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Building Your Care Team & First Visit Prep

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Managing Multiple Osteochondromas requires a multidisciplinary care team, typically including a pediatric orthopedic surgeon, orthopedic oncologist, geneticist, and physical therapist. To get the best care, always bring physical copies of previous imaging, genetic tests, and a tracking log of your bumps to the first visit.

Key Takeaways

  • • A comprehensive care team for Multiple Osteochondromas includes pediatric orthopedists, orthopedic oncologists, geneticists, and physical therapists.
  • • Always bring physical CDs or direct digital links of all previous imaging (X-rays, MRIs) to your first doctor's visit, rather than relying on the office to find them.
  • • Keep a 'bump map' to track the location, size, and pain levels of bone lesions over time to help your doctor monitor changes.
  • • Ask prospective doctors about their specific protocols for monitoring high-risk areas and their experience with guided growth surgeries like hemiepiphysiodesis.
  • • Orthopedic oncologists become increasingly important as patients reach adulthood due to the higher risk of malignant changes in bone bumps.

Managing Multiple Osteochondromas is a lifelong journey, and the most important step you can take is building a “home base” of experts who understand this rare condition. Because the condition affects the bones, the skin, the nerves, and even the family’s future planning, you aren’t just looking for one doctor—you are hiring a coordinated team [1][2].

Your “Core” Care Team

Think of these specialists as the primary members of your child’s medical board:

  • Pediatric Orthopedic Surgeon: This is often the “lead” of the team for children. A pediatric orthopedist is typically entirely sufficient to manage the condition during childhood. They monitor bone alignment, track growth, and perform surgeries to correct deformities like knock-knees or forearm bowing [3][4].
  • Orthopedic Oncologist: They are the world’s leading experts in bone tumors. While they are crucial experts, an oncologist typically becomes an essential team member primarily as the patient approaches adulthood (when the risk of malignant change increases) or if a “red flag” lesion appears [5][6].
  • Geneticist / Genetic Counselor: They help confirm the diagnosis through testing (identifying EXT1 or EXT2 mutations) and provide essential information for family planning and understanding the likely course of the disease [7][8]. Read more about their role in Genetics & Biology.
  • Physical Therapist: A PT who understands bone disorders can help manage chronic pain through strength building and range-of-motion exercises, which can sometimes delay or even prevent the need for surgery [9].

Preparing for the First Visit

Because this condition is rare, you may know more about your child’s specific history than the doctor does at first. Being organized helps them give you the best care. Bring the following to every new appointment:

  1. Imaging on a Disc: Do not rely on the doctor’s office to “pull up” scans from another hospital. Always bring a physical CD or a confirmed digital link of all previous X-rays, CT scans, and MRIs [2][10].
  2. Genetic Test Results: If you have had genetic testing, bring the full lab report showing the specific mutation [11][2].
  3. The “Bump Map”: Keep a simple log of where the bumps are, when they were first noticed, and if any of them have changed in size or caused new pain [2][12].
  4. Growth Charts: Records of your child’s height over time can help the surgeon predict growth spurts and time any necessary “guided growth” surgeries [13].

Vetting Your Team

You have the right to ensure your medical team has the necessary expertise. Don’t be afraid to ask direct questions during your first visit. A good specialist will welcome your engagement.

  • Multidisciplinary Approach: Ask, “How do you coordinate with other specialists, like geneticists or neurologists, if my child develops a complex complication?” [1][14].
  • Surveillance Strategy: Ask, “What is your specific protocol for monitoring ‘silent’ areas like the pelvis or spine?” [15][16].
  • Growth Modulation Experience: For children, ask specifically about their experience with hemiepiphysiodesis (guided growth) and how they decide when the “window of opportunity” for this procedure is closing [3][13].

By building a team that values your input and has specific experience with HME, you move from reacting to the condition to actively managing it.

Frequently Asked Questions

What kind of doctors treat Multiple Osteochondromas?
A coordinated care team usually includes a pediatric orthopedic surgeon, an orthopedic oncologist, a geneticist, and a physical therapist. For children, the pediatric orthopedist is often the lead doctor managing bone growth and alignment.
What should I bring to my first appointment for MO/HME?
You should bring a physical CD or a direct digital link of all previous X-rays, CT scans, and MRIs. It is also helpful to bring genetic test results, your child's growth charts, and a 'bump map' logging where the bone bumps are located and if they have changed.
When should an orthopedic oncologist join my HME care team?
An orthopedic oncologist typically becomes an essential team member as a patient approaches adulthood, which is when the risk of a benign bump becoming malignant increases. They should also be consulted if a suspicious or 'red flag' lesion appears at any age.
How can physical therapy help with Multiple Osteochondromas?
A physical therapist who understands bone disorders can help manage chronic pain through targeted strength building and range-of-motion exercises. In some cases, this can delay or even prevent the need for surgical intervention.
What questions should I ask a new doctor about managing HME?
You should ask about their specific experience treating the condition, how they coordinate with other specialists, and their protocol for monitoring bumps in high-risk areas like the pelvis or spine. For children, ask about their experience with guided growth surgeries.

Questions for Your Doctor

  • • How many patients with Multiple Osteochondromas do you currently manage in your practice?
  • • How do you coordinate care between orthopedics, genetics, and other specialists?
  • • What is your specific protocol for monitoring bumps in high-risk areas like the pelvis or spine?
  • • If we need surgery, what is your experience with growth-guidance techniques like hemiepiphysiodesis?
  • • *(For the Oncologist)*: What specific MRI findings would make you decide a bump needs to be removed versus just monitored?
  • • *(For the Geneticist)*: Can you walk us through the process and success rates of using IVF with PGT-M for family planning?

Questions for You

  • • Which symptoms are currently affecting my child’s life the most (e.g., pain, restricted movement, or self-consciousness)?
  • • Do I have all our imaging records (X-rays, MRIs) on a physical disc or accessible via a digital portal?
  • • Am I looking for a doctor who takes a 'wait and see' approach or one who is more proactive about surgical intervention?

Want personalized information?

Type your question below to get evidence-based answers tailored to your situation.

References

  1. 1

    Hereditary Multiple Exostoses: Current Insights.

    D'Arienzo A, Andreani L, Sacchetti F, et al.

    Orthopedic research and reviews 2019; (11()):199-211 doi:10.2147/ORR.S183979.

    PMID: 31853203
  2. 2

    Hereditary multiple exostoses: an educational review.

    Rueda-de-Eusebio A, Gomez-Pena S, Moreno-Casado MJ, et al.

    Insights into imaging 2025; (16(1)):46 doi:10.1186/s13244-025-01899-6.

    PMID: 39982564
  3. 3

    Management of Lower Extremity Deformity in Children with Hereditary Multiple Exostoses.

    Whalen MJ, van Bosse HJP

    Journal of the Pediatric Orthopaedic Society of North America 2025; (13()):100277 doi:10.1016/j.jposna.2025.100277.

    PMID: 41158744
  4. 4

    A Rare Presentation and Management of Forearm Deformity in a Patient with Hereditary Multiple Exostoses: A Case Report.

    Agashe M, Shah A, Parikh SN

    JBJS case connector 2018; (8(3)):e53 doi:10.2106/JBJS.CC.17.00295.

    PMID: 30045076
  5. 5

    A Rare Case of Hereditary Multiple Exostoses in a Woman.

    Ghamri RA

    Orthopedic nursing 2024; (43(2)):119-122 doi:10.1097/NOR.0000000000001018.

    PMID: 38546687
  6. 6

    Hereditary Multiple Exostoses: a review of clinical appearance and metabolic pattern.

    Beltrami G, Ristori G, Scoccianti G, et al.

    Clinical cases in mineral and bone metabolism : the official journal of the Italian Society of Osteoporosis, Mineral Metabolism, and Skeletal Diseases 2016; (13(2)):110-118 doi:10.11138/ccmbm/2016.13.2.110.

    PMID: 27920806
  7. 7

    Identification of pathogenic mutations in 6 Chinese families with multiple exostoses by whole-exome sequencing and multiplex ligation-dependent probe amplification: Case series.

    Long X, Li Z, Huang Y, et al.

    Medicine 2019; (98(20)):e15692 doi:10.1097/MD.0000000000015692.

    PMID: 31096510
  8. 8

    Identification of a novel EXT2 frameshift mutation in a family with hereditary multiple exostoses by whole-exome sequencing.

    Yang M, Xie H, Xu B, et al.

    Journal of clinical laboratory analysis 2021; (35(9)):e23968 doi:10.1002/jcla.23968.

    PMID: 34403521
  9. 9

    Eccentric Training as an Adjunct to Rehabilitation Program for Hereditary Multiple Exostoses: A Case Report.

    Kanik ZH, Gunaydin G, Sozlu U, et al.

    Journal of clinical and diagnostic research : JCDR 2016; (10(2)):YD03-4 doi:10.7860/JCDR/2016/16898.7302.

    PMID: 27042573
  10. 10

    Multidetector computed tomography in the evaluation of hereditary multiple exostoses.

    Kwee RM, Fayad LM, Fishman EK, Fritz J

    European journal of radiology 2016; (85(2)):383-91.

    PMID: 26781144
  11. 11

    Hereditary Multiple Exostoses-A Review of the Molecular Background, Diagnostics, and Potential Therapeutic Strategies.

    Bukowska-Olech E, Trzebiatowska W, Czech W, et al.

    Frontiers in genetics 2021; (12()):759129 doi:10.3389/fgene.2021.759129.

    PMID: 34956317
  12. 12

    Advances in the pathogenesis and possible treatments for multiple hereditary exostoses from the 2016 international MHE conference.

    Phan AQ, Pacifici M, Esko JD

    Connective tissue research 2018; (59(1)):85-98 doi:10.1080/03008207.2017.1394295.

    PMID: 29099240
  13. 13

    Rapidly acquired valgus deformity of the knee after osteochondroma resection in multiple hereditary exostoses pediatric patients: A report of two cases.

    Aitchison AH, Alcoloumbre D, Belzarena AC, Blanco JS

    Radiology case reports 2022; (17(1)):201-207 doi:10.1016/j.radcr.2021.10.037.

    PMID: 34815827
  14. 14

    Pneumothorax as the first presentation of multiple exostosis.

    Khoury L, Jabarin M, Hamad Saied M

    Pediatric pulmonology 2025; (60(1)):e27316 doi:10.1002/ppul.27316.

    PMID: 39387818
  15. 15

    Spinal Screening MRI Trends in Patients with Multiple Hereditary Exostoses: National Survey.

    Montgomery BK, Cahan EM, Frick S

    Cureus 2019; (11(12)):e6452 doi:10.7759/cureus.6452.

    PMID: 32010535
  16. 16

    A Unique Case of Asymptomatic Osteochondroma From the Rib in Multiple Hereditary Exostoses: Insights Into Screening and Management.

    Larson LM, Morgan SJ, Guillaume TJ

    JBJS case connector 2026; (16(1)) doi:e25.00477.

    PMID: 41723865

This page provides educational guidelines for building a care team for Multiple Osteochondromas. It is for informational purposes only and does not replace professional medical advice or consultation with qualified healthcare providers.

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