Shriner's Appointment early - Surgery planned

Shriners called us and had a cancellation so we got in early - this past Tuesday! We were so happy! We were really pleased with the surgeon and his knowledge and experience with Perthes. He feels Simon needs the femural osteotomy. We tried to hear everything the doctor told us, while Simon was bouncing loudy around the room (after we had been there for a few hours....) so we are still trying to remember everything and will continue to ask questions.

Between the Seattle Orthopedist and the Shriner's MD - (Dennis Roy) we have learned that Simon has a severe case of Perthes - especially for his age. He has lost some containment of the femural head. The ball or head has also become very enlarged and is about 3 times the size of ball on the normal hip. We could clearly see this on one slide of the MRI.

Dr. Roy confirmed that there is no one easy answer or solution with Perthes. Doctors all over the world are trying different strategies at different times to get the best outcomes for these kids. Nothing can cure or stop the process of Perthes. The intervention is just trying to fix the "fallout" so to speak. His decision to do the osteotomy is basically based on his long time experience with the disease against the best outcomes he has had. He feels that doing the surgery now will possibly prevent doing "salvage surgery" which is the worst case scenario with Perthes and what often happens with kids who aren't diagnosed until a later age. This is when the bone has already grown in (and not in a good way) and they try to make the best out of the situation - but often have poor outcomes.

By doing the osteotomy now, they hope to position the head into the socket and get the bone to grow back in the best shape possible. The surgery entails breaking the femur and angling the top part of the femur into the hip socket and putting a plate on the femur where they break it. In about 4-5 months, they remove the plate. He will have a spica cast most likely for 6 weeks post surgery (this is the cast that goes from toes to arm pits). When the cast comes off, he will go back into the hospital for a few days of Rehab and then have several weeks where he will need to rebuild his muscles to walk again.

After this is all said and done, the doctor said he usually lifts a lot of the restrictions on activity. Yeah, there is some hope on the horizon. One downside, is that in 4-5 years when the bone is all grown in and he begins to grow more, they will have to re-evaluate if the head is too entrenched into the hip socket which can happen and impede movement. If this happens, he will need to go through the reverse surgery (breaking of the femur to pull it back out some....). Hopefully this won't be the case.

So, we felt really good about our experience at Shriners. They were so nice and patient with Simon. He is also doing a few extra tests to confirm that he doesn't have any other type of dysplasia going on because of of few unusual aspects of his case (such as his small size .... he is only in the 7th percentile height for his age and a few other bone abnormalities). However, he feels pretty confident it is Perthes and so do we. But it is nice to put our minds to rest as we move forward with such a big surgery to make sure it is not really something else happening.

So we are on a wait list for surgery. It can easily be 3 months away - and that is expedited in the Shriner's system. They provide all of their services for free - so there can be a wait for things. But their experience is fantastic and we feel it is worth the wait. He will be on a "short call list" in case another child has to cancel their surgery - so we will plan to be ready after Jan 1st.

In the meantime we are going to try and keep Simon as healthy as possible so when his surgery date arrives he is ready! We are also doing research on alternatives to the Spica cast - such as a hip spica brace and plan to talk to the Care coordinator at Shriners about this next week. Simon has a bad reaction to the Petrie cast because of his eczema and we feel a brace would save us all a lot of agony.

Stay tuned!!