New to craniocervical instability (CCI)? Start here.

This guide is not all-encompassing. If you have comments or corrections, write to [email protected] and I will adjust it.

This guide does not need to be read in order, so feel free to skip to the section relevant to you.

What's in this guide

• What CCI is: how it can cause symptoms, and the overlap with ME/CFS
• Where to find other patients: Reddit and Facebook groups
• Providers by location: a quick index
• Step 1, imaging: contact the specialist first, which scans to get, who should read them, and a collar trial if you can't get imaging yet
• Step 2, evaluation: telehealth and in-person specialists
• Step 3, treatment: PT (remote and in person), NUCCA and AO, injections and surgery, with questions to ask
• If something goes wrong, why CCI is still controversial, and how to help fill the gaps

What is CCI

What it is. Craniocervical instability (CCI) means the ligaments that hold your skull onto the top two vertebrae (C1 and C2) are too loose, so the joints there move more than they should. Atlantoaxial instability (AAI) is the same kind of problem between C1 and C2.

Why it can cause so many symptoms. The brainstem and the top of the spinal cord pass through this junction. When the joints shift too much, they can bend or compress the brainstem and upper spinal cord (Henderson et al. 2017), and some clinicians think this also affects blood and spinal fluid flow.

The ME/CFS link. Some people diagnosed with ME/CFS turn out to have CCI or related problems where the skull meets the neck. In one Swedish clinic's study, 100 of 125 severe ME/CFS patients who had a neck MRI showed craniocervical obstructions, a broader finding than CCI, though without a matched control group it's unknown how many ME/CFS cases CCI actually explains (Bragée et al. 2020).

Before you start:

• Not medical advice. I'm not a clinician, and being listed here is not an endorsement.
• Every treatment here, from PT to injections to fusion, rests at most on case reports and case series, usually published by the clinic doing the treatment. There are no placebo-controlled randomized trials yet. That doesn't mean nothing works. It means expect sales pitches, ask hard questions and get a second opinion.
• New or fast-worsening weakness, trouble swallowing or breathing, or passing out when you move your head: go to the ER.

Where to find other patients

• Reddit: r/cervical_instability and r/PICL
• Facebook groups (all private):
  • Upper Cervical Instability Awareness (about 59K members)
  • Craniocervical Instability (about 11K members)
  • Craniocervical instability - Regenexx PICL procedure (about 2.6K members, for people who have had or plan PICL)

Providers by location with experience in CCI

Details for each are in the step shown. "Can do diagnostics" means a physician who evaluates patients for CCI, or an imaging or chiropractic practice that performs or interprets motion imaging.

Online / telehealth (anywhere)

• Dr. Vicenç Gilete: neurosurgery teleconsult, can do diagnostics (Step 2)
• Centeno-Schultz Clinic: telemed CCI evaluation, can do diagnostics (Step 2)
• Susan Chalela, Todd Ball, Wendy Wagner, Dr. Mike Makher: remote PT (Step 3)
• Dr. Sasha Blaskovich: virtual consults, can do diagnostics (Step 1)
• Dr. Evan Katz, Dr. Doug Lightstone: analysis of DMX films you already have, can do diagnostics (patient-reported, Step 1)

United States

• Colorado: Centeno-Schultz Clinic, Broomfield (injections, can do diagnostics, Step 3); Dr. Evan Katz (DMX, can do diagnostics, Step 1)
• DC: Dr. Faheem Sandhu, MedStar Georgetown (neurosurgery, can do diagnostics, Step 2); Cari Simon, DPT, Release Physical Therapy (in-person PT, Step 3)
• Florida: Dr. Joel Franck, Oldsmar (neurosurgery, can do diagnostics, Step 2); Dr. Ross Hauser, Fort Myers (injections, can do diagnostics, Step 3)
• Georgia: Dr. Christopher Williams, Atlanta (injections, Step 3); Dr. Doug Lightstone, Atlanta (DMX, can do diagnostics, Step 1)
• Illinois: Wendy Wagner, PT, Chicago (PT, Step 3); Dr. Dickhut, central Illinois (DMX, can do diagnostics, Step 1)
• Maryland: Dr. Fraser Henderson, Upper Marlboro (neurosurgery, can do diagnostics, Step 2)
• Massachusetts: Dr. Daniel Sheehan, Cape Cod (injections, Step 3)
• Michigan: Dr. John Santa Ana (injections, Step 3)
• New York: Dr. Paolo Bolognese, Long Island (neurosurgery, can do diagnostics, Step 2); Dr. Scott Rosa, Rock Hill (Atlas Orthogonal chiropractor with upright MRI workup, can do diagnostics, Step 3)
• Oregon: Dr. Mike Makher, Hillsboro (PT, mostly remote, Step 3)
• Rhode Island: Dr. Petra Klinge, Providence (neurosurgery for tethered cord and Chiari, Step 2)
• South Carolina: Dr. Sunil Patel, Charleston (neurosurgery, can do diagnostics, Step 2); Susan Chalela, Charleston (PT, Step 3)
• Utah: Dr. Richard McMurtrey (injections, Step 3)
• Washington: Dr. Otoño Silva, Bellevue (injections, Step 3); Dr. Sasha Blaskovich, Bellingham (imaging, can do diagnostics, Step 1); Dr. Stephen Maglente, Vancouver (DMX, can do diagnostics, Step 1)

Canada

• British Columbia: Dr. Sasha Blaskovich, Langley (imaging and virtual consults, can do diagnostics, Step 1)
• Ontario: Dr. Imrat Sohanpal, Toronto (injections below C2, Step 3)

Europe

• Belgium: Dr. Anita van Domselaar, Relieve Clinic (injections, Step 3)
• Germany: Dr. Andreas Schmitz, Düsseldorf (neurosurgery, artificial ligament surgery, can do diagnostics, Steps 2 and 3)
• Hungary: Dr. Agnes Stogicza, Budapest (injections, can do diagnostics, Steps 2 and 3)
• Lithuania / Switzerland: Dr. Rolandas Janusas (injections, Step 3)
• Spain: Dr. Vicenç Gilete, Barcelona (neurosurgery and regenerative injections, can do diagnostics, Step 2); Dr. Bartolomé Oliver, Barcelona (neurosurgery, can do diagnostics, Step 2)
• Switzerland: Dr. Alexander Spiessberger, Zurich (neurosurgery, can do diagnostics, Step 2)

Australia and New Zealand

• New South Wales: Dr. Prashanth Rao, Sydney area (neurosurgery, can do diagnostics, Step 2); A/Prof Vahid Mohabbati, Sydney (injections, Step 3)
• New Zealand: Dr. Fraser Burling, Auckland (rheumatology and injections, Step 2)

Asia

• India: Dr. Atul Goel, Mumbai (neurosurgery, can do diagnostics, Step 2)
• Singapore: Dr. Prem Pillay, Mount Elizabeth Medical Centre (neurosurgery and injections, can do diagnostics, Steps 2 and 3)

Step 1: Get the right imaging, read by the right person

Contact the specialist before you book any scans. Most CCI specialists want specific scans done a specific way (certain positions, views or facilities), and some require them before your first visit.

• Dr. Henderson's office requires specific imaging and has patients without suitable local equipment get it in Maryland.
• Centeno-Schultz wants DMX or upright flexion/extension MRI before their telemed visit.
• Ask for the exact order (some send a written script) and whether outside facilities are OK, so you don't pay for, and get radiation from, the wrong scan.

Which scans. CCI is about movement, so standard lying-down imaging usually misses it. What specialists ask for depends on the pathway:

• If surgery might be on the table: upright (weight-bearing) MRI of the neck in flexion and extension, plus a CT with your head turned about 90 degrees left and right. This is what Dr. Henderson's published decision tree calls for. Dr. Gilete accepts upright MRI or upright cone-beam CT covering neutral, flexion, extension and rotation.
• If you're heading toward injections: Centeno-Schultz wants DMX (a video x-ray of your neck moving, including side bending) or upright flexion/extension MRI. Dr. Centeno has said upright MRI can miss C1-C2 overhang, which shows up on side bending. Caring Medical (Hauser) does DMX and upright cone-beam CT in house.

Why the split? Partly it's what each team is deciding. Surgeons need to see whether your brainstem or spinal cord is being bent or squeezed and exactly where the bones sit, while injection clinics want to see which joint slips and in which direction. Partly it's access, since DMX is cheap and widely available and upright MRI scanners are rare. No study has compared the two head to head.

Normal ranges are still being worked out for both, and a very sensitive test can flag ordinary hypermobility as instability, so a positive scan on its own isn't a diagnosis. Even Centeno-Schultz treats imaging as one of seven criteria.

Who reads it matters as much as the scan. Have your images read by someone experienced with CCI in connective tissue disorders, not only a general radiologist.

• Under-reading: routine measurements were built to catch obvious, trauma-type instability and can miss subtler findings, so a standard report may say "normal."
• Over-reading: readers at the other extreme may flag findings that also show up in healthy hypermobile people.
• The specialists in Step 2 review images themselves.
• Always get the actual image files, not just the written report.

Getting a referral (US). Upright MRI needs a referral, even if you pay cash. One patient says most DMX sites examine you themselves and decide, though some want a referral, so call first. RadiologyAssist (a commercial service, not affiliated with us) offers consults with doctors who can write an imaging referral if they think it's appropriate.

Where to get dynamic imaging

DMX (digital motion x-ray)

DMX is usually done at a chiropractor's office. Machines and views vary, so check with your treating doctor that a site is acceptable. The r/cervical_instability moderator recommends PostureRay analysis software, which gives more measurements (not necessarily more accurate ones). Patients report paying about $500-1,500 for the scan in the US (2023-2025), and the measurement report is often a separate charge.

Megathread map: DMX sites and injection doctors, still being added to. Google map

• Dr. Evan Katz, DC, Colorado. Often used by Centeno-Schultz patients. Uses PostureRay. Patients report he'll analyze DMX films taken elsewhere (one paid a couple hundred dollars in 2024). katzchiropractic.com | Megathread interview
• Dr. Doug Lightstone, DC, Atlanta, GA. Uses PostureRay. One patient reports he'll analyze films taken elsewhere by email or telehealth. Site
• Dr. Dickhut, central Illinois. Recommended by a patient, though the megathread's author notes they use a different analysis software from PostureRay. Site
• Dr. Stephen Maglente, DC, DMX of Vancouver, Vancouver, WA. Focuses on DMX for CCI. dmxofvancouver.com
• Dr. Sasha Blaskovich, DC, Whiplash and Injury Clinic, Langley, BC and Bellingham, WA. Motion x-ray, instability evaluation and virtual consults. A good option for Canadians. Rules on motion x-ray differ between British Columbia and Washington State, so ask which office performs it. whiplashclinic.com

Step 1B: Can't get imaging yet? Discuss a collar trial with your doctor

If upright imaging is out of reach for now, some CCI surgeons use a short collar trial as a screening step; discuss with your doctor whether it makes sense for you. Holding your upper neck still for a few days roughly mimics what a stable neck would feel like. If some symptoms clearly ease, they likely depend on neck movement, which fits CCI and makes your neck worth imaging. Symptoms that don't change probably have another cause, though a short negative trial doesn't rule CCI out.

It's a clue, not a diagnosis: other neck problems, like strained muscles or irritated joints, can also improve in a collar, and no surgeon or injection clinic will treat you based on a collar trial alone. A clear response, documented in a symptom diary, is useful evidence when you ask your doctor for an imaging referral. If you're already weighing surgery, the trial also previews the trade-off: which symptoms might improve, and what it's like to lose neck movement.

One CCI neurosurgeon's clinic publishes a collar trial protocol you can share with your doctor: Dr. Gilete's protocol

Step 2: Get evaluated

Remote / telehealth

• Dr. Vicenç Gilete, neurosurgeon, Barcelona. Zoom consult reviewing your uploaded imaging. His site lists €300 (30-min preliminary), €450 (1-hour evaluation), €750 (with written report). Teleconsult info
• Centeno-Schultz Clinic, Broomfield, CO. After DMX or upright MRI (see Step 1), a telemed visit where they "type" your CCI. If you're an injection candidate, you fly in. As with any clinic that also does the treatment, consider a second opinion. CCI practice

In person, US neurosurgeons (known for evaluating CCI in EDS/hypermobile patients)

• Dr. Fraser Henderson Sr., Metropolitan Neurosurgery Group, 1401 Mercantile Ln, Upper Marlboro, MD. (301) 557-9049. Lead author of the 2024 fusion study cited below. Patients say he's out of network, so ask how billing works. His "what to bring" page shows an older address, so call to confirm. Site
• Dr. Paolo Bolognese, Chiari EDS Program, Mount Sinai South Nassau, Long Island, NY. Patients describe a written intake that's reviewed before you're offered a visit, with waits of several months just for the record review. He also does a smaller pre-fusion operation, placing metal rods in the skull to stabilize it and preview what a fusion would do. If you want a staged approach, ask whether a trial stabilization is offered before fusion. His program published its screening process in 2026: of 347 patients evaluated, 95 had fusion, and 86% of them reported being satisfied (Bloom et al. 2026). Program page
• Dr. Petra Klinge, Brown University Health / Rhode Island Hospital, Providence, RI. Treats tethered cord, Chiari and spinal fluid problems, which often come with CCI, rather than CCI itself. Her published work is on those conditions, not CCI fusion. Profile
• Dr. Sunil Patel, Chair of Neurosurgery, MUSC, Charleston, SC. Academic center that takes insurance. Two patients were told in early 2025 he wasn't taking new patients, so call first. Profile
• Dr. Faheem Sandhu, Director of Spine Surgery, MedStar Georgetown University Hospital, Washington, DC (also sees patients in Chevy Chase, Clinton and Prince Frederick, MD). Lists disorders of the craniocervical junction among his interests, and has published case series on EDS patients, including craniocervical stabilization after failed Chiari surgery (Zhao et al. 2022, Rock et al. 2023). Academic center that takes insurance. Profile
• Dr. Joel Franck, Oldsmar, FL. Focuses on whiplash and trauma-related craniocervical problems. I couldn't find any published CCI research or outcomes from him, so ask him for his own results.

In person, Europe

• Dr. Gilete, Teknon Hospital, Barcelona. His team can book upright imaging on the same trip as the consult. His site also lists regenerative treatments (PRP, stem cells and prolotherapy) but not which neck levels he injects or what imaging guidance he uses, so ask. Regenerative medicine page I could not find published outcome data from his clinic; ask for it.
• Dr. Bartolomé Oliver, neurosurgeon, Neuroinstitut, Teknon Medical Center, Barcelona (the same hospital as Dr. Gilete). His Chiari surgery site lists craniocervical instability among his specialties and offers video consults. Patients on r/cervical_instability report he diagnosed their CCI and AAI with a standing cone-beam CT (a 3D x-ray) in flexion, extension and side bending, and offered either surgery or a 15-day physiotherapy program. I could not find published CCI results from him, so ask for his own, including revision rates. chiarisurgery.com
• Dr. Andreas Schmitz, neurosurgeon, Privatklinik Bel Etage, Düsseldorf. Private clinic (self-pay). Creates artificial ligaments to stabilize the neck instead of a full fusion, sometimes with a plate at lower levels,, and describes the surgery as reversible because the original ligaments are left in place. It's new and no results have been published; two patients have posted positive accounts (see here and here). clinicbeletage.de
• Dr. Alexander Spiessberger, neurosurgeon, Prodorso Zentrum für Wirbelsäulenmedizin, Zurich. Published a comparison of craniocervical fusion results in EDS patients while in New York (Spiessberger et al. 2020) and research on normal CCI imaging ranges at Cleveland Clinic (Gordillo et al. 2024). prodorso.ch
• Dr. Agnes Stogicza, PSI Pain Clinic, Budapest. Interventional pain physician (fellowship and faculty at the University of Washington). Treats CCI and whiplash injuries. Profile

In person, Australia and New Zealand

• Dr. Prashanth Rao, neurosurgeon, Mater Hospital (North Sydney) and Norwest Private Hospital (Bella Vista), also consults in Bowral and Camden, NSW. Lists craniocervical instability as an area of interest. He co-authored a 2023 study setting normal ranges for CCI measurements on upright MRI (Nicholson et al. 2023), and was senior author of a 2024 study of 21 EDS patients with CCI who wore a halo brace (a rigid frame fixed to the skull) before deciding on fusion; 16 went on to fusion (Bohra et al. 2024). Profile
• Dr. Fraser Burling, rheumatologist, Remuera, Auckland. Focuses on musculoskeletal medicine and Ehlers-Danlos syndrome, and spoke on prolotherapy at the EDS Society's 2024 conference. Patients on r/cervical_instability point New Zealanders to him but say they know little about which neck levels he treats, so ask. EDS Society profile

In person, Asia

• Dr. Atul Goel, neurosurgeon, Lilavati Hospital and Research Centre, Mumbai. A pioneer of surgery that fuses C1 to C2 for atlantoaxial instability (AAI). Patients on r/cervical_instability point to him for AAI, though none has reported being treated by him. Caveat: his view that Chiari malformation, syringomyelia (a fluid-filled cavity in the spinal cord) and basilar invagination are mostly caused by C1-C2 instability, and should be treated by fusing C1 to C2, is disputed. A University of Toronto editorial calls that one-cause, one-treatment approach "overly dogmatic" (Neurospine). Get a second opinion before any surgery. Profile
• Dr. Prem Pillay, neurosurgeon, Singapore Brain Spine Nerves Center, Mount Elizabeth Medical Centre, Singapore. Trained at Cleveland Clinic. A patient who spoke with him reports that he diagnoses with DMX, treats hEDS patients, works with a CCI-literate PT and a rheumatologist, and tries prolotherapy, PRP and PT before surgery. He doesn't offer bone marrow concentrate, because of Singapore's rules. One patient reports he offers transoral injections; ask about this directly, and ask for his outcome data. The price list that patient shared (2025, before tax, likely Singapore dollars) quotes S$5,000-10,000 for PRP in the clinic, plus S$9,000-15,000 in hospital fees for CT-guided injections, more for the transoral approach, and S$1,500-2,000 for sedation. Profile

Finding someone near you

Ehlers-Danlos Society directory, searchable by location. Providers list themselves and the Society doesn't vet them, and some listings are out of date, so treat it as a starting list. Directory

A note on board certification

Boards differ by specialty and country, and newer procedures like these aren't covered by any board exam. Lacking certification isn't automatically a red flag, and having it doesn't guarantee CCI experience. I haven't verified anyone's current status. Ask which board and whether it's current, then check: CertificationMatters (US) and your state medical board's license lookup. Before any injection or surgery, look up the clinician on the state physician profile or license lookup and ask about complications and litigation. Do this for every provider, not only the ones listed here.

Step 3: Treatment, from least to most invasive

1. Conservative care (where most people start)

The most useful free resource: the 2023 international expert consensus on physical therapy for upper cervical instability in hypermobile patients. Print it and hand it to any PT. Generic neck PT can make CCI worse. Russek et al., Frontiers in Medicine

PT, remote: exercise, posture and motor control. Most CCI rehab is gentle, gradual work on the deep neck muscles, posture and control, which works well over video. PT telehealth is usually limited to states (or countries) where the therapist is licensed, so ask before you book.

• Susan Chalela, MPT, Chalela Physical Therapy Institute for EDS/CCI, Daniel Island (Charleston), SC. Co-author of the consensus paper. Her site says telehealth works from anywhere, including other countries (cash pay, no hands-on work). chalelapt.com
• Todd Ball, PT, Physical Therapy on Demand (also known as Healthy Posture Club). Online program: 12 weeks of weekly coaching plus a video library, including an upper cervical instability program. Self-pay. Patients say it helped with posture and neck rehab. Ask whether the program is open to patients of any clinic. physicaltherapyondemand.com
• Wendy Wagner, PT, Wendy 4 Therapy, Chicago. In person or video. Also a co-author of the consensus paper. Site
• Dr. Mike Makher, PT, DPT, Pain & Performance Coach, Hillsboro, OR. Works with hypermobile patients. One patient in Europe has done remote PT with him for two years after trying several others. painperformancecoach.com

PT, in person: hands-on soft tissue work (a community list). An in-person PT can release the tight muscles guarding an unstable neck, with myofascial release or dry needling (a few patients say needling helped, including with headaches). Make sure they know about your CCI and skip any forceful neck manipulation.

• Cari Simon, DPT, Release Physical Therapy, 2134 L St NW, Washington, DC. Dry needling, Active Release Technique, myofascial release and laser. releasept.com
• Susan Chalela, MPT, Chalela Physical Therapy Institute, Daniel Island (Charleston), SC. Also sees patients in person (see her remote listing above). chalelapt.com

Seen someone good for this? Write to [email protected] with their name and city and I'll add them.

Other conservative care

• Collars: see Step 1B for a collar trial. For ongoing use, ask your clinician how long to wear one, since long use weakens the neck muscles.
• NUCCA or Atlas Orthogonal (AO): only with a specialist. Do not go to a regular chiropractor if you have or suspect CCI. Forceful neck manipulation can injure the ligaments that hold your head on and cause or worsen CCI. Many patients on r/cervical_instability trace theirs to an adjustment, and the PT consensus paper says to avoid aggressive neck manipulation. Practitioners describe NUCCA and AO as low-force upper cervical techniques with no twisting or popping (AO uses an instrument for a light, precise tap to the top vertebra). There is no controlled evidence in CCI; some patients report benefits. Tell them about your CCI before any adjustment.
  • Dr. Scott Rosa, DC, Rosa Clinic, Rock Hill, NY. Certified in the Atlas Orthogonal technique. Patients on r/cervical_instability describe a workup with upright flexion/extension MRI before and after his AO adjustment, and say he is very knowledgeable about CCI. One says it was the most helpful thing they've done for their CCI. It's expensive: patients report about $8,000 for the full workup (2024), and about CA$10,000 including the upright MRI and visits (2025). rosaclinic.com
  • NUCCA directory
  • Upper cervical chiropractor directory (covers other gentle techniques too)
  • US Atlas Orthogonal chiropractor directory, state by state, compiled by the Upper Cervical Instability Awareness group

2. Injections (prolotherapy, PRP, bone marrow concentrate)

Risks first. Before reading the clinic list, read what has been published about the risks of injections and surgery.

Regulatory status. None of these injections is approved by the FDA as a treatment for CCI. Platelet-rich plasma (PRP) and bone marrow concentrate are prepared from your own blood or marrow and used at the clinician's discretion; culture-expanded cell products (cells grown in a lab to increase the count) are not permitted in the US outside a clinical trial, which is why some clinics offer them offshore. See the FDA's consumer update on stem cell therapies.

Clinics disagree about which ligaments each technique can actually reach, so ask each one directly. Also ask what platelet concentration their PRP system produces, and whether extra procedures (like nerve blocks) are planned and billed the same day.

Before you book any injection:

• Ask about imaging guidance. For the top of the neck (C0-C2), the megathread and several doctors say the clinic should use C-arm fluoroscopy (live x-ray) with digital subtraction angiography (DSA), which shows where fluid goes before it's injected. That matters because the vertebral artery and brainstem are right there. Dr. Centeno and others say ultrasound alone isn't enough for the neck.
• Ask whether they're trained for the upper neck. In the Regenexx network's directory, most cervical spine doctors carry a note saying "not authorized upper cervical spine." Serious injuries from injections at this level have been published: a fatal stroke after a steroid injection into the C1-C2 joint, and a spinal cord injury after neck prolotherapy (sources on the risks page). Call and ask who trained them and how many they've done.
• Ask about credentials. See the board certification note in Step 2.
• Expect ups and downs. Patients commonly describe flares lasting days to a few months after injections (one calls it the "prolocoaster").
• Tethered cord. Some patients report tethered cord symptoms getting worse after neck injections or fusion. Clinicians disagree on how common that is. If you have tethered cord symptoms, raise them before booking.

Through the throat (transoral)

These reach the deep ligaments (alar, transverse) from the front, through the back of the throat.

• Centeno-Schultz Clinic (ePICL), Broomfield, CO. Your own bone marrow concentrate is injected into the deep ligaments under anesthesia. PICL has been done there since 2014. Cost is around $15k per procedure (one patient paid $12,500, then $14,000 for the newer ePICL, in 2024), and patients on r/cervical_instability report needing 2 to 5. Their PRP to the back of the neck cost one patient $7,000-8,000 per round (2024). Dr. Centeno answers questions on r/PICL. CCI practice
• Dr. Agnes Stogicza, PSI Pain Clinic, Budapest. Transoral injections (her clinic's site lists "PICL Treatment") alongside prolotherapy, PRP and bone marrow concentrate. US-trained. Recent prices quoted around €4,000 for PRP only or €6,000 with bone marrow concentrate. Profile | Megathread interview
• Dr. Richard McMurtrey, Utah. Per the megathread, uses a 3D C-arm and combines a scaffold with stem cells and other biologics. Not independently checked. One patient treated by him reports both front (anterior) and back (posterior) treatment, a long consult on a complex case, and major improvement. Ask whether the clinic is open to patients of any other clinic.
• Dr. Prem Pillay, Singapore. The r/cervical_instability moderator says he does transoral injections, though they aren't listed on his site. See Step 2 for details and prices.
• Dr. Rolandas Janusas. Per the megathread, brought the procedure to Europe. Patients report he's based at the Oreme clinic in Switzerland and does these injections in Lithuania, so confirm where. Profile

Be extra careful with transoral injections. The needle goes through the back of the throat into ligaments right next to the top of the spinal cord. Centeno-Schultz reports having done it since 2014 and is the clinic patients mention most often. There's no published training standard, and as with everything in this guide, the evidence so far is case reports and case series. Wherever you go, ask:

• How many have you done?
• What complications have you had?
• What imaging guidance do you use?
• Who handles complications after I fly home?

Back of the neck, top levels (C0-C2)

Fewer doctors treat this area because of the nearby vertebral artery.

• Dr. Christopher Williams, Interventional Orthopedics of Atlanta, GA, also at Regenexx Cayman, where bone marrow cells can be culture-expanded (grown in a lab to increase the count). He co-authored the C0-C2 injection technique paper with Dr. Centeno, and patients report he treats C0-C2. Ask who trained him for C0-C1 injections and how many he has done. Profile | Regenexx Cayman
• Dr. Anita van Domselaar, Relieve Clinic, Belgium (Leuven, Ghent area, Wijnegem and Schilde). Image-guided PRP, bone marrow and Regenexx procedures. Her site doesn't mention upper cervical work, but patients and the megathread report she treats C0-C2 and shares care with upper cervical chiropractor Dr. Geoffroy Van Innis. A patient who traveled there called the team the best care they'd had in seven years. Ask what image guidance the clinic uses at C0-C2 and who trained her. relieveclinic.be | Megathread interview with both
• Dr. Otoño Silva, Interventional Orthopedics of Washington, Bellevue, WA. Board-certified physiatrist, fellowship-trained at Centeno-Schultz. Image-guided PRP, bone marrow concentrate and prolotherapy from the back of the neck, with CCI as the clinic's main focus. Patients report he treats C0-C2 as well as lower levels. Ask about his experience at C0-C2 specifically. iowmed.com
• Dr. Ross Hauser, Caring Medical, Fort Myers, FL. Dextrose prolotherapy and PRP. DMX and upright cone-beam CT are done in house at the first visit. In person only. One patient reported about $3,000 per treatment, with monthly sessions recommended (2024). New neck patients
  • Controversy: patient opinion of this clinic varies widely. Its published evidence consists mainly of case reports and reviews from the clinic itself.
• Dr. Daniel Sheehan, Spaulding Rehabilitation (Mass General Brigham), Orleans and Sandwich, MA. Board-certified physiatrist. A patient told the megathread he treats C0-C7 under fluoroscopy; patient reviews on his hospital profile mention PRP, but the profile doesn't list neck work, so ask. Unusually for this list, his profile lists many insurance plans. Profile
• A/Prof Vahid Mohabbati, Sydney Pain Management Centre, several Sydney locations including Wahroonga and Westmead. Interventional pain physician with an interest in hypermobility. Does high cervical (C0-C2) procedures and PRP. Profile

Back of the neck, lower levels (C2-C7)

Many more doctors treat this area. It's still delicate, and Dr. Centeno and others say it needs C-arm fluoroscopy, not ultrasound.

• Dr. John Santa Ana, DO, Michigan Regenerative Medicine. Treats C2-C7 but not C0, using C-arm fluoroscopy. Formerly a Regenexx doctor. The megathread's author and other patients describe him as thorough and kind, and report benefit. Site
• Dr. Imrat Sohanpal, Interventional Pain and Spine Specialists of Canada (IPSSC), North York (Toronto), ON. Anesthesiologist with pain-medicine fellowship training in the UK. He lists regenerative therapy, PRP and prolotherapy among his interests, and the clinic uses live x-ray and ultrasound guidance. One patient is looking into him for image-guided injections below C2 and says he's well regarded in a Canadian CCI Facebook group. No one has reported results yet. ipssc.ca

3. Surgery (fusion)

For severe cases that haven't responded to conservative care. Before going further, read what the surgeons' own series report about complications, revisions and non-improvement.

• Who does it: Dr. Henderson, Dr. Gilete, Dr. Patel, Dr. Rao, Dr. Sandhu, Dr. Spiessberger and Dr. Bolognese, whose program reports about 1,000 craniocervical fusions. See also the US CCI and AAI surgical directory compiled by the Upper Cervical Instability Awareness group. Dr. Franck describes an outpatient C1-C2 fusion plus suboccipital craniectomy (removing a small piece of bone at the back of the skull) that he developed. Ask any of them whether they'd operate in your case.
• An alternative to fusion: Dr. Schmitz in Düsseldorf uses artificial ligaments to stabilize the neck and describes the surgery as reversible (see Step 2). It's new, with two patient reports so far.
• What it costs you in movement: the usual operations are skull-to-C2 (occipitocervical) fusion or C1-C2 fusion. C1-C2 does about half of your neck's turning, so you give up real range of motion.
• What patients report: mixed. Some say fusion fixed severe problems, though one describes unexpected new pain and a very hard recovery; others say it didn't help, and one needed a second, larger fusion after the first failed.
• The evidence: the most-cited outcome study is Henderson et al. 2024. It followed 53 consecutive EDS patients for 5 to 28 months after fusion and reported less head and neck pain, less pain medication and better function. It's retrospective with no comparison group, and the authors call for a prospective multi-center trial. Neurosurgical Review

Questions for any surgeon:

• How many of these do you do a year?
• What are your complication and revision rates?
• What happens at the levels above and below the fusion?
• Who manages complications once I'm home?

If something goes wrong

If a clinician injures you or behaves improperly, report it to the regulator first:

• FDA MedWatch (US), for problems with biologics like PRP or stem cells. MedWatch
• The clinician's state medical board. Search "[state] medical board complaint." For example, Colorado.
• Sharing your experience in the patient communities listed above, anonymously if you prefer, also helps others.

Why is CCI still controversial?

Nobody disputes craniocervical instability when it's obvious, such as after severe trauma that tears the ligaments, or in conditions like rheumatoid arthritis, Down syndrome or certain bone malformations at the base of the skull.

What's debated is the subtler version. It involves loose ligaments in people with Ehlers-Danlos syndrome or other hypermobility conditions, and it usually doesn't show up on standard lying-down scans, because the problem appears when the neck moves or bears weight. Why that version is contested:

• There are no agreed diagnostic criteria.
• Measurements and cutoffs vary between specialists.
• Normal ranges for upright and motion imaging are still being worked out.
• The symptoms overlap with many other conditions.

In practice, many doctors, including good ones, will tell you it isn't real or isn't your problem, and others are quick to diagnose it. You want someone in between who examines you, not just your scans.

Help fill the gaps

I have compiled this list with the help of Claude and Reddit posts on r/cervical_instability. It is not comprehensive. If you have additional suggestions, write to [email protected] and I can add them.

Thanks to u/Jewald for the original megathread, its map and interviews, and to everyone else who contributed their knowledge to r/cervical_instability.

This list is still thin on the UK, the rest of Asia, most of Canada, and the Midwest. If you've seen someone, write to [email protected] with their name, city, what they did (imaging, PT, injections, surgery), whether they offer telehealth, and the rough cost. I'll add them once I've checked the details.