As many of you already know, I am having a second opinion from Boston’s Children’s Hospital for my 11 yo daughter who was diagnosed with Chiari in August 2019. The doctor that is assigned to gathering all her medical records for BCH reaches out to me with what seemed like urgency (3 phone calls and numerous emails back and forth) today to make me aware of something that caught her attention while reviewing Hope’s records. Hope has complained of chest pain and shortness of breath since day 1 of her diagnosis ( just one of a multitude of her symptoms). Apparently at one of our visits at ———— Hospital, an EKG was done and the person ( not sure yet if it was a cardiologist ) who read the EKG, noted that she had “borderline long QT”. We have seen a cardiologist since then where they did an ECHO of her heart and said everything was fine. The doctor assigned to her records for BCH asked me if I was told about this finding in her EKG and if the cardiologist had performed another. In both cases, my answer was no. No one mentioned anything abnormal about her EKG, nor did the cardiologist we saw do another. Of course I was not familiar with this terminology but knew from the urgency of the doctor’s insistence that she needs to be seen by a cardiologist and have another EKG done, that it must be significant. I am still a little shocked by what I have read. Of course, I will be on the phone with her pediatrician in the morning to get her set up for another EKG. I’m curious if anyone else here has had a similar experience with long QT found through an EKG and if so, is this Chiari related? Needless to say, I am terrified even more than I have been— until tonight, I didn’t think that was possible. I hope it was a mistake, a misread, anything else but a heart issue on top of everything she is already going through. Any input you can offer me would be greatly appreciated. As always, sending prayers and love to everyone here
Take a deep breath.
A large part of the Chiari journey is ruling out other bodily systems and making sure a patient is otherwise health. A long QT is something to check out for sure, but note that the report said “borderline”. I won’t pretend to know anymore! More investigation is good for better clarity on your daughter’s health status. It is also amazing all the little things in the body that are uncovered through intensive testing.
It sounds like a good thing that medical folk for the second opinion are being very thorough and checking things out. Also know that medical folk are quick to pounce on something that they know about and understand - long QT. If your daughter does have heart concerns know that it is treatable and it is good to know about it if she goes ahead with any type of surgery.
You and your daughter will get through this and remember Who you are leaning on. Deep breath
Thank you @gabby_jazzypants. My intelligent mind knows you are exactly right… unfortunately, my less intelligent emotional mom brain is a little worried. I will definitely agree that I’m thankful for the thoroughness they are offering. And, more importantly, as you said I know from whom my strength comes from and know He ultimately is in control. Please forgive my humanness, I fail often and am thankful for His grace that is sufficient! I’m also thankful for you and your level head in my time of need. Thank you! God bless
Update: We had the EKG done today and should have results in a few days. We also secured an appointment March 16 for the cardiologist. Very thankful that they could get us in so quickly.
Hi, I also had a heart issue diagnosed (during pregnancy, which was also when my Chiari symptoms progressed), although what I had was SVT (supraventricular tachycardia). I have read that tachycardia is a common symptom of chiari so I would guess that it wouldn’t be too far fetched to connect any other heart related arrhythmia to chiari. Chiari malformation is right near the hypothalamus in the brain which controls our most basic functions (so breathing, appetite, peeing, heart beat, temperature regulation) so I’ve come to realize that pretty much any symptom can be related to Chiari, it may not be the cause, but I can’t see how it could ever be ruled out. An aside: I was told by my cardiologist definitively that tachycardia is not related to Chiari (that it was just another unfortunate abnormality I was born with), shortly after I read in a Chiari article that tachycardia was listed as one of the most common symptoms…
You are dealing with a lot right now. I wish you and your daughter strength and good health and strong spirits! Keep following your gut and listening to your daughter (she knows her body best).
A tip: when my heart would beat too fast or abnormally the head cardiologist told me to press on the big nerve in my neck (supposedly that regulates the heart beat).
I also have a suggestion, if you don’t mind? I would write down her symptoms from head to toe daily, even throughout the day. You may do this already or have done this already. I find it gives doctors a better idea of everything that is going on and I find it helped me connect things and understand them more (I had pages worth of symptoms).
Best of luck mom!
Thank you so much for your input. She has also been diagnosed with tachycardia!!! I’ve been keeping a calendar with every symptom, days of school missed, pain levels and meds since August last year . I also have a binder with every doctor discharge or summary plus her diagnoses, homebound and 504 plans for school, test results— everything! I knew in the beginning this was BIG and far too much for me to remember Thank you so much for the advice. One question? Which nerve in her neck??