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Genetic and Rare Diseases Information Center (GARD)

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Sacrococcygeal Teratoma

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Your Question

I had a sacrococcygeal teratoma removed when I was very young.  I have since had numerous surgeries to remove scar tissue and a total hysterectomy.  I have been trying to get information as to what problems I may have because of this history.  I have started having a lot problems and I now have to walk with a cane.  I also have had horrible lower back pain for years - could this be due to this rare condition?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What are the possible long-term effects of being diagnosed with a sacrococcygeal teratoma?

Because a sacrococcygeal teratoma occurs when a fetus is developing and surgery is needed to remove it, there can be long-term effects of this tumor.  The causes of long-term effects are thought to be the teratoma pressing on nerves and tissues thereby altering the normal development of these body structures, or the nerves and tissues may be disturbed during surgery to remove the teratoma.[1]  The effects may include difficulty controlling the bowels and urination, weakness in the legs, and issues with the spine.[1][2][3]  These symptoms may not become apparent until many years after surgery to remove the teratoma.  For example, one study found that 22% of individuals who were previously diagnosed with a sacrococcygeal teratoma experienced lower back pain and stiffness beginning in adolescence.[3]
Last updated: 7/14/2011

  • Schmidt B, Haberlik A, Uray E, Ratschek M, Lackner H, Höllwarth ME. Sacrococcygeal teratoma: clinical course and prognosis with a special view to long-term functional results. Pediatric Surgery International. 1999; 15:573-576. Accessed 7/13/2011.
  • Zaccara A, Iacobelli BD, Adorisio O, Petrarca M, Di Rosa G, Pierro MM, Bagolan P. Gait analysis in patients operated on for sacrococcygeal teratoma. Journal of Pediatric Surgery. 2004; 39:947-952. Accessed 7/13/2011.
  • Lahdenne P, Heikinheimo M, Jääskeläinen J, Merikanto J, Heikkilä J, Siimes MA. Vertebral abnormalities associated with congenital sacrococcygeal teratoma. Journal of pediatric orthopedics. 1991; 11:603-607. Accessed 7/13/2011.