Have had a vaiety of emails wanting to know where to go for help with chiari. Have a patient who intially was treated badly by various specialists in Canada (Regina, Calgary, Toronto) and found great help from contacts with sites in USA. I asked her to write up some suggestions – and here they are.
Please find below the sites of two of the major spinal cord centers with doctors the best in their field, in my opinion, anyway, when dealing with spinal cord injuries, tethered cord, Chiari malformation and Syringomyelia. Dr. Paolo Bolognese is with the Chiari centre and Dr. Scott Falci is still at the Craig Institute in Colorado. They all reply to e-mails and read MRI’s and so forth and anybody feeling they are not getting the proper treatment or being misdiagnosed should definitely look into these sites. Dr. Falci has a right-hand man (woman) so-to-speak, who fields all his calls and is very knowledgeable in the field. These two sites provide a lot of information and even if one cannot make it to their clinics, they will provide answers to questions to those in need.
Hope this helps somebody.
See you soon Doc.
Cindy Carlston
http://www.chiariinstitute.com/dr_paolo_bolognese.html
Also with the above Chiari site there are patient boards and support boards that Dr. Bolognese sits down and comments on and responds to on this site to make sure information is not being used incorrectly. The sites are a real life saver when you are feeling lost and defeated and nowhere to turn for help and begin to believe that you possible are crazy as some of the specialists tell you that you are, just from lack of knowledge themselves. Instead of telling you they don’t know or they are stumped, they prefer to label you as having conversion disorder! I’m sure I was not the first to go all over Canada to obtain this lovely label. There are support group sites, with a few of us in Saskatchewan. Should anyone need help never hesitate to call me or e-mail me. I would love to do what I can from “a patient’s perspective”.
Dr. Falci also is heavily involved in stem cell research
http://www.craighospital.org/Left-Nav/Rehabilitative-Neurosurgery/
The Conquer Chiari site has so much information and has come such a long ways since its inception, even people knowing that there is truly something wrong in spite of professional’s advice can take comfort in reading and gaining knowledge and compare symptoms they might be experiencing as set out on this site.
Tethered cord has now gained the respect it deserved and is finally being acknowledged as part and parcel of chiari/sryingomyelia.