Hi
I just come back to this post to see how Kez is doing and saw your comment. I would imagine your niece's cardiologist refered her to an electrophysiologist at a larger hospital in the area you live. How did your niece have this discovered? It is very difficult to diagnose. I hope she sees a good doctor
Hello
My nice is 12 years old and she as a problem named Arrhythmogenic right ventricular dysplasia.
I would like to know who is the best doctor in this case and is there the possebility to help her, if yes what are the new methods.
If she get this attacks she has an puls of 190 or 180 but she do not reall feel them, she just have an impression that somethink is moving inside her. But she is normal in her behaviour.
The other case is apart from this attacks she has not normal regular heart beats
I really hope that you ca help me in this matter, as we feel somehow lost
Kind Regards
Haida
Congrats!!! That had to be the best news!!!! Makes me wonder sometimes about all the tests and precautions but I guess that is what they are for. Take care and stay healthy!!!
Just got my MRI results and the Dr. told me I'm completely normal. The enlargement on the echo was due to echocardiographer error. Best of luck to you run2000. I hope you receive the same news I do.
Kez, Good Luck to you also with your results tomorrow. You may be surprised and have good news. Like the doc's response to your questions, the MRI is considered the gold standard for RV size and thinning.Take care.
run2000,
The only test I've had done so far in addition to the ones listed above are an MRI on Feb. 2nd, and will be getting the results from that tomorrow (2/12). It's been a LONG week +. The only reason they are testing me for this is because of the enlarged right ventricle on my echo & PVC's, which I don't have alot of. It's hard to accept something is potentially wrong, especially ARVD. I will post back tomorrow with the results of the MRI and if any additional testing needs to be done. Best of luck to you and take care. I know how much this sucks!
First time on this site, I also am being evaluated for ARVD as I have 3 minor criterea. I am a runner and piked up missed beats while checking my pulse rate during training. Have you had a heart biopsy and any results? I am waiting for an ep study to be scheduled and am currently on 50mg of Toprol. I feel fine but not sure what is going on and why. good luck and I guess I can just come back and look for more comments.Take care.
Hello Kez,
I am sorry to hear that you are going through this. Sometimes not knowing and waiting for test results is the hardest part. MRIs are considered the gold standard for RV size and thinning to suggest ARVD. Echo's can give important information, but it is not as reliable as MRIs. The diagnosis of ARVD is sometimes quite difficult to make and may take some time to be sure.
I would recommend that if you do have ARVD, that you see an experienced center for advice on the treatment. Hugh Calkins at The Johns Hopkins Hospital has an ARVD registry and is one of the leaders in the field - if you live anywhere near Hopkins, I am sure they can be helpful.
I hope this helps. Thanks for posting.
A little further detail:
M-MODE AND 2-D COLOR-FLOW INTERPRETATION: Chamber sizes are within normal limits. Left ventricle demonstrates uniform wall motion and function. Visually estimated ejection fraction is 65%. No pericardial effusion is seen. No intracavitary mass or thrombus is appreciated.
The aortic valve is trileaflet and opens well. Mitral and tricuspid and pulmonic valves are structurally normal. Good valve excursion and openings are noted.
STRESS ECHO Summary:
1. No evidence for ischemia
2. Normal heart rate and blood pressure response to exercise.
3. Excellent exercise tolerance.
HOLTER SUMMARY: Abnormal Holter study. Underlying rhythm is sinus with average HR @ 75 BPM varying from 46-146 BPM. No pause events were observed. Rare PVC is noted. Other descriptions of chest tightness as well as fluttering sensation is associated w/isolated PVCs.