Paget's Disease of Bone (Osteitis Deformans) C&P Exam Prep

Range of Motion (ROM) - Affected Joints and Spine

What it measures: Degree of motion limitation in joints adjacent to Pagetic bone (e.g., hip, knee, spine) caused by secondary osteoarthritis, bone deformity, or pain. Measured in degrees using a goniometer.

What to expect: Examiner will measure active ROM (you move the joint yourself), passive ROM (examiner moves it), and may assess weight-bearing versus non-weight-bearing positions per Correia requirements. Testing may include the spine (flexion, extension, lateral flexion, rotation), hips, and knees depending on affected areas.

Pain considerations: Per DeLuca v. Brown, the examiner must record the degree of ROM at which pain begins and any additional limitation caused by pain, weakness, fatigue, or incoordination. Explicitly state: 'I experience pain at [X] degrees of motion, and after walking or repetitive use, my motion is further limited and my pain increases significantly.'

Gait Assessment and Limb Length Discrepancy

What it measures: Ability to ambulate safely and without assistive devices; presence of antalgic gait, bowing deformity causing leg length discrepancy, and fall risk.

What to expect: Examiner will observe you walk, assess for limp, bowing, or use of assistive devices. Leg length may be measured if bowing of femur or tibia is present. Note any uneven gait, pain with weight-bearing, or need for orthotic support.

Pain considerations: Explain that on bad days, weight-bearing through Pagetic bone causes severe deep, aching pain that forces you to limit walking distance significantly. Describe the worst occasion when ambulation was most severely affected.

Alkaline Phosphatase (ALP) and Bone Turnover Markers

What it measures: Serum alkaline phosphatase is the primary laboratory marker reflecting disease activity and extent of Paget's Disease. Elevated ALP indicates active bone remodeling. Urinary hydroxyproline or serum CTX/P1NP may also reflect disease activity.

What to expect: Examiner will review any available laboratory results in your claims file or treatment records. If recent labs are not available, they may order them or note their absence. Ensure your most recent ALP results are included in your records.

Pain considerations: Emphasize that even with biochemical control, Pagetic bone already deformed or damaged continues to cause chronic pain, mechanical joint problems, and neurological complications independent of ALP levels.

Bone Scan (Radionuclide Scintigraphy)

What it measures: Extent of skeletal involvement - identifies which bones have active Pagetic lesions. Critical for establishing polyostotic versus monostotic disease and for identifying sites at risk for fracture or malignant transformation.

What to expect: Examiner will review existing bone scan results in your records. The DBQ has a specific field for bone scan date and results. Ensure your most recent bone scan is in your claims file.

Pain considerations: Correlate each bone scan positive site with specific pain locations and functional limitations you experience. This helps the examiner document each affected anatomical region accurately.

X-Ray / MRI / CT Imaging of Affected Bones

What it measures: Structural changes: cortical thickening, trabecular coarsening, bone enlargement, lytic or sclerotic phases, deformity (bowing), fracture lines, secondary osteoarthritis, and early malignant transformation (osteosarcoma).

What to expect: Examiner will review existing imaging in your records and may order new films. The DBQ has fields for X-ray, MRI, CT, and bone biopsy results. Bring all imaging records and radiology reports.

Pain considerations: Use imaging findings to anchor your pain complaints anatomically. For example: 'The bowing of my right femur shown on X-ray causes me to walk with a limp and puts abnormal stress on my right knee, causing constant aching pain rated 7/10 on my worst days.'

100%

Active malignant neoplasm (osteosarcoma or other sarcomatous transformation of Pagetic bone) - rated 100% while active, with a mandatory VA exam scheduled 6 months after completing treatment. Alternatively, severe widespread Paget's Disease with major complications equivalent to total disability (e.g., paraplegia from spinal cord compression, high-output cardiac failure, complete bilateral hearing loss from skull involvement) may support a 100% rating via TDIU or SMC provisions.

From 38 CFR: DC 5016 rates Paget's Disease analogously to the bones involved or complications present. Malignant transformation is rated under the bone neoplasm provisions (DC 5012-5015 range) at 100% while active. Total occupational and social impairment from combined orthopedic and neurological sequelae may support TDIU.

60%

Severe Paget's Disease with significant structural deformity, multiple affected bones, and substantial functional impairment. Includes significant secondary complications such as moderate hearing loss from skull involvement, secondary severe osteoarthritis of major joints, recurrent pathological fractures, significant spinal disease with radiculopathy, or inability to ambulate without assistive devices for extended distances. Analogous rating based on affected bones and resulting functional impairment.

From 38 CFR: Under DC 5016 and analogous codes, severe functional impairment from deformity, secondary arthritis, fractures, or neurological complications of Pagetic bone disease at major joints or the spine supports ratings in the 40-60% range depending on the body part involved and the specific analogous DC applied.

40%

Moderate Paget's Disease with documented structural changes in weight-bearing or functionally significant bones, moderate pain, and measurable functional limitations. Includes moderate secondary osteoarthritis, intermittent radiculopathy from spinal involvement, documented limb deformity causing gait abnormality, or moderate restriction of motion at major joints. Disease may be partially controlled with bisphosphonate therapy but structural damage and pain persist.

From 38 CFR: Moderate limitation of motion, intermittent incapacitating pain episodes, and documented structural deformity from Paget's Disease in weight-bearing regions support ratings in the 20-40% range under analogous orthopedic diagnostic codes.

20%

Mild-to-moderate Paget's Disease with confirmed diagnosis, some pain, and mild functional limitation. Disease may be monostotic or limited polyostotic involvement of non-critical bones. Symptoms are manageable with medication but pain is present and function is mildly impaired. Some ROM restriction may be present at affected areas.

From 38 CFR: Mild functional impairment with confirmed diagnosis and objective findings on imaging and laboratory tests supports a minimum compensable rating. Even when symptoms are mild, structural bone changes and persistent pain should be accurately documented.

Bone Pain

How to describe it: Describe the exact location of pain (skull, spine, pelvis, femur, tibia, etc.), the character of the pain (deep, aching, boring, constant vs. intermittent), severity on a 0-10 scale on your worst day, and what makes it worse (weight-bearing, activity, weather changes, nighttime). State how long pain episodes last and how frequently they occur.

Example: On my worst days, the deep aching pain in my right femur and lower back rates 9 out of 10. The pain wakes me from sleep at night and I cannot stand for more than 10 minutes. I require prescription pain medication plus a heating pad and I cannot leave my home. These worst days occur approximately 3-4 times per month and last 1-2 days.

Examiner listens for: Specific anatomical locations, chronic versus acute pain pattern, nocturnal pain (classic for Paget's), pain with weight-bearing, pain at rest, medication requirements, frequency of worst episodes, and functional impact during pain episodes.

Avoid: Do not say 'the pain is manageable' or 'I just push through it.' These phrases underrepresent your actual disability level. Instead, describe the specific accommodations you make and what you cannot do because of the pain.

Bone Deformity and Gait

How to describe it: Describe any visible changes in bone shape: bowing of legs, enlarged skull, spinal curvature, chest wall deformity. Explain how deformity affects your walking - limping, uneven leg length, instability, increased fall risk. State how far you can walk on a typical day and your worst day before pain or fatigue stops you.

Example: My right leg bows outward significantly and is about an inch shorter than my left. On bad days, after walking one city block I develop severe right hip and knee pain and must stop and rest for 20 minutes before continuing. I have fallen twice in the past year due to instability from the leg length difference. I use a cane every time I leave the house.

Examiner listens for: Objective evidence of deformity, functional limitation of ambulation, fall risk, assistive device use, correlation between imaging findings and reported symptoms, and consistency between gait observed during exam and reported limitations.

Avoid: Do not leave your cane in the car or attempt to walk without it during the exam to appear stronger. Use your assistive device as you normally would. Do not say you 'get around fine' if you actually require a cane or have walking limitations.

Neurological Complications

How to describe it: If skull involvement is present, describe any hearing loss (unilateral or bilateral), tinnitus, headaches, vision changes, or cranial nerve symptoms. If spinal involvement is present, describe radiating pain, numbness, tingling, or weakness in extremities. Describe when symptoms began, whether they are progressive, and how they affect daily function.

Example: The Paget's has affected my skull and I have lost significant hearing in my left ear - I cannot follow conversations in any group setting and struggle even one-on-one without hearing aids. On my worst days, the pressure headaches from skull thickening are severe enough that I cannot read, watch television, or concentrate on anything. My spine involvement causes pain that shoots down both legs when I walk more than a few steps.

Examiner listens for: Specific neurological deficits correlated with documented Pagetic involvement of skull or spine, documented hearing testing results, presence of cranial nerve findings on examination, radicular symptoms, and any progressive neurological deterioration.

Avoid: Do not minimize hearing loss by saying 'I just turn up the TV.' Describe the full impact: missed conversations, social isolation, difficulty at work, safety concerns. For spinal symptoms, specify that the leg pain, numbness, or weakness is directly connected to your Paget's spinal involvement.

Fatigue and Functional Limitations

How to describe it: Paget's Disease causes systemic fatigue due to the high metabolic demands of abnormal bone remodeling. Describe daily fatigue level, how much activity you can perform before exhaustion, impact on employment, self-care, household activities, and social functioning. Include how fatigue interacts with pain to compound your disability.

Example: Even on relatively good days, by mid-afternoon I am exhausted and must lie down for 1-2 hours. On bad days, I am fatigued from the moment I wake up and cannot complete basic household tasks like cooking or laundry without sitting down to rest multiple times. This fatigue has prevented me from maintaining full-time employment.

Examiner listens for: The DeLuca factors - fatigue, weakness, and pain on repetitive use - must be documented. Examiner should note functional limitations beyond what a single ROM measurement captures, including how your function degrades over the course of a day or week.

Avoid: Do not say 'I manage okay' or 'I stay busy.' This obscures how much energy management and accommodation you require to function. Be specific about what you can no longer do compared to before your condition worsened.

Pathological Fracture History

How to describe it: If you have experienced fractures of Pagetic bone, describe each occurrence: which bone, date, mechanism (minor trauma or spontaneous), treatment required, recovery time, and any residual impairment. Explain that Pagetic bone is structurally abnormal and fractures at lower force thresholds than normal bone.

Example: In [year], I fractured my right femur with minimal trauma - I simply stepped off a curb. This required surgical repair with an intramedullary rod. I was non-weight-bearing for 4 months and have never regained full strength or pain-free ambulation in that leg. I live in fear of another fracture.

Examiner listens for: History of pathological fractures, treatment required, residual impairment from fractures, current fracture risk, and how fracture risk affects daily activity choices and functional capacity.

Avoid: Do not omit past fractures because they happened years ago. All fractures of Pagetic bone are relevant to the current disability picture, especially if they resulted in surgical treatment or lasting functional impairment.

Treatment Effects and Medication Side Effects

How to describe it: Describe all treatments you have received: bisphosphonate infusions or pills (zoledronic acid, pamidronate, alendronate, risedronate), pain medications, surgical procedures, and their effects. Describe side effects including jaw osteonecrosis risk, esophageal symptoms, flu-like reactions after IV bisphosphonates, and any surgical complications.

Example: After each IV zoledronic acid infusion I experience 2-3 days of severe flu-like symptoms - fever, chills, bone pain flare, and complete inability to function. I must plan ahead and arrange help at home during these post-infusion days. The medication is necessary but temporarily disabling.

Examiner listens for: Active treatment status, treatment response (ALP normalization versus continued elevation), treatment complications, and whether symptoms persist despite optimal treatment - indicating structural rather than purely metabolic disability.

Avoid: Do not say treatment has 'fixed' the problem. Bisphosphonates control disease activity but do not reverse structural deformity, secondary arthritis, or established neurological damage. Clearly state what symptoms remain despite treatment.