Effects of Surgical Treatment

Surgery is not always needed. But if it is, surgical intervention can take several forms, from bone "stapling" or "8 plates" to allow growth on one side of the growth plate to catch up with the other side and thus straighten the leg, to osteotomies which are a surgical fracture of the bone to allow for realignment.  8 plates (so named because of the figure 8 shape of the plate) and bone stapling is only possible when there is still growing tme available. 

There are also a variety of immobilization procedures after the bone is surgically straightened. With a mor minor procedure such as 8 plates, the patient may only need to be on crutches for a time, whereas with an osteotomy the patient may require several months in a cast or with an internal rod or an external fixator.  The goal is to achieve straight legs, or as normal a gait as possible. An orthopedic surgeon performing any of these procedures should have experience in dealing with XLH patients, because bone healing can differ in important ways from that experienced by people with normal bone healing.

Although surgery can be painful, modern pain-relieving medications are available, and eventually it's the tedium of being in a cast or frame or on crutches that is remembered the most.

• Bone healing for XLH patients can take up to twice as long as for normal bone healing and may entail being in a cast or immobilized for several months.
• Surgery generally results in straight legs and improved self-confidence, but sometimes regression can occur years later.  More surgery may be required.
• It's crucial that the specialist managing XLH care in a growing child or adolescent keeps a close eye on growth indicators so that medication dosages keep up with the demands of bones during periods of more rapid growth.
• Treatment must be continued after bone straightening procedures in someone who has not reached final growth, or the bones will most likely bend again.  Surgical treatment in a child is not a substitute for medication treatment.
• People with XLH are more prone to parathyroid hormone elevations, and sometimes, especially if the PTH level is not closely monitored and treatment adjusted to keep it within normal limits, the parathyroid glands can eventually become so overactive that PTH is over-expressed regardless of the calcium level in the blood.  Hypercalcemia can develop as a result, which can cause many problems. In this event, surgical removal of most of the parathyroid glands (which sit in the neck right beside the thyroid gland) may become necessary in order to restore normal levels and prevent further damage to bones and organs. It's imperative in this case to locate an acknowledged expert in endocrine surgery. Surgeons without enough experience in parathyroid procedures may not recognize parathyroid tissue or may not appreciate the different surgical and post-op needs of the secondary hyperparathyroidism patient.

© 2011, The XLH Network Inc.
The authors of this web site are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences. Additionally, in some cases anecdotal information is provided by subscribers of the F-HYPDRR group, a mailing list for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer. 

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