We met the first doctor directly after x-rays. He immediately noticed Rayden had significant anterolateral bowing of both tibia's. He also mentioned that his knees do not fully extend but thought that could be an illusion because the bowing is so bad. After he found out that there was no real plan at UNC for the bowing he seemed upset and stated that it definitely needs to be addressed. He thought it was best for us to see their pediatric orthopaedic that specializes in spina bifida, Dr. Peter Stasikelis.
After examining Rayden, Dr. Stasikelis stated that in people with spina bifida the muscles and tendon's end up serving as ligaments that hold the foot in the deformed position. "They never serve a useful function just an EVIL one." He stated that all the doctors around the country agree the only thing to do is find the tendon and cut it out so it won't grow back. He says its probably by far the most common operation in spina bifida that they do. He stated how much he admired UNC's patience with Rayden's feet (14 sets of casts) because he would have cut the tendon's a long time ago! He said it's a fairly straight forward procedure and thankfully Rayden won't feel much discomfort because of his paralysis. He would also recommend cutting his posterior tibial tendons and several other tendons in and around the ankle as well. He also reminded us that we should probably have UNC x-ray the bowing of the legs. He doesn't think it represents the usual bad things because in SB strange things can happen but it definitely needs to be addressed. He also wanted me to tell them that the position of the ankle seems to be a little down/posterior and they will want to adjust for that as well. He said Rayden's feet are really too severe to even go into the AFO's that he is currently wearing so he would chalk this up to a "no brainer!" Rayden clearly needs this surgery or he will not be able to walk.
He continued by saying Rayden will probably be in braces forever more after the surgery. He feels that his quadriceps are "iffy". He doesn't have much in the line of hamstring muscles and no motor function in his feet at all. He says Rayden will need the braces to provide stability under him in order to walk and arm crutches to help support his weight. He doesn't feel that Rayden will ever be able to walk without the help of braces.
Of course he had to add his spill on the future as well... He thought it was important that we know the future so we don't experience a "second loss." Generally when kids turn 10 or 11 years old they will not be able to support the weight of their bodies because their body weight is increasing to full man weight but their muscles are NOT. It will become harder and harder for him and he says Rayden will want to keep up with his peers so he will choose to go into a wheelchair. He didn't want us to blame ourselves when this happens or feel like we did something wrong. (I know he meant well but that's not what I drove 5 hours to hear. It's not like we are going to love him any less. NO, I didn't want to hear that, but ultimately we will accept whatever plan God has in store for Rayden's life.)
We have an appointment with Duke next week for a 3rd opinion.
After examining Rayden, Dr. Stasikelis stated that in people with spina bifida the muscles and tendon's end up serving as ligaments that hold the foot in the deformed position. "They never serve a useful function just an EVIL one." He stated that all the doctors around the country agree the only thing to do is find the tendon and cut it out so it won't grow back. He says its probably by far the most common operation in spina bifida that they do. He stated how much he admired UNC's patience with Rayden's feet (14 sets of casts) because he would have cut the tendon's a long time ago! He said it's a fairly straight forward procedure and thankfully Rayden won't feel much discomfort because of his paralysis. He would also recommend cutting his posterior tibial tendons and several other tendons in and around the ankle as well. He also reminded us that we should probably have UNC x-ray the bowing of the legs. He doesn't think it represents the usual bad things because in SB strange things can happen but it definitely needs to be addressed. He also wanted me to tell them that the position of the ankle seems to be a little down/posterior and they will want to adjust for that as well. He said Rayden's feet are really too severe to even go into the AFO's that he is currently wearing so he would chalk this up to a "no brainer!" Rayden clearly needs this surgery or he will not be able to walk.
Of course he had to add his spill on the future as well... He thought it was important that we know the future so we don't experience a "second loss." Generally when kids turn 10 or 11 years old they will not be able to support the weight of their bodies because their body weight is increasing to full man weight but their muscles are NOT. It will become harder and harder for him and he says Rayden will want to keep up with his peers so he will choose to go into a wheelchair. He didn't want us to blame ourselves when this happens or feel like we did something wrong. (I know he meant well but that's not what I drove 5 hours to hear. It's not like we are going to love him any less. NO, I didn't want to hear that, but ultimately we will accept whatever plan God has in store for Rayden's life.)
We have an appointment with Duke next week for a 3rd opinion.
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