Jean in Newcastle Posted January 21, 2017 Share Posted January 21, 2017 Any experience? What were the symptoms? Tests? Treatment? (I know what WebMD et. al. says. ). Further testing is in one week but symptoms are intensifying. I'm especially wondering what would cause you to jump the line to seek more immediate medical help. Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted January 21, 2017 Share Posted January 21, 2017 Look up the symptoms of heart failure and if you are seeing those, I would seek immediate attention. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted January 21, 2017 Share Posted January 21, 2017 Hope all is well. Quote Link to comment Share on other sites More sharing options...
magnificent_baby Posted January 21, 2017 Share Posted January 21, 2017 (edited) If the symptoms interfere with everyday activity I would try every avenue to get in sooner for testing. IME, shortness of breath and fatigue would be the main symptoms. An echo will be the first test, and where I work we can often squeeze patients in the same day. I would seek out the nearest large facility that deals with this frequently, including the initial echo. Other tests are possible such as a heart cath. I am thinking your DH is in healthcare, no? Is he able to listen for a murmur? If the murmur is significant or progressively worse than baseline, that would be concerning. Edited January 21, 2017 by magnificent_baby 2 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 21, 2017 Author Share Posted January 21, 2017 Dh is in healthcare. A murmur has been detected though it had not been detected by the cardiologist a year ago when she first started complaining of dizziness, almost blacking out, and skipping beats. Initial diagnosis was postural hypotension. She wore a holter monitor for a whole month and everything looked good. But fatigue is worse and now there is chest tightness, sharp pains in left shoulder and down her left arm. She has another appointment with the pediatric cardiologist in one week. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted January 21, 2017 Share Posted January 21, 2017 (edited) Goodness that's scary. I agree, try to push for an earlier appointment. And hugs Edited January 21, 2017 by OneStepAtATime 1 Quote Link to comment Share on other sites More sharing options...
athomeontheprairie Posted January 21, 2017 Share Posted January 21, 2017 My dbil had this. They did yearly tests. His junior and senior year of high school he was limited in physical sports (he was allowed to play football, but there were strict limits that the coaches followed). They tried to wait as long as they could before surgery. Which for him was the summer following high school graduation. He had pushed up his yearly test-if he hadn't he might not be with us. His heart had deteriorated a LOT over the spring. He had surgery. Now he's fine. He'll be on blood thinners for the rest of his life. He wanted to join the police force, but they denied him because of his heart condition. That's disappointing, but beyond that hes fine and lives a normal life. Keep the check ups. Don't skip them. 1 Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 21, 2017 Share Posted January 21, 2017 No knowledge but the title caught my eye, and I just wanted to send some hugs -- this sounds scary! 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 21, 2017 Share Posted January 21, 2017 Sharp pain, etc would have me calling the ped cardiologist's emergency line asking if that is ER worthy. You are already established there. 4 Quote Link to comment Share on other sites More sharing options...
Slache Posted January 21, 2017 Share Posted January 21, 2017 Follow your mommy gut. If you're asking if you should seek help then do it. Worst case scenario she's fine and you've wasted your time. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 21, 2017 Author Share Posted January 21, 2017 Follow your mommy gut. If you're asking if you should seek help then do it. Worst case scenario she's fine and you've wasted your time. And a lot of money. ;) But I get your point. 1 Quote Link to comment Share on other sites More sharing options...
ondreeuh Posted January 21, 2017 Share Posted January 21, 2017 (edited) Have you compared BP in the left arm and right arm? Or is it left arm and right leg? I think it's been done both ways on my kid. It's not a diagnostic test of course, but if there's a big difference then that would push you to treat it as an emergency. I'm sorry your dd has this concern. My son developed a coarctation of the aorta as a newborn, and he he had edema and diarrhea. He obviously couldn't tell us how he felt. He had an end-to-end anastomosis and then a month later a balloon angioplasty via catheter, and hasn't needed further treatment for that. He had a similar procedure in his superior vena cava much later due to a separate issue, and that went well too. Thank you for reminding me to look up our last PC appt - we are down to yearly appts now, and I've lost track of the schedule. Edited January 21, 2017 by ondreeuh 1 Quote Link to comment Share on other sites More sharing options...
Junie Posted January 21, 2017 Share Posted January 21, 2017 :grouphug: :grouphug: :grouphug: What are her symptoms today? If she is still dizzy and/or if she has pain shooting down her left arm, those would be the signals for me to take her to the ER. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 21, 2017 Author Share Posted January 21, 2017 :grouphug: :grouphug: :grouphug: What are her symptoms today? If she is still dizzy and/or if she has pain shooting down her left arm, those would be the signals for me to take her to the ER. She's off at her activities with strict instructions to let me know if there is pain. She was fine when she left. She's been having symptoms a couple times a week but not everyday. 4 Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 22, 2017 Share Posted January 22, 2017 Is the stenosis suspected or confirmed? Since you mentioned testing, I assume it's suspected. I am finding out that even cardiologists do not always seem to be up on all the ins and outs and relationships between heart issues, especially if those issues are spread out in the family and do not all present the same way. They see a single heart issue and don't always look broader. A cardiologist for one of my family members never bothered to ask questions to elicit relevant family history (it would not be obvious to the person getting the testing that other family members' history was relevant because it was "different"). The cardiologist also blew off this family member's serious issue and the fact that is increases risk factors for other family member (now my son is getting genetic testing for a similar issue, and I am in line for an echo too). If we were going on advice for the cardiologist alone, we would not have identified issues in my son. Worse yet, my family member's cardiologist didn't follow established protocol, nor did he give this family member sufficient information to advocate for their own health in an emergent situation. I would be looking at information about left-ventricular outflow tract obstructions, familial thoracic aortic disease, and biscupid aortic valve disease. These things overlap and intersect in families, and depending on the underlying genetics (of which they are many known variants and many unknown genes), they can sometimes skip around. http://circ.ahajournals.org/content/114/22/2412 http://www.umcvc.org/conditions-treatments/aortic-disease-faqs Basically one kind of aortic strangeness is reason to look at other family member and/or ask about genetic testing. Sorry to overstep a bit, but I have been barraged lately with news of people I know getting lots of bad medical advice lately. (And I am married to someone in the medical field too, and he readily admits that this is not widely known information in the circles he's in. If the doctor is not interested in genetics--many aren't--doubly so.) 2 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 22, 2017 Author Share Posted January 22, 2017 (edited) One doctor who is not a cardiologist heard a murmur. She hasn't had an echo to confirm yet. Edited January 22, 2017 by Jean in Newcastle Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 22, 2017 Share Posted January 22, 2017 One doctor who is not a cardiologist heard a murmur. She hasn't had an echo to confirm yet. Good luck! 1 Quote Link to comment Share on other sites More sharing options...
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