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Good doctors visit!


danish
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Hi!

I saw a new cardiologist today and he actually knew a lot about dysautonomia! This is a first! (Except, of course, for when I was diagnosed.) He has seen a lot of people with various forms of it, and it was great that he seemed to be good at finding a treatment. He confirmed my original diagnosis, and just had a generally nice demeanor. (FYI for anyone in the Philly area there are very preliminary plans about starting a joint hup and chop ANS center)

Anyway, he did an EKG and said that I have something called a "long Q-T". He said that it often shows up in people with dysautonomia (btw he mentioned that chiari issues also do for all of you who were talking about that). Does anyone else here have it or know anything about it? Does it have any symtoms? He said he would talk to us more after he does more cardiac tests (echocardiogram, stress test, 24 hr holter...etc.). I'm going to look online, but if any of you know anything about it, I'd really appreciate the info.

Thanks,

Sarina

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Long Qt intervals are the spaces from when the heart beats till it hits it's resting wave. If you look at all the blips on an EKG they are all basically in an organized pattern unless you have a lot of arrythmias of course. The tall spiky wave is called the QRS and then there's a little flat area and then a gentle bump. The QRS represents the beat, the q being the start of the interval of course and the T wave being that gentle bump. You can look on the net at a rhythm and see this. The first itty bitty bump is the atrium initiating the beat, the qrs coursing the blood through the ventricles and into the body and then the T wave. The T wave indicates the heart has rested and is ready for another beat. A long QT interval is anything more than .36 milliseconds. A pretty short time frame. This condition is more common in women as is apparently POTS, aren't WE the lucky ones. Mine is right at thirty six so would certainly be considered borderline. This is in no way intended to scare anyone, but long QT intervals can raise the risk of cardiac events. Some that can be dangerous. However, that is not to say everyone with a long QT is going to die a sudden death. For instance, I have Barrett's esophagus, which increases my risk of developing esophageal cancer, but in no way means I'm just going to get it period. People with constant tachycardia, that never slows down are at risk of burning out that node that fires, but it doesn't guarantee it's going to happen. So do not lie in bed waiting to die!!!!!! It sounds like you have a great guy who is totally on top of things and he's really looking out for you, which is more than most of us can say. It's just one of those fluky things that causes higher risk for something else, like a zillion other things. We all have arrythmias all the time of all types and I'd bet that 99% of us have high normal to abnormal QT intervals. I would bet anything it just goes with this territory. But I haven't heard of anyone dying from it. If it's abnormal enough to be of real concern, I would imagine you would get some type of pacemaker, but it may well be not neccessary. I hope that helps shed some light, but do not be afraid okay? If he was really concerned he wouldn't put it off and would address it immediately, so my guess is, it's just a tad off. Like mine and I never think about mine. Good luck with him, he sounds like a keeper. <_< morgan

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Wow, Morgan, it's nice to have someone on the forum who knows so much about the heart and EKGs. You gave such great insight into Sarina's question. I have a question for you as well. My cardiologist noticed on my EKG that I had an inverted T wave? (I think that's what he said anyway). He didn't go into any detail and it didn't seem to warrant any further attention. Just curious what that means. I think it's only shown up on one EKG and I've had several.

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:) well blush gee thanks guys. I was a cardiac nurse for a looong time. An inverted T can mean a lot of things. Sometimes if you've had a burst of tachycardia it will invert or go flat. Mine always goes flat when I have tachycardia. The only time I know of that's it's significant is if you are having severe chest pain, angina, and then it will be elevated or depressed, not level on the line of paper. So i wouldn't worry about it, especially if it's only happened once. I just think there are times we all have little bizarro things that show up on ekg's just there to worry us. EkG's are nice, but really only a really great tool if you're in the midst of a heart attack, or if there's a big change from the last one, but even then it's just a fluky thing a lot of the time. I'm far more into holters, event monitors etc for really accurate readings. thanks again, morgan
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Sarina,

I'm glad you found a good doctor. Sometimes a good bed-side manner is equally important to medical knowledge. I do not know much about EKG's, nor am I an all-around expert like Morgan! I looked up the "long QT" and basically found out what Morgan just told you. It is a big cause of sudden infant death syndrome, but you're not an infant so obviously that's not something you have to worry about. While it can cause some more serious things, don't get yourself worked up about it. Interestingly enough, the medication prescribed to help prevent something serious are the same beta-blockers often prescribed for pots. So, who knows, maybe you'll just be able to kill two birds with one stone. :)

There seem to be about 20 different kinds of long QT's (sound familiar?) ranging from a rare congenital one being the most serious, to borderline readings which are usually benign. I'm sure you found all of this yourself, so sorry if this wasn't helpful at all.

B'Ahavah,

Ayelet

P.S. I don't know if you have any way of translating on your computer, but here are some of the sites I found just in case:

www.infomed.co.il/questions/q_081302_2.htm

www.heart.co.il/_Education/Long_QT.htm

http://www.kol.co.il/pub/showByCat.asp?catID=393

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Amy, prominent p waves in the inferior leads, those that deal with the right side of the heart can be indicative of some mild right atrial enlargement, which can just be caused by the work load if you have a lot of tachycardia or strain on the heart. If it's not showing any other abnormalities and you've had an echo that was normal, don't worry about it. My hubby's EKG showed left atrial enlargement which is a sign of aortic valve dysfunction, but perfectly okay echo. This is why I wonder about ekgs. I think sometimes it's just the way they place all the electrodes. You guys are shaking my brain up tonite! :) Anyway, if you have a slight prolapse or a little regurge, which I believe a large percentage of us have, it would probably show on the EKG that way. okee dokey, morgan

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Guest tearose

Sarina, I am relieved that you found a good doctor. People here have addressed a lot of your questions. Why don't you call and ask all your questions of the doctor too?

I too don't understand hup and chop...? perplexed, tearose

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HUP and CHOP are the two big teaching hospitals at the University of Pennsylvania.

HUP= Hospital of the University of Pennsylvania.

CHOP=Children's Hospital of Philadelphia.

Chop is considered to be the best children's hospital in the US, but from my experience they sure don't seem like it. They are right next to eachother and while for the most part chop is the kids and hup is only over 18, they do share a couple small units (like for this rare congenital heart disease).

~Sarina

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Sorry, I didn't really have time to reply earlier. Thanks for all the information, especially Morgan and Ayelet. Morgan, your explanation was really great and very easy to understand. I am kind of freaked out though--the organization for long qt is called "Sudden Arrhythmia Death Syndrome Foundation". Does that not send red flags to anyone? I guess you're right that if my doctor was very worried he would have said something, but there are all these horror stories out there. :)

Thanks again,

Sarina

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I have seen a couple of things on long q-t before, and it's particularly prevelant in "Marfan Syndrome". From what I understand, an implantable defibrilator is one of the treatments for that?

Morgan, I've had inverted T waves and have had completely inverted sinus rythm on a number of my EKG's. Most were during or just after a IST episode. Go figure. The EP cardios all feel it's within the normal range for me (not normal per se, but normal enough :)).

Nina

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