelia Alliance Project (ASAP) FB Page
ASAP's Parent's Page FB Page
Conquer Pediactric Chiari FB Page
Chiari Friends of Oklahoma FB Page
Ehlers-Danlos Support Group FB Page
*** There are many more Chiari FB pages/groups out there... those are typically started by a parent or patient with Chiari…. if you are looking for other groups feel free to contact me, or you can ask others in the groups above to refer you to other groups.
Traveling….
**If traveling, don't forget to go by the medical records room to get or have surgical records/medical records faxed to your doctors back home. Also, if your child had any scans done; i.e.: MRIs, CT… get a copy on CD for yourself.