Skip to content
How It Works
Explore
Ask a Question Resources Pricing
Who It's For
Patients
Decode results, prep for appointments, weigh options.
Caregivers & advocates
Carry the research load for someone you love.
Providers & clinicians
Resources for patients in your practice.
Log In Ask a Question
PubMed This is a summary of 22 peer-reviewed journal articles Updated
Physical Therapy · Chiari Malformation and Ehlers-Danlos Syndrome

Is Physical Therapy Safe for Chiari and Ehlers-Danlos?

At a Glance

Physical therapy for Chiari malformation and Ehlers-Danlos syndrome should be individualized. It usually emphasizes joint stability, body-position awareness, gradual seated or lying-down exercise, and avoiding breath-holding, forceful neck techniques, or movements that worsen symptoms.

In this answer

5 sections

01

When to Stop Exercise and Seek Urgent Care

02

Rethinking Flexibility: Stability Over End-Range Stretching

03

Building Control with Isometrics and Proprioception

04

Chiari, Syringomyelia, and Safe Breathing

05

Exercising with Dysautonomia (POTS)

Physical therapy for someone with both Chiari malformation and Ehlers-Danlos Syndrome (EDS) requires a highly individualized approach. Because these conditions present differently in everyone, this guide provides general principles, not a specific exercise prescription. Your starting point depends on your specific EDS subtype (such as hypermobile EDS), the characteristics of your Chiari malformation (where the cerebellar tonsils extend into the spinal canal), whether you have had decompression surgery, and whether you have associated conditions like syringomyelia or dysautonomia [1][2]. An evaluation by a physical therapist familiar with hypermobility and neurological conditions is essential to tailor your care safely [3].

When to Stop Exercise and Seek Urgent Care

While guided exercise is generally beneficial, certain symptoms require you to stop immediately and seek prompt medical evaluation. Do not push through an exercise if you experience:

  • New or progressive weakness, numbness, or loss of temperature sensation [4]
  • Changes in your gait (walking), balance, or coordination [5]
  • Loss of bowel or bladder control [6]
  • New difficulties with swallowing, speaking, or breathing [7]
  • A sudden, severe, or unusual headache [8]
  • Fainting (syncope), severe chest pain, or sustained rapid heart palpitations [9]

Rethinking Flexibility: Stability Over End-Range Stretching

In Ehlers-Danlos Syndrome, faulty connective tissue can lead to joint hypermobility, meaning joints can move beyond a normal range. This laxity may be associated with craniocervical instability (CCI), where the ligaments of the upper neck do not hold the head securely [1][10]. Not everyone with EDS or Chiari has CCI, but if it is suspected based on your symptoms, a specialist assessment is required [11].

Because your joints may already be loose, ballistic or forced end-range stretching can increase your risk of joint injury or dislocation [12]. While gentle, clinician-prescribed mobility work may be appropriate for specific restrictions, therapy usually prioritizes stabilization [13].

Furthermore, forceful high-velocity cervical (neck) manipulation and aggressive mechanical traction should be avoided unless explicitly approved by a specialist [3][11]. These forced maneuvers carry rare but serious risks of acute neurological injury, vascular damage, or worsening of spinal cord compression [14][15][16].

Building Control with Isometrics and Proprioception

Therapeutic exercise and motor-function training are standard approaches for hypermobility [13]. A physical therapist may utilize isometric exercises—where muscles are engaged to build strength without moving the joint itself. While often a helpful low-load option, isometrics are not risk-free and can provoke pain or headaches if done incorrectly; they must be carefully selected and dosed by your therapist [3].

Rehabilitation will also focus on proprioception, which is your brain’s ability to sense where your joints are in space. Hypermobility often impairs this sense, so therapy aims to train your body to maintain a safe, neutral joint position during movement [17]. Do not self-prescribe neck exercises; always have a professional guide your progression [3].

Chiari, Syringomyelia, and Safe Breathing

Chiari malformation can be associated with syringomyelia, a condition where a fluid-filled cavity (called a syrinx) develops within the spinal cord [2]. This altered spinal fluid flow means that activities causing a sudden spike in pressure within your head or chest can temporarily worsen neurological symptoms or trigger severe “cough headaches” at the back of the skull [18][8].

To minimize these pressure spikes, avoid deliberate breath-holding or maximal straining (the Valsalva maneuver) during physical exertion [18]. Practice exhaling during the most difficult part of an exercise, and if a specific movement reliably provokes head or neck symptoms, stop and discuss it with your clinician [7].

Exercising with Dysautonomia (POTS)

Many people with hypermobility and Chiari also experience associated forms of dysautonomia, such as Postural Orthostatic Tachycardia Syndrome (POTS) [19][20]. Because POTS causes dizziness, rapid heart rate, and fatigue when upright, starting therapy in a standing position can trigger severe symptom flares.

A safer approach often involves starting with recumbent (lying down) or seated exercises, and gradually progressing to upright activities as your physiological tolerance improves [19][9]. Aquatic (water) therapy can help reduce the strain of gravity, but requires caution: warm water can worsen dizziness, standing in a pool can still cause blood pooling, and entering or exiting the pool safely may require supervision [21]. Your exercise intensity, heart rate targets, and progression must be individually tailored, as there is no single universal cutoff for POTS [22].

Common questions in this guide

Can physical therapy be safe if I have both Chiari malformation and Ehlers-Danlos syndrome?
It can be, but the plan must be individualized to your EDS subtype, the anatomy of your Chiari malformation, any prior decompression surgery, and other conditions such as a fluid-filled cavity in the spinal cord or problems regulating heart rate and blood pressure. Work with a physical therapist experienced in hypermobility and neurological conditions rather than following a generic exercise program.
What types of exercise are usually emphasized for Chiari and EDS?
Therapy often focuses on joint stabilization, carefully dosed strengthening without moving the joint, and training your body to sense safe joint positions. If standing activity worsens dizziness or a rapid heart rate, a clinician may begin with seated or lying-down exercise and progress gradually.
Should I avoid neck manipulation or traction with Chiari and EDS?
Forceful, rapid neck manipulation and aggressive traction should generally be avoided unless a specialist specifically approves them. These techniques can rarely cause neurological or blood-vessel injury or worsen pressure on the spinal cord.
What symptoms mean I should stop physical therapy and seek urgent care?
Stop and seek prompt medical evaluation for new or worsening weakness, numbness, walking or balance problems, loss of bowel or bladder control, trouble swallowing, speaking, or breathing, or a sudden severe headache. Fainting, severe chest pain, or a sustained rapid heartbeat also requires urgent attention.
How should I exercise if I also have POTS?
Postural Orthostatic Tachycardia Syndrome, or POTS, can make standing exercise trigger dizziness, a rapid heartbeat, and fatigue, so therapy often starts with seated or lying-down movements. Progression, heart-rate goals, and symptom limits should be individualized; water exercise can help some people, but warm water and getting in or out of the pool may worsen dizziness or create a fall risk.
Why should I avoid holding my breath during exercise with Chiari?
Breath-holding and maximal straining can briefly raise pressure in the head or chest and may worsen symptoms or trigger a cough-related headache. Exhale during the hardest part of an exercise and stop any movement that reliably causes head or neck symptoms.
Does having Ehlers-Danlos mean I have craniocervical instability?
No. Not everyone with Ehlers-Danlos syndrome or Chiari malformation has craniocervical instability, which means excessive movement or poor support at the upper neck. If it is suspected, a specialist assessment and any needed imaging should guide the therapy plan.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Can you refer me to a physical therapist who has specific experience evaluating and treating patients with hypermobility and neurological conditions like Chiari?
  2. 2.Based on my symptoms and neurological exam, is additional imaging (such as flexion/extension MRI) indicated to check for upper neck instability, and how would those results change my physical therapy plan?
  3. 3.Do I have a syrinx or any signs of spinal cord compression that would require strict movement or lifting restrictions?
  4. 4.What individualized heart rate, blood pressure, or symptom thresholds should we use to guide and limit my exercise intensity for POTS?
  5. 5.What should I do if my symptoms flare up later in the day or the day after a physical therapy session?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

Related questions

Can EDS Cause an Acquired Chiari Malformation? ExplainedChiari Decompression or Fusion: How Do Surgeons Decide?Why Can't I Feel Hot or Cold on My Arms and Shoulders?Can Chiari Malformation Be Treated Without Surgery?Can Chiari Decompression Improve POTS and Dysautonomia?Can MCAS Cause Chiari Malformation or Worsen Symptoms?Can Occult Tethered Cord Affect Chiari Malformation?How Long Is Syringomyelia Recovery After Chiari Surgery?Can Upright MRI Show Chiari Malformation and CCI?What Are the Different Types of Chiari Malformation?Why Does Coughing Cause Back-of-Head Pain With Chiari?

References

References (22)
  1. 1

    Assessment of patients with a Chiari malformation type I.

    Tam SKP, Chia J, Brodbelt A, Foroughi M

    Brain & spine 2022; (2()):100850 doi:10.1016/j.bas.2021.100850.

    PMID: 36248113
  2. 2

    Chiari Malformation Type 1 in Adults.

    Zisakis A, Sun R, Pepper J, Tsermoulas G

    Advances and technical standards in neurosurgery 2023; (46()):149-173 doi:10.1007/978-3-031-28202-7_8.

    PMID: 37318574
  3. 3

    Recognizing and Effectively Managing Hypermobility-Related Conditions.

    Russek LN, Stott P, Simmonds J

    Physical therapy 2019; (99(9)):1189-1200 doi:10.1093/ptj/pzz078.

    PMID: 31158283
  4. 4

    Anterior Spinal Cord Fissuring: A Predictor of Spontaneous Resolution of Syrinx?

    Multani KM, Rajesh BJ, Kumar K, Kumar A

    Neurospine 2021; (18(1)):240-244 doi:10.14245/ns.2040308.154.

    PMID: 33211948
  5. 5

    Novelty in Impact of Neurorehabilitation in a Classic Case of Syringomyelia.

    Gade SP, Harjpal P, Kovela RK

    Cureus 2022; (14(9)):e29126 doi:10.7759/cureus.29126.

    PMID: 36258946
  6. 6

    Spontaneous resolved cervical spine epidural hematoma: A case report.

    Fattahi A, Taheri M

    Surgical neurology international 2017; (8()):183 doi:10.4103/sni.sni_223_17.

    PMID: 28868195
  7. 7

    Clinical diagnosis-part I: what is really caused by Chiari I.

    Ciaramitaro P, Ferraris M, Massaro F, Garbossa D

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2019; (35(10)):1673-1679 doi:10.1007/s00381-019-04206-z.

    PMID: 31161267
  8. 8

    Coronavirus disease 2019-associated persistent cough and Chiari malformation type I resulting in acute respiratory failure: illustrative case.

    Piscopo AJ, Teferi N, Marincovich A, et al.

    Journal of neurosurgery. Case lessons 2023; (6(25)).

    PMID: 38109716
  9. 9

    Activity and Exercise Intolerance After Concussion: Identification and Management of Postural Orthostatic Tachycardia Syndrome.

    Miranda NA, Boris JR, Kouvel KM, Stiles L

    Journal of neurologic physical therapy : JNPT 2018; (42(3)):163-171 doi:10.1097/NPT.0000000000000231.

    PMID: 29864098
  10. 10

    Neurological and spinal manifestations of the Ehlers-Danlos syndromes.

    Henderson FC, Austin C, Benzel E, et al.

    American journal of medical genetics. Part C, Seminars in medical genetics 2017; (175(1)):195-211 doi:10.1002/ajmg.c.31549.

    PMID: 28220607
  11. 11

    Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations.

    Russek LN, Block NP, Byrne E, et al.

    Frontiers in medicine 2022; (9()):1072764 doi:10.3389/fmed.2022.1072764.

    PMID: 36743665
  12. 12

    Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers-Danlos Syndrome hypermobility type/Joint Hypermobility Syndrome.

    Bovet C, Carlson M, Taylor M

    American journal of medical genetics. Part A 2016; (170(8)):2044-51 doi:10.1002/ajmg.a.37774.

    PMID: 27273746
  13. 13

    Physical therapy interventions in generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome: a scoping review.

    Garreth Brittain M, Flanagan S, Foreman L, Teran-Wodzinski P

    Disability and rehabilitation 2024; (46(10)):1936-1953 doi:10.1080/09638288.2023.2216028.

    PMID: 37231592
  14. 14

    Cervical epidural hematoma after spinal manipulation therapy: a case report.

    Chen Q, Feng JF, Tang X, et al.

    BMC musculoskeletal disorders 2019; (20(1)):461 doi:10.1186/s12891-019-2871-y.

    PMID: 31638954
  15. 15

    CILIOCHOROIDAL EFFUSION AND ACUTE MACULAR NEURORETINOPATHY ASSOCIATED WITH CERVICAL TRACTION THERAPY.

    Dedania VS, Ghodasra DH, Kay CN, et al.

    Retinal cases & brief reports 2018; (12(1)):24-28 doi:10.1097/ICB.0000000000000434.

    PMID: 27668501
  16. 16

    Cervical Spine Injury From Unrecognized Craniocervical Instability in Severe Pierre Robin Sequence Associated With Skeletal Dysplasia.

    Zhu X, Evans KN, El-Gharbawy A, et al.

    The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association 2018; (55(5)):773-777 doi:10.1177/1055665618758102.

    PMID: 29489401
  17. 17

    Assessment of gait mechanics and muscle strength in hypermobile Ehlers Danlos Syndrome.

    Ball LN, Jacobs MV, McLouth CJ, et al.

    Clinical biomechanics (Bristol, Avon) 2024; (113()):106210 doi:10.1016/j.clinbiomech.2024.106210.

    PMID: 38412743
  18. 18

    Spontaneous Improvement of Chiari I Malformation and Syringomyelia in a Patient With Cystic Fibrosis: Case Report.

    Khanna AR, Coumans JV

    Neurosurgery 2016; (78(2)):E305-8 doi:10.1227/NEU.0000000000000980.

    PMID: 26308731
  19. 19

    The use and effectiveness of exercise for managing postural orthostatic tachycardia syndrome in young adults with joint hypermobility and related conditions: A scoping review.

    Peebles KC, Jacobs C, Makaroff L, Pacey V

    Autonomic neuroscience : basic & clinical 2024; (252()):103156 doi:10.1016/j.autneu.2024.103156.

    PMID: 38401460
  20. 20

    Dysautonomia in the Ehlers-Danlos syndromes and hypermobility spectrum disorders-With a focus on the postural tachycardia syndrome.

    Mathias CJ, Owens A, Iodice V, Hakim A

    American journal of medical genetics. Part C, Seminars in medical genetics 2021; (187(4)):510-519 doi:10.1002/ajmg.c.31951.

    PMID: 34766441
  21. 21

    Dysautonomia: A Forgotten Condition - Part 1.

    Rocha EA, Mehta N, Távora-Mehta MZP, et al.

    Arquivos brasileiros de cardiologia 2021; (116(4)):814-835 doi:10.36660/abc.20200420.

    PMID: 33886735
  22. 22

    Adaptive Approaches to Exercise Rehabilitation for Postural Tachycardia Syndrome and Related Autonomic Disorders.

    Ziaks L, Johnson K, Schiltz K, et al.

    Archives of rehabilitation research and clinical translation 2024; (6(4)):100366 doi:10.1016/j.arrct.2024.100366.

    PMID: 39822199

This page is for informational purposes only and does not replace medical advice or an individualized plan from your clinician and physical therapist. Seek urgent care for new or worsening neurological symptoms or other warning signs described here.

Get notified when new evidence is published on Chiari malformation.

We monitor PubMed for new peer-reviewed studies on this topic and email a short summary when something meaningful changes.