Hello Everyone,

My name is Demian and I have a 13 year old daughter named Abigail who has congenital scoliosis. She has a twin brother named Chandler and an older brother, Lucas, who will be 17 in October. She has several bone anomolies such as block, butterfly, and hemi vertebrae. She has been wearing a brace at night for much of her life. In April during her appointment we saw that the curves were staying the same at 43 bottom/40 top, but in July she was complaining about the brace not fitting right anymore. So we took her back in for a check and her upper curve had gone from 40 to 53 and is starting to show some signs of Kyphosis. Her ortho believes it is probably due to a wedge vertebrae and that she most likely will now need surgery.

So that said, we have started the process of setting up appointments with Dr. Glotzbecker who is in the same group as Dr. Emans at Boston Children's Hospital. The reason for Boston Children's is because of the other issues Abby has that have been treated. Abby has had a rough time from birth fighting her way through many medical issues.

Shortly after being born it was found that she had a laryngeal cleft anomaly that left her unable to eat until she was almost 3 years old. She instead was fed via a G-Tube which allowed us to use a big syringe to pump her milk directly into her stomach. She had a small surgery associated with that shortly after birth as well. It as during this time right after birth we saw the x-ray of her spine and the malformed vertabra from about T4 through T10. We were told not to worry about it too much as there were more pressing issues to deal with and that we would just start seeing an ortho for monitoring and treatment if necessary.

At the age of 5 Abby had a stroke one morning before school. It was found that her right carotid artery was mostly occluded, but none of the specialists could determine the cause. There were other issues found along with this but nothing definitive. Fast forward her 10th birthday where she had a smaller stroke T.I.A. or transient ischemic attack, that ended up with us flying to Boston to see their #1 ranked Neuro group. Turns out she has a crazy rare disease called MoyaMoya disease that causes the vascular system in the brain to deteriorate and fail. So Dr. Scott and Dr. Smith with the Neuro team there performed a 8+ hour surgery to route her temporal arteries on to the surface of her brain on both sides of her head to help fund her brain with blood. It was a success and she has been doing very well during these 3 years since the surgery. Because of her MoyaMoya her Neurosurgeon, Dr. Smith, needs to be involved and he does reccomend Boston Children's Hospital as well so everyone is on the same team to discuss her case. Thankfully they have such a good Ortho unit.

So, as I said above, I am waiting on Dr. Glotzbecker to call me back hopefully today to discuss her scans (X-Ray and CT) that I sent up last week. We live just north of Orlando, so it is always a big trip when we go up to see Dr. Smith and now we will see Dr. Glotzbecker as well. Her ortho down here has said that she will probably need rods (not sure what kind yet, just starting my research), and very possibly may need to have the wedge vertebrae removed. She did say however that she is speculating and that of course Abby's surgeon will have the final say.

Whew.... That is a lot to type.

I want to thank everyone here for their stories and information. I have been reading the forums for the last week or so just trying to wrap my brain around what is about to happen. I am pretty familiar with Boston Children's Hospital having been going up there for 3 years now and absolutely love them, but would love to hear any stories from others about their experience with the Hospital for scoliosis and maybe even Dr. Glotzbecker.


Demian