My 16 year old daughter was recently diagnosed with a Double Aortic Arch/Vascular Ring. She has been through all testing and will now have a broncoscopy done tomorrow. She has a very rare Auto Immune disease called Wegener's Granulomotosis. She has had over 11 surgeries on just her trachea. They need to go in every 6-8 weeks to dialiate her trachea. Recently her ENT noticed a second lower stenosis in her trachea. She has wheezing, trouble swallowing and coughing up flem, coughing, stridor and fainting. They were so sure they were going to do the cardiac surgery. We even had the cardioligist tell us that the surgery schedular will be calling us. He then called a week later and said that they decided they do not need to do the procedure after looking at her MRI angiogram again. He said she is ok and can participate in ANY activity and her fainting is from just being a teenager. I am complety frustrated and scared for my daughters life. This cardioligist was an assistant to one of the best pediactric cardiologist in Colorado. Should I get a second opinion? Is there someone out there that can guide me where to go? Should I take her out of State? We have taken to the Cleavland clinic before. Should we take her back? Help. Thank you
I am not clear on your question: does she have a vascular ring or not? If she has pre-existing tracheal narrowings due to her auto-immune disease, independent of a vascular ring, perhaps they feel that the narrowing caused by a ring is not significant and that repair would be unlikely to change her airway status. You said they said the MRI was OK....so not sure if the ring was a correct diagnosis or not. Fainting would not likely be associated with a vascular ring. That usually has other causes such as inadequate fluid intake and low blood pressure.
Yes, she does have a vascular ring. They have said everything you are saying which is somewhat relieving coming from an outsider. Last week she had another dialation on her trachea, while they were in there, they also did a broncoscopy. They did see the Ring pulsating on the trachea. We see another Cardiologist next Wednesday. I will not know if they will be doing surgery until next week. My concern is that my daughter has an Auto-Immune disease, 1 in a million children get this. I am scared and not confident that this ring could kill her. I don't want my child to be another statistic. I thank you for your time and expertise. I do feel a little better hearing about the same thing from you.
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