Discussions By Condition: I cannot get a diagnosis.

Help! My 15 yr old has Multiple Tumors.

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • October 28, 2009
  • 06:57 AM

Hello. My son is 15 years old and 5 months. He began by having a pathological fracture on 6.07, when he had just turned 13 yrs old. They said he had a Non Ossifying Fibroma that had encompassed almost 100% of his bone marrow, over 4 inches or more in length at the time of the fracture. It was on his Left femur, approximately 2 1/2 inches above his knee. The cortex was bowing out because of the tumor. It "severed completely in half" at the time of the fracture, they scooped it out completely, did not do a bone graph or bone marrow transplant. They left it hallow and closed it up. They then put a nine inch plate and seven screws to support it in its place. This was done by the orthopedic surgeon that was on call at Sierra Vista Hospital. Upon follow up his primary pediatrician recommended we follow up with a pediatric orthopedic surgeon (P.O.S.). Since then that is what we have been doing. A year later my son had his plate and screws removed in 6.08 for a second surgery. Since then we continued to get x-ray follow ups every three months. Then after six months we began to have pain in his right femur about four inches above his knee. I knew then that he probably had another tumor because before he had his left femur break his also had complained of pain. At the time we did not know however there was a tumor (before first surgery). We just had him ice it, lay off sports for a week or so then he seems o.k. When they did x-rays on his right femur he indeed had a hairline fracture there and what looked like on the x-ray, according to his P.O.S., there was another NOF. It was much smaller however, only encompassing approximately 40% of the inside of his marrow, 3 inches in diameter. The Doc ordered a MRI, where he discovered swelling of the tissue, and nerves due to the NOF. My son continued to have pain until in 6.09 he had surgery on his right femur removing the NOF. This time they did a bone marrow transplant using his own marrow from his right hip, and an artificial bone graphing was also done. During follow up on x-rays his left and right femur they found very small, what again the doctor believed to appear as NOF's on both his right and left hips. My son however, has not been made aware of this, because when my son asked "what are those" the doctor chose to tell him nothing. Now my son is now experiencing pain in his right hip. Tomorrow we are going for x-rays to follow up again for a routine check. He is getting his right and left femurs x-rayed to include both hips as well. Then we meet with the P.O.S. to discuss x-rays, how his right and left femurs are healing and now possibly to discuss tumor in his right hip. On Thursday I made an appointment with his regular pediatric doctor. I want to get a referral to a Pediatric Orthopedic Pathologist who can thoroughly diagnose him with 100% accuracy. All the research I have done states that an NOF is asymptomatic, and typically you will not see a patient with multiple NOF, and especially I have not read any case studies where they have caused multiple fractures due to an NOF. Everything I have been researching suggests that with symptoms of pain that is a red flag to the diagnosis being incorrect because NOF do not cause pain alone. I have been reading about PFD, polyostotic fibrous dysplasia, and many other secondary diagnosis' also. Do you have any advice? A good referrel? Web-sites to research? From a very concerned mother. May God bless you for any advice you may give!

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.

Signs of a Psoriasis Flare

Know the five types of psoriasis and how to spot flares.

How Diabetes Medications Affect Your Appetite

Newer diabetes treatments can suppress appetite and aid weight loss.

What to Do For Dry Mouth

Try these tips to get your salivary glands back into action.

The Painkiller – Constipation Connection

Constipation is a common side effect of opioid and narcotic pain medicines.

9 Signs of Sensitive Skin

Is it sensitive skin or something else?