Oropharyngeal dysphagia = when your upper esophageal sphincter, pharynx, larynx, and/or tongue fail to coordinate properly when trying to swallow.
Can occur when one or more of the following nerves is damaged or compressed: facial nerve (CN VII), glossopharyngeal nerve (CN IX), vagus nerve (CN X), and hypoglossal nerve (CN XII).
Now that you know it’s a thing… ask your doctor for a swallow test to confirm it.
Neurosurgeons on this list are ones that have focused much of their practice on Chiari Malformation and Comorbid Conditions. Not everybody will agree with who is on this list and that’s okay. While we do encourage members to share THEIR OWN EXPERIENCES WITH THEIR DOCTORS, we DO NOT ALLOW DOCTOR BASHING in our groups! The doctors that have concerns (some of which are serious/major concerns), amongst patients in our group/site, we have marked with a (!) after their name. It might be worth asking in the group for those that have had negative experiences to share with you about what happened through private message.
Dr. Petra Klinge – Rhode Island, USA
https://brownneurosurgery.com/our-team/petra-klinge-md-phd/
593 Eddy Street, APC 6, Providence RI, 02903; Ph. 1(401)793-9139 or 1(401)793 9166
Specializes in Tethered Cord and Occult Tethered Cord. *No remote consultations.
Dr. Fraser Henderson – Maryland, USA
http://metropolitanneurosurgery.org/practice/henderson.html
Spine Team Maryland 8116 Good Luck Road, Suite 205 Lanham, MD 20706; Ph. 1(301)654-9390
Specializes in Problems of the Craniocervical Junction (CCI/AAI/BI). Does craniocervical fusions. Insurance might be an issue. *No remote consultations.
Dr. Paolo A. Bolognese (!) – New York, USA
https://nspc.com/physician/paolo-bolognese/
Chiari Neurosurgical Center at NSPC 1991 Marcus Avenue, Suite 108 Lake Success, NY 11042
Ph. 1(516)321-2586; email pbolognese@chiarinsc.com
Specializes in Complex Chiari & Problems of the Craniocervical Junction (CCI/AAI/BI). Does craniocervical fusions. *Known to do video consults for $300. To initiate consultation for 2nd opinion, contact
Jeffrey.Wood@snch.org.
Dr. Gerald Grant – North Carolina, USA
https://med.stanford.edu/profiles/gerald-grant
Duke Children’s Health Center Neurosurgery Clinic, 2301 Erwin Rd, Durham, NC 27710-4699
Ph. 1(919)668-8557 or 1(919)684-5013
Chief of NS. Specializes in Pediatric NS > Chiari & Fusions.
Dr. Anthony L. Capocelli (!) – Arkansas, USA
http://www.orthoarkansas.com/capocelli.php
Ortho Arkansas – Orthopedics & Sports Medicine 10301 Kanis Rd. Little Rock, AR 72205
Ph. 1(501) 604-6900 (800) 264-5633
Neurosurgeon specializing in Chiari. Does craniocervical fusions.
Dr. Dan S. Heffez (!) – Wisconsin, USA
https://www.heffezchiari.com/
Private Practice Milwaukee, WI
Ph. 1(414)955-7188
Neurosurgeon claiming to specialize in Chiari.
Dr. Holly Gilmer (!) – Michigan, USA
https://www2.mhsi.us/doctors/holly-gilmer
Michigan Head and Spine Institute 29275 Northwestern Hwy., Suite 100, Southfield, MI, 48034
Ph. 1(248)784-3667
Neurosurgeon claiming to specialize in Chiari.
Dr. Douglas L. Brockmeyer – Utah, USA
https://healthcare.utah.edu/fad/mddetail.php?physicianID=u0034828
The University of Utah Health 50 North Medical Drive, Salt Lake City, UT 84132
Ph: 1(801)581-2121 douglas.brockmeyer@hsc.utah.edu
Specializes in Pediatric NS > Chiari & Fusions.
Dr. Richard C. Anderson – New Jersey, USA
https://www.valleyhealth.com/doctors/richard-c-anderson-md
Valley Hospital Health System 1200 East Ridgewood Ave Suite 200, Ridgewood, NJ 07450 Ph: 1(201)327-8600, 1(212)305-0219, Joanna (nurse) 1(973)758-3616 Rca24@cumc.columbia.eds
Specializes in Pediatric NS > Chiari (not sure about fusions).
Dr. Jeffrey Greenfield (!) – New York, USA
https://weillcornell.org/jpgreenfield
Weill Cornell Brain & Spine Center 1305 York Avenue, 9th Floor New York, NY 10021
Ph. 1(212) 746-2363
Specializes in Pediatric NS (but does take adults) > Chiari, some comorbids, does not do fusions, but contracts them out to another surgeon. Known to do remote online for $300 and phone consults for $500.
Dr. Wouter Schievink: LEAK SPECIALIST (NS) – California, USA
https://www.cedars-sinai.edu/Patients/Programs-and-Services/Neurosurgery/Centers-and-Programs/Cerebrospinal-Fluid-Leak/
Cedars-Sinai Advanced Health Sciences Pavilion, 127 South San Vicente Blvd. Suite A6600 Los Angeles, CA 90048
Ph. 1(310)423-3277 Wouter.schievink@cshs.org
Neurosurgeon who specializes in leaks. Known to review MRIs for free in patients with low pressure symptoms.
Dr. Ian Carroll: SPINAL LEAKS (EBP, Anesthesia, PM) – California, USA
Stanford 430 Broadway St., Pavilion C, RM 462; MC 6343, Redwood City, California 94063
Ph. 1(650)721-7286 (office) ic38@stanford.edu
Not a neurosurgeon, but his daughter had an Acquired Chiari secondary to a spinal leak, and therefore is VERY PASSIONATE about trying to find leaks in patients dx’d with Chiari if they have low pressure symptoms.
Dr. Kenneth C. Liu: VASCULAR NS – Michigan, USA
https://www.bronsonhealth.com/doctors/kenneth-liu/
Bronson Neuroscience Center – Kalamazoo 601 John St., Suite M-124 Kalamazoo, MI 49007
Ph. 1(269) 341-7500 kenneth.c.liu.md@gmail.com
Specializes in Neuroendovascular Surgery, Venous Hypertension, Intracranial Hypertension
Dr. John Oró
https://auroramed.com/service/ccc
Colorado Chiari Institute – The Medical Center of Aurora 1501 S. Potomac Street Aurora, CO 80012
Ph. 1(303)695-2663 ChiariCare@HealthONEcares.com
RETIRED AS SURGEON, but oversees Colorado Chiari Institute
Dr. Faheem A. Sandhu
https://www.medstarhealth.org/doctor/dr-faheem-akram-sandhu-md/
MedStar Georgetown University Hospital – Neurosurgery 10401 Hospital Drive, Suite 101 Clinton, MD 20735
Ph. 1(301) 856-2323
NO LONGER ACCEPTING EDS PATIENTS
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