Well, today went a totally different way than I expected, but in a good way!
Dr. Shafron remembered us from Madi's previous surgeries that he did (he did a few of her shunt surgeries when he and Dr. Moss were both still out of Phoenix Children's Hospital and Dr. Moss, our regular neurosurgeon, was gone. He didn't actually recognize Madi, of course, because she was only about a month old when he operated on her, but he recognized her name. He said he doesn't always recognize or remember names, but that for some reason ours stood out to him.
Dr. Shafron reviewed all of Madi's medical x-rays and MRIs over the last few years. He said that when he compared the MRI scan from when she was two to the MRI we just did a few months ago, her tethering was actually stable and he didn't see any significant changes. He also said her spine does not have the classic look of one with significant scoliosis. He could see both side of the spine, and the nerves were straight and not twisted around the spine at all. He said her ventricle size had very slightly increased since the last scan, but that it is very minor and he isn't too concerned since she is showing no signs of shunt malfunction.
I asked his take on surgery, as well as the approach he would recommend. He feels that there is no rush to do surgery, and in fact, he's not even sure she warrants a surgery. He said he feels like we need to get further x-rays to study her scoliosis. He said that we really need to figure out what degree she is, try to figure out if it's stable or if it is worsening, and then see if the orthopedic surgeon feels that a de-tethering surgery would really help her. He said they usually watch the spine carefully by using the same test and watch for change. He said since we don't have a baseline, we don't really even know if there is a change. He also said there are multiple things, like her syrinx or her Chiari II malformation, that could be causing the scoliosis as well. He basically said that he thinks the orthopedic surgeon would be the one to determine if she needs surgery or not, because he's not convinced she does. He also does not recommend an aggressive surgery when the time comes to de-tether her. He said that he only uses an aggressive surgery with a child that has had multiple de-tethering surgeries before and that has no movement at all in the legs. Because it would be Madi's first, and because she does have some movement and feeling in the legs and toes that you wouldn't expect for her level, he said that he would not want to do anything aggressive or permanent. That was music to my ears!!
Right now we have decided to put off Madi's surgery, get back in with Dr. Goggins, our orthopedic surgeon, and get some better, more accurate pictures of her spine, that include standing in her HKFOs with hips level, laying, and side views. Next we will determine where her spine really is at. At that point we will decide if he thinks she warrants surgery, or if watching her and continuing to carefully monitor her would be a better approach. Our appointment with Dr. Goggins is June 12th, so I hope to have so more information then.
Thanks so much for praying for our family. Please continue to pray for answers as we decide if she needs surgery or not, and also pray for clear x-ray photos so that we can get an accurate view of her spine and her scoliosis. I am so thankful, though, to have a good plan of action and to be able to have Dr. Shafron do the surgery so that we can have a conservative surgery, and still be in Phoenix. I am so thankful for the answers we got today!!
Dr. Shafron remembered us from Madi's previous surgeries that he did (he did a few of her shunt surgeries when he and Dr. Moss were both still out of Phoenix Children's Hospital and Dr. Moss, our regular neurosurgeon, was gone. He didn't actually recognize Madi, of course, because she was only about a month old when he operated on her, but he recognized her name. He said he doesn't always recognize or remember names, but that for some reason ours stood out to him.
Dr. Shafron reviewed all of Madi's medical x-rays and MRIs over the last few years. He said that when he compared the MRI scan from when she was two to the MRI we just did a few months ago, her tethering was actually stable and he didn't see any significant changes. He also said her spine does not have the classic look of one with significant scoliosis. He could see both side of the spine, and the nerves were straight and not twisted around the spine at all. He said her ventricle size had very slightly increased since the last scan, but that it is very minor and he isn't too concerned since she is showing no signs of shunt malfunction.
I asked his take on surgery, as well as the approach he would recommend. He feels that there is no rush to do surgery, and in fact, he's not even sure she warrants a surgery. He said he feels like we need to get further x-rays to study her scoliosis. He said that we really need to figure out what degree she is, try to figure out if it's stable or if it is worsening, and then see if the orthopedic surgeon feels that a de-tethering surgery would really help her. He said they usually watch the spine carefully by using the same test and watch for change. He said since we don't have a baseline, we don't really even know if there is a change. He also said there are multiple things, like her syrinx or her Chiari II malformation, that could be causing the scoliosis as well. He basically said that he thinks the orthopedic surgeon would be the one to determine if she needs surgery or not, because he's not convinced she does. He also does not recommend an aggressive surgery when the time comes to de-tether her. He said that he only uses an aggressive surgery with a child that has had multiple de-tethering surgeries before and that has no movement at all in the legs. Because it would be Madi's first, and because she does have some movement and feeling in the legs and toes that you wouldn't expect for her level, he said that he would not want to do anything aggressive or permanent. That was music to my ears!!
Right now we have decided to put off Madi's surgery, get back in with Dr. Goggins, our orthopedic surgeon, and get some better, more accurate pictures of her spine, that include standing in her HKFOs with hips level, laying, and side views. Next we will determine where her spine really is at. At that point we will decide if he thinks she warrants surgery, or if watching her and continuing to carefully monitor her would be a better approach. Our appointment with Dr. Goggins is June 12th, so I hope to have so more information then.
Thanks so much for praying for our family. Please continue to pray for answers as we decide if she needs surgery or not, and also pray for clear x-ray photos so that we can get an accurate view of her spine and her scoliosis. I am so thankful, though, to have a good plan of action and to be able to have Dr. Shafron do the surgery so that we can have a conservative surgery, and still be in Phoenix. I am so thankful for the answers we got today!!
