TOS Flare can mimic Heart Attack

tshadow · 10-19-2007, 10:17 AM

Hi all,

Been in ER twice in this week due to TOS flare that mimiced heart attack.

Starts with high pain, then inability to catch breath, and having labored breath. Feels like I'm trying to breath while constantly blowing up hard balloon.

Next, heart palpitations, and even a pain down the sides of my arm, (in my case, particularly the right arm.)

The upper abdomen, area right below breast gets very hard and very bloated.

The doctors ran CT scans of abdomen, chest, EKGs which showed infarctions, and other tests.

The conclusion is that when the TOS goes into a flare, high pain, that my muscles get hard, and so it is difficult to breathe.

You must treat each one of these as a potential heart attack. Don't guess.

The heart skips beats due to the high pain - the high pain can cause the EKG to have the infarctions. This would be why in rheumy Bluestone's office two years ago it came up with infarctions and he freaked out thinking I was having a heart attack and we went through that whole thing of stress tests, etc., only to find out my heart was perfect. But due to new diabetes II, they were not taking any chances.

The high, hard, abdomen is not due to "constipation" as two ERs have said - (I knew they were ... uh... full of s*&t themselves on that one, as I was not ...) but I didn't want to contradict them. Instead, I followed instructions and came back totally empty of wasted, and still my belly was hard. It was the TOS flared up, making my muscles super-hard, up high.

As soon as they gave me morphine, and also nitro, the muscles smoothed out, immediately, and this totally relieved the situation.

So this is a relatively new symptom, although I believe I've had it before on occasion. I think it comes as a flare after trying to walk or swim extra hard - that is, extra hard for me, since it really isn't extra hard for a NORMAL person.

It was a little hard to get all of the docs up to speed on TOS. Two were right with me on the TOS and how it was working within these symptoms - but others were, how could TOS up at the neck affect your breathing? Or upper abdomen? I then asked those guys, are there ANY nerves involved with breathing - if so, do ANY of them come or go from the outlet? They had to admit yes, and so I said, what if they were being compressed by inflammation currently - what would happen to them, how would it manifest? I literally had to walk them through visualizing what TOS does - how it works. Then they'd "see the light" and say, "oh, I see how this TOS could affect such and such."

Luckily, the first two docs knew the pain levels of TOS, and gave me the IV morphine, as several doctors kept saying, "your pain meds regimen is twice the recommended dose." Then I'd say, "for what? An acute situation? Mine is chronic. What would apply then?" I don't think the doctors like me much. And nurses, even less, because I keep finding them doing mistakes, like trying to give me Metformin right after imaging with contrast, which is a no-no, or, failing to give me my thyroid, etc., daily drugs I must have. I used to like hospitals, but I sure don't now - not now that I'm really sick!

It is very painful, very scary, and just one additional and new concern having TOS. Remember when I went to ERs all last year, and no doctors could figure this out? Well, good ol' TOS was to blame...ha ha ha, that cute little disease...what a sneaky lil' rat it is...

I'm off to Orange County to see my old docs for several days, so I'll be back next week. Y'all take care. Much love.

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