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PubMed This is a summary of 18 peer-reviewed journal articles Updated
Endocrinology

Building Your Care Team and Long-Term Monitoring

At a Glance

Long-term McCune-Albright syndrome care is individualized: a coordinated team monitors affected bones, hormone levels, vision, and hearing while supporting physical function, emotional health, and transitions between pediatric and adult care.

Because McCune-Albright Syndrome (MAS) is a lifelong, “mosaic” condition, your needs will change as you move through different stages of life. Long-term management is not about constant crisis intervention; it is about building a proactive, multidisciplinary team that monitors for changes before they become problems [1][2].

Building a Multidisciplinary Team

The 2019 International FD/MAS Consortium guidelines emphasize that care should ideally be coordinated through a specialized center. Because MAS affects multiple systems, you need a team that “speaks the same language” regarding this rare condition, though routine monitoring can often be shared with local clinicians in consultation with an expert center [1][3].

A comprehensive care team typically includes:

  • Pediatric/Adult Endocrinologist: To manage the autonomous glands and hormone levels [4].
  • Orthopedic Surgeon: Specialized in metabolic bone disease to monitor and stabilize fibrous dysplasia [1].
  • Otolaryngologist (ENT) & Audiologist: To monitor for hearing loss, especially if there is bone involvement in the skull (temporal bone) [5][1].
  • Ophthalmologist: For regular vision checks if fibrous dysplasia is near the optic nerves [6].
  • Geneticist: To assist with diagnostic clarity if symptoms are unusual and discuss reproductive questions [7].
  • Dental Professional: To monitor jaw involvement and provide specialized care [8].

The Monitoring Framework

Surveillance is tailored to your specific clinical presentation. It is an individualized active-surveillance plan rather than a one-size-fits-all calendar [1].

1. Baseline Mapping

At the time of diagnosis, doctors usually perform assessments to see which organ systems are involved. This often includes:

  • Whole-Body Bone Scan (Technetium-99m): To map out skeletal involvement of fibrous dysplasia, though it may be supplemented by targeted imaging [1].
  • Individualized Hormonal Screening: Depending on age, symptoms, and known areas of involvement, tests may include thyroid function, growth hormone (IGF-1), puberty hormones, and fasting phosphate with renal phosphate handling [9][10].

2. Active Surveillance

Once your baseline is established, monitoring intervals depend on how active the disease is:

  • Skeletal: Clinical reviews of pain and mobility, with activity, physical therapy, and fall/fracture prevention plans. Targeted X-rays or CT scans are used when clinically indicated to account for radiation exposure [11][1].
  • Endocrine: Regular blood work to ensure hormones stay in a safe range. This is especially vital before any surgery, as uncontrolled growth hormone (GH) can cause bone lesions to regrow more quickly [12][9].
  • Craniofacial: If the skull is involved, vision and hearing tests are performed periodically. Surgery on the optic nerve is generally reserved for actual vision loss, not just because a scan shows the nerve is crowded [6][11].
  • Adult Transition: There should be a clear plan to transition from pediatric to adult care, addressing physical therapy, fertility, and pregnancy planning.

Managing the Psychological Toll

Living with a rare, unpredictable condition like MAS carries a significant psychosocial burden. Patients and parents often report high levels of “diagnostic uncertainty” and anxiety [13][14].

  • Scan Anxiety: It is common to feel a spike in stress (sometimes called “scanxiety”) before routine imaging. While researchers are still studying specific MAS coping strategies, many families find that having a clear, written plan for why a scan is being done can help reduce fear of the unknown [15][16].
  • Coping Strategies: Studies show that patients who use “active” coping—such as seeking information and participating in advocacy groups—tend to feel more in control of their journey [15][17].
  • Interdisciplinary Support: Psychology and pain rehabilitation services are increasingly recognized as essential parts of the MAS care team. They can help with pain management, self-stigma, and the emotional weight of living with a rare disease [18][17].

Remember, you are the most important member of your care team. By coordinating with specialists and staying informed, you can move from reactive treatment to proactive management of McCune-Albright Syndrome.

Common questions in this guide

What specialists should be on a McCune-Albright syndrome care team?
Care often includes an endocrinologist and an orthopedic surgeon, with an ear, nose, and throat specialist, audiologist, ophthalmologist, geneticist, and dental professional involved when relevant. Psychology and pain rehabilitation can support emotional health and symptom management. A specialized center may coordinate the plan while local clinicians provide routine follow-up.
How often are people with McCune-Albright syndrome monitored?
There is no single schedule for everyone. Follow-up is tailored to the organs involved, the person’s age and symptoms, and how active the condition is; it may include visits, blood tests, imaging, and hearing or vision checks. A specialist center can help create a written plan that local clinicians follow.
What tests are used for long-term monitoring in McCune-Albright syndrome?
At diagnosis, a whole-body bone scan may map areas of fibrous dysplasia, with targeted X-rays or CT used when needed. Blood tests may check thyroid function, a growth hormone marker called IGF-1, puberty hormones, or kidney phosphate handling based on age and symptoms. Vision and hearing tests are especially important when the skull is involved.
Why do hormone levels matter before major bone surgery in MAS?
Uncontrolled growth hormone activity can make bone lesions regrow more quickly after surgery. Doctors may therefore check growth hormone-related tests and thyroid levels before a major bone procedure and address abnormal results first. The exact testing and treatment depend on the person’s condition.
Does a scan showing a crowded optic nerve mean surgery is needed?
Not usually. In McCune-Albright syndrome, surgery near the optic nerve is generally reserved for documented vision loss rather than crowding on an imaging scan alone. Regular eye examinations and review by the care team help determine whether treatment is needed.
How can I manage scan anxiety with McCune-Albright syndrome?
Many people find it helpful to have a written explanation of why each scan is being done and what the results may change. Seeking reliable information, joining an advocacy or peer-support group, and working with a psychologist or social worker can make the process feel more manageable. Ask your care team about support for pain and anxiety.

Questions For You

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Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Can we review our 'surveillance plan' to clarify which specialist is responsible for each test and how often we should be checking in?
  2. 2.Since we are at a specialized center, how do my different specialists (orthopedic, endocrine, etc.) communicate to ensure my care is coordinated?
  3. 3.What specific 'high-risk' features should we be looking for in my craniofacial scans that might change our monitoring frequency?
  4. 4.Before we schedule any major bone surgeries, have we confirmed that my growth hormone and thyroid levels are stable?
  5. 5.Are there psychologists or social workers on our team who have experience with rare diseases like MAS?

References

References (18)
  1. 1

    Best practice management guidelines for fibrous dysplasia/McCune-Albright syndrome: a consensus statement from the FD/MAS international consortium.

    Javaid MK, Boyce A, Appelman-Dijkstra N, et al.

    Orphanet journal of rare diseases 2019; (14(1)):139 doi:10.1186/s13023-019-1102-9.

    PMID: 31196103
  2. 2

    A multidisciplinary care pathway improves quality of life and reduces pain in patients with fibrous dysplasia/McCune-Albright syndrome: a multicenter prospective observational study.

    Meier ME, Hagelstein-Rotman M, van de Ven AC, et al.

    Orphanet journal of rare diseases 2022; (17(1)):439 doi:10.1186/s13023-022-02588-z.

    PMID: 36528764
  3. 3

    Developing a Standardised Dataset for Natural History Studies in Fibrous Dysplasia/McCune-Albright Syndrome.

    Priego Zurita AL, Bulaicon OO, Bryce J, et al.

    Calcified tissue international 2025; (116(1)):68 doi:10.1007/s00223-025-01379-5.

    PMID: 40316789
  4. 4

    The Clinical Spectrum of McCune-Albright Syndrome and Its Management.

    Spencer T, Pan KS, Collins MT, Boyce AM

    Hormone research in paediatrics 2019; (92(6)):347-356 doi:10.1159/000504802.

    PMID: 31865341
  5. 5

    Association of Hearing Loss and Otologic Outcomes With Fibrous Dysplasia.

    Boyce AM, Brewer C, DeKlotz TR, et al.

    JAMA otolaryngology-- head & neck surgery 2018; (144(2)):102-107 doi:10.1001/jamaoto.2017.2407.

    PMID: 29192304
  6. 6

    Optic disc edema in fibrous dysplasia/McCune-Albright syndrome: Prevalence, etiologies, and clinical implications.

    Raborn LN, Pan KS, FitzGibbon EJ, et al.

    Bone 2021; (143()):115661 doi:10.1016/j.bone.2020.115661.

    PMID: 32979536
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    Choosing the Best Tissue and Technique to Detect Mosaicism in Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS).

    Vado Y, Manero-Azua A, Pereda A, Perez de Nanclares G

    Genes 2024; (15(1)) doi:10.3390/genes15010120.

    PMID: 38255009
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    Long-Term Follow-Up of a Patient with McCune-Albright Syndrome: A Case Report.

    Shoji Y, Kusaka S, Kawashima K, et al.

    Journal of clinical medicine 2025; (14(17)) doi:10.3390/jcm14176101.

    PMID: 40943859
  9. 9

    Autonomous growth hormone secretion due to McCune Albright syndrome in paediatric age group: an ominous triad.

    Jayant SS, Walia R, Gupta R, et al.

    Endocrine 2023; (81(1)):149-159 doi:10.1007/s12020-023-03333-7.

    PMID: 36877453
  10. 10

    Orthopaedic diagnostic pitfalls in fibroblast growth factor 23-mediated hypophosphatemic rickets/osteomalacia in fibrous dysplasia/McCune-Albright syndrome: Two burosumab-treated cases.

    Nakagawa T, Imanishi J, Koda A, et al.

    Bone reports 2026; (30()):101945 doi:10.1016/j.bonr.2026.101945.

    PMID: 42733467
  11. 11

    Management Strategies of Fibrous Dysplasia Involving the Paranasal Sinus and the Adjacent Skull Base.

    Shi LL, Xiong P, Zhen HT

    Ear, nose, & throat journal 2025; (104(2)):85-92 doi:10.1177/01455613221088728.

    PMID: 35418265
  12. 12

    Surgical Management of Polyostotic Craniofacial Fibrous Dysplasia: Long-Term Outcomes and Predictors for Postoperative Regrowth.

    Boyce AM, Burke A, Cutler Peck C, et al.

    Plastic and reconstructive surgery 2016; (137(6)):1833-1839 doi:10.1097/PRS.0000000000002151.

    PMID: 27219238
  13. 13

    Fibrous dysplasia patients with and without craniofacial involvement report reduced quality of life inclusive of stigma, depression, and anxiety.

    Konradi A

    Chronic illness 2022; (18(4)):927-936 doi:10.1177/17423953211049436.

    PMID: 34730463
  14. 14

    A Qualitative Approach to Quality of Life in Fibrous Bone Dysplasia /McCune Albright Syndrome: Looking Beyond Quantitative Analysis.

    Jousse J, Merle B, Feurer E, et al.

    Calcified tissue international 2025; (116(1)):18 doi:10.1007/s00223-024-01332-y.

    PMID: 39751907
  15. 15

    The Natural Course of Pain in Fibrous Dysplasia/McCune Albright Syndrome: A Prospective Follow Up Study.

    Bulaicon OO, Hagelstein-Rotman M, Meier ME, et al.

    Calcified tissue international 2025; (116(1)):140 doi:10.1007/s00223-025-01452-z.

    PMID: 41326696
  16. 16

    Patients With Isolated Craniofacial Dysplasia Report Better Quality of Life Compared With Those With Craniofacial Dysplasia and Extracranial Involvement.

    Hagelstein-Rotman M, Genders SW, Andela CD, et al.

    Ophthalmic plastic and reconstructive surgery 2020; (36(3)):292-297 doi:10.1097/IOP.0000000000001536.

    PMID: 31809491
  17. 17

    Stigma and psychological distress among pediatric participants in the FD/MAS Alliance Patient Registry.

    Konradi A

    BMC pediatrics 2021; (21(1)):173 doi:10.1186/s12887-021-02647-7.

    PMID: 33853566
  18. 18

    Intensive, interdisciplinary pain treatment in fibrous dysplasia/McCune-Albright syndrome.

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    JBMR plus 2026; (10(8)):ziag107 doi:10.1093/jbmrpl/ziag107.

    PMID: 42494516

This page is for informational purposes only and does not constitute medical advice. Your McCune-Albright syndrome specialists should tailor monitoring, testing, and treatment to your symptoms, age, and organ involvement.