Question:
Hello everyone. Just thought with the holidays approaching us I would send an update. My son is doing great! After 15 months he can finally go to Gym at School He is thrilled. The Dr. says the Exogen Machine has worked wonders and now they may not do a 2nd surgery. This does mean that the rod plate and screws will stay in for life, but she is not seeing a reason to remove them at this point. we will probably do a small procedure to stunt his growth on the opposite hip but we are taking it a step at a time. I hope all of your children are doing great at this time. Happy Thanksgiving!!!
jonsmom
Answer:
Be very sure to take the drug Fosamax and not the infusions. The infusions are extremely painful during and afterwards for several days. I took 3 infusions of 90 of Aredia last year and thought I would not survive the first day each time.
Answer:
just wanted to send an update - went to doctor last week after 18 months jon is doing good - we will probably have surgery in august of this year to fix growth issues. but they have decided to leave the rod plate and screws in - at least for now dr wants the extra support that they give. the cyst part that regrew is not any bigger and all and all everything looks great. let me know how its going and how the surgery in june goes
jonsmom
Answer:
hi i have a son who has a cyst in his hip bone it was very big and he has broken it this was in march he is 7 now was 6 when we were told he may have cancer we have not been told much at all he hasnt been in school for 8 months for he has been to ill he is very white and tryed now they say he hasnt got cancer cos this one doctor in london looked at his mir results and said that its a bone cyst there has not been a byopis done on him i was pleased its not cancer but i dont under stand why they havnt done a byopis
he can only walk 6 streets up before he hurts so we are still using his wheel chair he has still got the cyst in his bone and there is talk about an op to remove it but that all it is talk no one is doing any think about it is this normal can any one tel me if this is how it goes we have asked the doctors what has he got and will it be with him all ways they just say they dont no what it is he got or how it will effect him in live please any one who have the same as may son let me no if this is right thanks
Answer:
My son had a (UBC) Unicameral Bone Cyst which was discoverd when he broke his hip/femur. It is a high break of the femur but not into the hip and socket. He was put in traction and immobilized until surgery. The cyst was removed and donor bone put in. This normally is radiated bone from a cadaver. Then a rod, plate and screws were put in to stabalize while healing.
It has been over a year and we still have the hardware. They will eventually remove the hardware when they feel that the bone can support the weight with out. A biopsy was done during surgery to be sure that the diagnosis was correct. We were never told that this was cancerous, but I do know other parents who were put thru the agony of thinking it was. The recovery time for this operation is approx 12 weeks 6 weeks no weight and 6 weeks
50/50 weight. Also physical therapy is done for about 10-12 weeks.
You should research UBC and then ask your doctors. UBC is basically bad bone
or bone that never devloped correctly. We were told people have this all the time but that it is more common in children and that we just had the misforture to have it in a bad spot. If this is UBC then the break cannot heal because of the tumor. This would explain some of the pain and exhaustion.
The tumor will eventually have to come out. Depending on the location of the break it is possible that because of your childs age they are wanting to wait. My son had to have his growth plate breached in order to repair the damage. I hope this information is helpful and I would love to hear from you again.
Jonsmom