Quantcast

Eagle Syndrome - Online Support Group

US Doctors Familiar With ES, 2019

US Doctors Familiar With Eagle Syndrome 2019:
THIS IS A LIST OF DOCTORS WHO HAVE HELPED SOME OF OUR MEMBERS FIND SOLUTIONS TO EAGLES OR WHO SOME OF OUR MEMBERS HAVE
HEARD OF. The list is not exhaustive. The intent is to provide a starting point for those of us looking for solutions. THESE ARE NOT RECOMMENDATIONS! Some of these doctors have worked for some members, but not others. Please use your own judgement when determining which doctor to use.

Alaska:
•Dr Donald Endres, ENT/ Head & Neck Surgeon. Geneva Woods ENT Associates, Inc., 3730 Rhone Cir # 203, Anchorage. 907- 563- 3515

Arizona:
•Dr John Milligan, Arizona Otolaryngology Consultants, Phoenix 602- 264 -4834, http://www.aocphysicians.com (another possible doctor there is Dr Peter Weisskopf, Neurology)
•Dr Matthew Neal, Mayo Clinic, Phoenix - https://www.mayoclinic.org/biographies/neal-matthew-t-m-d/bio-20322389

California:
•Dr Hussein Samji, Camino ENT Clinic, San Jose 408- 227- 6300 http://www.caminoent.com/professionals/drhussein-samji-camino-ent.html (one of the most experienced ES surgeons in the US, does external surgery.)
•Dr William Lewis, ENT of Los Gatos, Los Gatos 408- 395- 6121
•Dr Andrew Goldberg, UCSF, San Francisco 415- 353- 2603 http://ohns.ucsf.edu/?=facprofile/4
•Dr G Lekovic, House Ear Clinic, Los Angeles 213- 483- 9930 http://www.houseearclinic.com/lekovic (also in Orange County, see website)
•Dr Dinesh Chhetri, UCLA, Los Angeles (ENT/ Otolaryngologist, Head and Neck Surgeon) https://www.uclahealth.org/dinesh-khatri-chhetri
•Dr Avraham Mendelsohn, Los Angeles https://www.uclahealth.org/avraham-mendelsohn
•Dr Gerald Berke, Los Angeles, UCLA Medical Center 310- 794- 8634 (has reportedly done ES surgery, but not on any forum members that we know of) https://www.uclahealth.org/provider/gerald-berkemd
•Dr Henry Chen, Los Angeles, Cedars-Sinai 1- 800- 233- 2771 http://bio.csmc.edu/view/8040/chenhen.aspx (doesn’t have a lot of experience with Eagles surgery, but did a successful revision surgery on one member)
•Dr Bruce Gewertz, Los Angeles, Cedars Sinai 1- 800- 233- 2771 http://bio.csmc.edu/view/3581/Bruce-L-Gewertz.aspx
•Dr. Ryan Osborne - https://ohni.org/los-angeles-ent-doctors/
•Dr Christopher Yian, Orange County ENT, Irvine/ Laguna Hills 949- 305- 8000/ 949- 679- 9000 http://www.memorialcare.org/apps/docfinder/provider_detail.cfm?site=S&phys_id22472
•Dr Dennis Crockett, Mission Viejo, http://www.hnaoc.com/dennis-crockett-md-faap-facs.html 949- 396- 3110
•Dr Christopher Duma, Newport Beach, Hoag Hospital, (was mentioned by a member, but we don’t know how much experience he has)
•Dr Brendan Gaylis, Scripps Clinic, Torry Pines, La Jolla 1- 800- 727- 4777 http://www.scripps.org/physicians/4128-brendangaylis-md-facs

Connecticut:
•Dr Eaton Chen, ENT/ Otolaryngology, New Haven 203- 785- 2593
•Dr Benjamin Judson, Southern New England ENT, Smilow Cancer Centre at Yale https://medicine.yale.edu/surgery/otolaryngology/faculty/benjamin_judson-4.profile

Florida:
•Dr Jeffrey Scott Magnuson, Florida Hospital Celebration (Has done intra-oral robotic surgery, on member pinkeagle)
https://www.adventhealthcancerinstitute.com/meet-our-cancer-team/j-scott-magnuson
•Dr Dzigielewski, UF Health, ENT, Shands Hospital, Gainsvile 352- 265- 0920 www.ufhealth.org/peter-dziegielewski (does intraoral surgery, wouldn’t help one member)
•Dr Geoffrey Young, Mayo Clinic 4500 San Pablo Rd S, Jacksonville 32224
(904) 953-2000
•Dr Phillip Pirgousis, Mayo Clinic, 4500 San Pablo Rd S, Jacksonville 32224
(904) 953-2000
•Dr Gilberto Alemar, Cleveland Clinic, Weston 954- 659- 5786 (has done many ES surgeries, but other doctors at the Cleveland Clinic don’t believe in vascular ES, so we don’t know if he does) https://my.clevelandclinic.org/staff/4109-gilberto-alemar
•Dr Raam Lakhani, Watson Clinic, Bella Vista Building, Lakeland 863- 680- 7468 https://www.watsonclinic.com/physicians/raam-s-lakhani.html
•Dr David Arnold U of Miami Health Systems, Miami 305- 243- 4000 (mentioned by one member but don’t know how surgery went, successful surgery with another.) http://uhealthsystem.com/doctots/profile/1288

Georgia:
•Dr. Guy Petruzelli Memorial Health University Medical Center, Savannah, 912- 350- 2299, 4700 Waters Ave, Savannah, https://memorialhealth.secure.ehc.com/physicians/?accepted_safe_harbor=true&lastName=P

Hawaii:
•Dr Scott Newman, KaiserPermanente, Wailuku Maui 808- 243- 6000 (only takes Kaiser patients)
•Dr Lawrence Burgess, Honolulu (did intra-oral surgery, but just broke tip off, so check he would remove more & smooth tip)

Idaho:
•Dr Jeff Burry, Valley ENT, Lewiston 208- 746- 0193 http://valleyentgroup/providers/index.html

Illinois:
•Dr Jason Cundiff, Crystal Lake (Does intra-oral and external surgery) http://jasoncundiff.com/
•Dr Miloro , University of Illinois, Chicago 312- 996- 7640 http://hospital.uillinois.edu/Find_a_Doctor/Michael_Miloro.thm
•Dr Michiel Bove, Northwestern Medical Group, Chicago 312- 695- 8182 https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=16846
•Dr Urjeet Patel, Northwestern Medical Group, Chicago 312- 695- 8182
https://www.feinberg.northwestern.edu/faculty-profiles/search.html?q=DR+Urjeet+Patel&x=4&y=6

Indianapolis:
•Dr Joseph Brigance IU Health University Hospital, Indianapolis 317- 948- 3226 https://www.md.com/doctor/joseph-brigance-md
•Dr Luke Phillippsen, Muncie Otolaryngology, Muncie 765- 484- 2172 http://muncieent.com/staff.html

Iowa:
•Dr Douglas van Dele, ENT, University of Iowa Hospitals and Clinics, Iowa City https://uihc.org/douglas-van-dele (mentioned by Hawk87)

Kansas:
•Dr Eric Purdom, NE Kansas Facial Plastic and ENT 785- 539- 3504
https://www.manhattansurgical.com/ear-nose-and-throat.html
•Dr Keith Sale, KU Medical Centre , Kansas City 913- 588- 6701 (mixed results)
http://www.kumc.edu/school-of-medicine/otolaryngology/about-the-department/faculty-and-staff/faculty/keith-sale.html

Kentucky:
•Dr Bumpous, U of L physicians, Louisville 502- 588- 6000 http://www.uoflphysicians.com/1508846528-jeffrey-bumpous

Louisiana:
•Dr Daniel Nuss, Lake Head and Neck Center, Baton Rouge, Mary Bird Perkins Cancer Centre (Skull base surgeon)
https://ololrmc.com/site-search/search-results?q=dr daniel nuss
https://marybird.org/doctor/nuss/

Maryland:
•Dr Elizabeth Guardriani, University of Maryland Medical Centre, Baltimore 1- 866-408- 6885 http://www.medschool.umaryland.edu/profiles/Guardiani-Elizabeth/
•Dr Rodney Taylor, University of Maryland Medical Centre, Baltimore 1- 866- 408- 6885
http://www.medschool.umaryland.edu/profiles/Taylor-Rodney/

Massachusetts:
•Dr Timothy Anderson, Lahey Clinic 744- 781- 8467 https://physicians.lahey.org/details/1565/timothy-anderson-otolaryngology_ear_nose__throat-burlington
•Dr Timothy Osborne, Boston University Medical Center, 617- 638- 4350 https://www.bmc.org/about-us/directory/doctor/timothy-m-osborn-md-dds-facs
•Dr Donald Annino, Brigham and Womens, Boston (surgeries on several members) https://physiciandirectory.brighamandwomens.org/details/1975/donald-annino-jr-otolaryngology_ears_nose_and_throat-boston

Michigan:
•Dr Candice Colby-Scott (co-wrote a research paper on ES/ SHCS, but told one member she’s not doing surgery any more)
https://health.usnews.com/doctors/candice-colby-scott-678345
•Dr Gregory Artz, Grand Rapids ENT, https://grentpc.com/
•Dr Steven Chang, Henry Ford Hospital, Detroit, 800- 436- 7936 https://www.henryford.com/physician-directory/c/chang-steven
•Dr Carlos Ramierez, St John Providence 586- 779- 7610 https://amomfs.com/carlos-a-ramirez%2C-md-dds
•Dr Dennis Borjab, Michigan Ear Institute 248- 865- 4444 http://www.michiganear.com/ear-doctor-dennis-bojrab-md.html

Minnesota:
•Dr Wm Garvis, Abbott Hospital, Minneapolis 612- 871- 1144 www.entsc.com
•Dr Frank Ondrey, University of Minneapolis Medical Center 612- 625- 7400 (now does external surgery, did intra-oral in the past & just broke the tip off, so ensure he’ll take more off the styloid) https://www.ent.umn.edu/bio/ent-faculty/frank-ondrey

Missouri:
•Dr Matthew Conoyer, Midwest ENT Centre, St Peters 636- 441- 3100 https://entmidwest.com/our-practice/dr-j-matthew-conoyer/

Nebraska:
•Dr Dan Lydiatt, University of Nebraska Medical Centre, Methodist Clinic . Clinic 402- 559- 1700, Office 402- 559- 7775, Methodist Clinic 402- 354- 5890 https://www.md.com/doctor/daniel-lydiatt-md
•Dr Coughlin, Methodist Hospital, Omaha (Head and Neck Oncologist, has done external skull base surgery 7-10 times, and steroid injections) https://www.mhsdoctors.com/physicians/11116003

Nevada:
•Dr Manthei, Nevada Eye and Ear 702- 896- 6043 www.nevadaeyeandear

New York:
•Dr Bradley Simmons, Fingers Lake ENT, Canandaigua, 585- 396- 3110 www.flent.com
•Dr Yosef Krespi, Lenox Hill Hospital, Manhattan 212- 262- 2929 https://www.northwell.edu/find-care/find-a-doctor/otolaryngology/dr-yosef-krespi-md-11355020
•Dr Peter Constantino, Lenox Hill Hospital, Manhattan 212- 262- 2929 (mentioned by a member, but don’t know if he’s done any surgeries)
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
•Dr Mark deLacure, NYU, New York City (mentioned by a member, don’t know if he’s done any surgeries) https://nyulangone.org/doctors/1326049453/mark-d-delacure

North Carolina:
•Dr Donna Sharpe , Duke, Durham 919- 220- 2020 https://www.dukehealth.org/
•Dr Richard Gillespie, Monroe 704- 289- 8220 http://richardgillespie.md.com/
•Dr Matthew Ellison, Duke, Raleigh 919- 862- 5730 (recommended by one member although didn’t diagnose her calcified ligaments as ES)

Ohio:
•Dr Josef Scharpf, Cleveland Clinic, Main Campus 216- 444- 8500 (not mentioned by a member, but has ES as a speciality on his bio, Otolaryngologist and brain surgeon.)
https://my.clevelandclinic.org/staff/5480-joseph-scharpf
•Dr Lamarre, Cleveland Clinic Head and Neck Institute, Main Campus https://my.clevelandclinic.org/staff/17359-eric-lamarre
•Dr Brian Burkey, Cleveland Clinic, 216- 444- 6691 ( Otolaryngologist/ ENT, Head and Neck surgeon. At least one successful surgery, but only believes in Classic ES, not vascular) https://health.usnews.com/doctors/brian-burkey-12088
•Dr Lorenz, Otolaryngology, Cleveland Clinic Main Campus https://my.clevelandclinic.org/staff/4447-robert-lorenz
•Dr Eugene Choi, Ohio State University, Columbus 614- 366- 3687 (external, successful surgery, but I couldn’t find any record of him at this facility & previous web address for him no longer valid, see Dr Old below. Here’s the Otolaryngology website: https://wexnermedical.osu.edu/departments/otolaryngology/team )
•Dr Matthew Old, Otolaryngology, Ohio Sate University, James Cancer Hospital, Columbus (one surgery that we know of)
https://cancer.osu.edu/find-a-doctor/search-physician-directory/matthew-o-old
•Dr Arick Forrest, Ohio Sate University 614- 366- 3687 (has done several successful surgeries) https://wexnermedical.osu.edu/find-a-doctor/l-arick-forrest-md-2677
•Dr Richard Nelson, Toledo ENT, Maumee 419- 578- 7555 http://www.toledoent.com/rjnelson.htm
•Dr Brad deSilva, OSU Wexner Hospital, https://wexnermedical.osu.edu/find-a-doctor/brad-desilva-md-22675

Oklahoma:
•Dr Greg Kempl, Stephenson Cancer Centre/ OU Physicians Otorhinlaryngology Clinic, Oaklahoma City 405- 271- 7559 (otolaryngologist, need a physicians referral) https://stephensoncancercenter.org/Patients/Clinics-Services/Head-and-Neck-Cancers/Treatment-Team/greg-krempl-md

Oregon:
•Dr Erik Dierks, Head and Neck Surgical Assoc., Portland 503- 244- 1371 https://head-neck.com/eric-dierks/
•Dr Andrew Patel, PDX ENT, Pacific Northwest Portland 503- 222- 3638 (Otolaryngologist) https://pdxent.com/
•Dr Schindler, Oregon Health and Science University. Has apparently done 18 sucessful surgeries, intra-oral and external.

Pennsylvania:
•Dr Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members) https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html
•Dr Jason Newman, Dr Jason Lee U of Pennsylvania, Philadelphia (head and neck, skull base surgeon) https://www.pennmedicine.org/providers/profile/jason-newman
•Dr Kevin Leahy U of Pennsylvania, Philadelphia https://www.pennmedicine.org/providers/profile/kevin-leahy
Also another doctor at U of Pennsylvania, Philadelphia, doesn’t want to be named, but contact scheduler Lindsay Flood 215- 829- 5180/ 800- 789- 7366, ask for her & say you have ES and would like scans to be reviewed by the appropriate surgeon.
•Dr Carl Snyderman, Uni of Pittsburgh 412- 647- 2100 (Otolaryngologist, brain surgeon, neurologist, skull base. Diagnosed one member) http://www.neurosurgery.pitt.edu/centers-excellence/cranial-base-center/carl-snyderman
•Dr Roger Levin, Harrisburg https://health.usnews.com/doctors/roger-levin-535963
•Dr. Raj Dedhia, 3400 Spruce St, 5 Ravdin, Philadelphia, (215) 662-2777

South Carolina:
•Dr Eric Lentsch, Medical University of South Carolina, Charleston 843- 792- 3531 (Otolaryngologist, Head and Neck Cancer) https://muschealth.org/muscapps/providerdirectory/lentsch-eric

Tennessee:
•Dr Mark Williams, Southern Hills, Nashville 615- 832- 2200 http://entson.net/contact-us/

Texas:
•Dr Donald T Donovan, Baylor College of Medicine 713- 795- 5900 (external surgery, successful on one member, but not helpful to another) https://www.bcm.edu/people/view/donald-donovan-md-facs/b16ef3bb-ffed-11e2-be68-080027880ca6
•Dr Newberry, SAMCC Army Hospital, San Antonio
•Dr Teresa Chan-Leveno, University Of Texas Southwestern Medicine Centre, Dallas 214- 645- 8898 (Otolaryngologist) https://utswmed.org/doctors/teresa-chan-leveno/
•Dr Agan, University Of Texas Southwestern (says she has had success with ES surgery- one member saw her but opted to travel to someone more experienced) https://utswmed.org/doctors/ashley-agan/
•Dr Lawrence Weprin, Dallas (Otolaryngologist) http://www.entnorthtexas.com/Pages/DocView.aspx?ProvID=10977
•Dr Richard Ragsdale, Presbyterian Hospital, Allen 972- 747- 4646 (ENT/ Otolaryngologist, successful surgery reported) https://health.usnews.com/doctors/richard-ragsdale-590840

Utah:
•Dr Marshall Smith, Salt Lake City (Successful thyroid cartilage surgery on ramblinman)
•Dr Pramrod Sharma, University of Utah & Huntsman Cancer Institute, Salt Lake City. Neck tumour & Skull Base surgeon, does external surgery, has done about 20.

Virginia:
•Dr Stephen Early, University of VA, Charlottesville 434- 243- 6098 (Successful surgery reported, but may only be taking pediatric patients now) https://med.virginia.edu/otolaryngology/faculty/stephen-v-early-m-d/
•Dr John Sinacori, EVMS Otolaryngology, 600 Gresham Dr Suite 1100, Norfolk 757- 388- 6200

Washington:
•Dr Neil Futran UW Medical Centre, Seattle 206- 598- 4022 (successful intra-oral surgery) http://www.uwmedicine.org/bios/neal-futran

Wisconsin:
•Dr Robert DeFatta, Chippewa Falls (says he’s done at least 5 ES surgeries, but not on any members that we know of) https://defattaent.com/
•Dr. S Nalwa previously at St. Marys, Janesville, seems to have moved on.

3 Likes

Thank you for this list!

My doctor was Dr Arnold at the University of Miami. I was diagnosed with ES by another doctor and referred to Dr Arnold for surgery. The surgery was successful but I still have nerve damage in my trigeminal nerve. I doubt it will ever fully healed but I am no long at deaths door. I would recommend Dr Arnold if someone is thinking of surgery in the south Florida area.

Thanks ann; he’s on there, I’ve added that a member had successful surgery with him. I still have some TN pain post surgery, controlled well with medication, I can only presume the nerve was damaged by the styloid. I know that it’s better than it was before & at least not getting worse like it was- hope yours does too…

Thank you for update.
Just want to mention another specialist in New York City familiar with ES.
Dr. Catherine Sinclair, MD, Head and Neck surgeon at Mount Sinai Hospital.
She finally was able to confirm my ES at the appointment couple months ago. She proposed surgery with optional extraoral or intraoral approch, and sounds to be experienced with both. With intraoral approch she said that she may be able to keep tonsil and go around it.
Anyway, I’m gonna take second opinion before I go forward with surgery.

Mr. Nikolay,
I generally vote for the external surgery because all of the styloid & s-h ligament can be removed which helps prevent regrowth/re-calcification. The intraoral approach provides less access to the area.

A second opinion is an excellent idea! Hope you can find someone near you. If not a phone consultation w/ Dr. Samji, Dr. Cognetti or Dr. Milligan would also do the trick.

Mr. Nikolay,
I have an ENT surgeon I’m working with in NYC at Weill Cornell. He is a known head/neck surgeon but he has only done 3 ES surgeries in his career. He would want to do the intraoral approach and said that he could do it would out a problem. I am now waiting for Dr. Cognetti to review my scans, then to get back to me. (fingers crossed)

My PCP did a search for doctors who are know for ES surgeries and Dr. Sinclair did not come up.

All the best,
Teresa

iIsaiah_40_31, Teresa.
I’m going to PA tomorrow. It’s sounds like Dr Cognetti is one of the most experienced ES surgeon on East Coast verified by this community and has lot of successful styloidectomy surgeries. That what I was looking for. Thanks a lot for advise.

I have partially calcified ligaments on both sides, so I think surgical approach is not in doubt in this case.
On the other hand, my left styloid (angled, 60mm long) somehow almost sticking out on the side of my tonsil, I can fill it and even bend it with my tong. So it may be easy to trace it with intraoral. Also have some old stones in my tonsil that maybe make sense to remove. I hope tomorrow Dr Cognetti will help to clarify all these things.

2 Likes

Mr. Nikolay,

Dr. Cognetti is very experienced. I’m sure you’ll come away from your appointment feeling much more clear about your surgical choices & what needs to be done to alleviate your ES pain & symptoms. Having both an elongated styloid & calcified ligaments indicates to me that you will have greater success w/ external surgery as both can be accessed that way. Intraoral surgery doesn’t provide for much ligament access.

Does anyone have personal experience with Texas surgeons? If so, any details are helpful. Thanks.

Has anyone had experience with Dr. Chheda at Shands Hospital in Gainsville Florida? I already have a preliminary diagnosis from and ENT and have been referred to Dr. Chheda. Thanks in advance.
~ Amy

Hi gr8fulgirl777 - Dr. Chheda is not listed on our US Doctors’ List, therefore, I will speculate that you’re the first person to talk about him in a post & perhaps to see him. If you get no replies to your question, and you do go see him, we will rely on you to let us know if your experience was positive & supportive or something less than that.

Remember that going into an appointment w/ the following will serve you well:
• a list of your basic symptoms (not every little thing you think might be related to ES)

• an understanding of the full definition of ES (many doctors limit the definition to elongated styloids) - Definition: Elongated styloid process(es) OR calcified stylohyoid ligaments OR a combo of the two. Variations on that theme can also be normal length styloids that are extra thick, twisted, pointed or curved which cause ES symptoms.

• any questions you have about his surgical approach for ES i.e. outpatient, inpatient, type of surgery he does, recovery time expected, etc.

•being informed about the two types of surgeries used to help “cure” ES symptoms (introral - via the throat or external - via the neck). In general, I am more in favor of the external approach because I feel it’s safer (vascular tissues & nerves can be seen & monitored during surgery so they can be moved out of the way to help prevent damage) & allows the styloid process to removed to the skull base & the stylohyoid ligament to be removed to the hyoid bone if necessary). Intraoral surgery provides little if any visibility to nerves & vascular tissues & w/o multiple incisions in the throat, does not allow for much more than shortening the styloid process but not removing it completely. It also provides little or no access to the stylohyoid ligament if it’s calcified as well.

You may have thought of other questions you’d like to ask, I just wanted to give you some basics.

I hope this is all helpful.

:slightly_smiling_face:

Thank you for the email,

I appreciate the feed back. I will keep LWES informed as to how my visit goes.

Amy

Thank you! We will look forward to hearing what you learn.