Name :    Lynne Byrne

E-mail :

Adult:  57 years old   

Location:  Gladstone, Oregon

Area(s) affected:  Right tibia, big toe and ankle

Personal History:

My name is Lynne Byrne and I am 57 years old. I live in Gladstone, Oregon, near Portland, Oregon. My affected area is right tibia and it has shown deformity also in the right big toe and ankle.  I had only a bump of bone that was noticed about age 15. I had a biopsy at age18 and was only told it wasn't cancer.  I was asymptomatic unless i hit the bone bump directly and it resulted in severe pain. During my first pregnancy at age 30 it was a knee aching pain that did not improve post partum. I went to multiple medical doctors and had no clear diagnosis. I had right knee arthroscopy at age 40 followed by physical therapy for three months. With no improvement I continued seeing medical doctors and at age 54 the department chair for orthopedics at Oregon health science center saw an updated X-ray and was the first to say it looked like Melorheostosis. At age 54 I had right knee arthroscopy with same orthopedic surgeon who did the first one, and it was followed by three months of physical therapy thee dayside week. My range of motion improved, but once the therapy stopped, the mobility decreased. I have been unable to bend my knee for about 20 years now. I have tried sleeping medication, muscle relaxants, acupuncture, a tens electrical unit, soft tissue massage, flexology, ice compresses and heating pads. Nothing relieves the pain and I wake up most nights after falling asleep about an hour later with a leg spasm and pain that lasts about two hours. I am unable to find a position or remedy or eve pressure point to allow me to fall back asleep until the two hour period of pain lessens. It is never gone, just less intense than during a spasm period.  Lynne Byrne


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