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Suggest Remedies For Joints Pain When Diagnosed With Goldenhar Syndrome

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Posted on Fri, 24 Mar 2017
Question: my daughter is 35 and has goldenhar syndrome
over the past couple of years she has fallen a couple of times
now she has lots of pain in various places , her shoulders joints etc she thinks she has broken bones
daily she has pain in joints fearful of not walking
nothing wants to stay in place
feels lie a severely jammed tailbone
she is 4ft 11 and weighs 92 pounds
not sure of the specialist to consult with
doctor
Answered by Dr. Diptanshu Das (22 minutes later)
Brief Answer:
Consult an orthopedician as well as a physical therapist.

Detailed Answer:
Thanks for asking on HealthcareMagic.

Goldenhar syndrome or Oculo-Auriculo-Vertebral (OAV) syndrome is a rare congenital defect characterized by incomplete development of the ear, nose, soft palate, lip, and mandible. Since the vestibular organ (located in the inner ear) is affected, balance is affected and that explains her falls.

Treatment is multifactorial but I think that you should see an orthopedician as well as a physical therapist.

Feel free to write back.

Regards
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Diptanshu Das (13 minutes later)
has seen physical therapist
no help
what about when she says joints do not stay in place
and pain persits
doctor
Answered by Dr. Diptanshu Das (43 minutes later)
Brief Answer:
Not much options.

Detailed Answer:
Thanks for writing back. I understand the dismal situation but as the underlying cause is genetic, there is nothing to offer permanent relief. Unfortunately, even though an orthopedician or a physical therapist cannot do much, you would still need to follow up with them and try to improve the situation.

Give her paracetamol or acetaminophen for the pain. Hot compress should help.

Regards
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Diptanshu Das (16 minutes later)
is this common with goldenhar syndrome.
she has hearing only on one side but when she was born the doctor said taht she maybe would have more complications when she got older

of course older at that time i thought to be 60
not 35
and she has fears of being in a wheel chair , falling and lots of other things
doctor
Answered by Dr. Diptanshu Das (14 hours later)
Brief Answer:
Early intervention is essential

Detailed Answer:
Thanks for writing back. Sorry for the inadvertent delay in responding.

Unfortunately such things are common in Goldenhar. The possibility of subsequent complications is also present. However, early detection of functional impairments and early interventions would reduce the possibility of disabilities that could restrict her to wheelchair.

Regards
Note: For detailed guidance on genetic screening consult a genetics specialist

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
Answered by
Dr.
Dr. Diptanshu Das

Pediatrician

Practicing since :2005

Answered : 3875 Questions

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Suggest Remedies For Joints Pain When Diagnosed With Goldenhar Syndrome

Brief Answer: Consult an orthopedician as well as a physical therapist. Detailed Answer: Thanks for asking on HealthcareMagic. Goldenhar syndrome or Oculo-Auriculo-Vertebral (OAV) syndrome is a rare congenital defect characterized by incomplete development of the ear, nose, soft palate, lip, and mandible. Since the vestibular organ (located in the inner ear) is affected, balance is affected and that explains her falls. Treatment is multifactorial but I think that you should see an orthopedician as well as a physical therapist. Feel free to write back. Regards