Deep chest pain, right arm & sometimes right leg 7 years post op mechanical AVR - 29 yr old male

[Kalivia]

Hi all,

I have congenital aortic valve stenosis, operated on at birth and had carried out Balloon valvuloplasty. Followed by mechanical AVR replacement surgery at age 22.

From day 1 of the AVR replacement surgery I felt an awful burning deep pain in my chest. Blamed it on having my chest open just several hours prior... 1 month later, I get another pain in my chest whilst walking. 7 years later, I'm still getting these horrible deep pains deep in my chest. On some occasions it might start in my right arm or even my right leg without chest pain.

So many investigations, but still no diagnosis. Currently on Diltiazem 90mg morning 90mg night, I convinced myself its coronary artery spasm, however my coronary arteries were never the problem.

Has anyone experienced this? Would love to get this diagnosed... The pain can vary from a 2/10 to a 10/10.

[PadThaiNoodles]

I assume you’re on warfarin? What’s your INR?

[Kalivia in reply to PadThaiNoodles]

Yeah that's right, I self test at home. Range between 2-3 & mostly on target at 2.5

[PadThaiNoodles in reply to Kalivia]

Well that’s bang on.

What’s your cardiologist say? Is there a line of investigation that he’s pursuing?

[Kalivia in reply to PadThaiNoodles]

There's a big line, although to be honest I feel I have exhausted all of their options. Have had 2nd opinions too.

This pain only happens at rest, this is why I'm convinced its coronary artery spasms.

Any help is appreciated 🙂

[PadThaiNoodles in reply to Kalivia]

I got something vaguely similar for about a week after my surgery — felt a bit like a muscle cramp in my back but sometimes radiated to an arm or a leg. I have a prolapsed disc in my back, so I thought it was that at first — though my back doesn’t usually give me pain that bad, or pain that goes away again within three or four minutes.

My INR at the time was quite high (slowly coming down from 4.1 as the initial “charge” dose had been too high for me), so I wasn’t really worried about blood clots. Recovering from OHS was a bit like being hit by a bus anyway, so I never even mentioned the pains to the hospital staff. 🤷

[Kalivia in reply to PadThaiNoodles]

It's reassuring to hear someone else experiences similar pains. Prior to getting the pain, do you experience a slight pins & needles sensation or like your hairs raise behind your neck? This pain has been coming on each month for the last 7 years since my mechanical AVR.

[PadThaiNoodles in reply to Kalivia]

No, I don’t recall having any other symptoms before the pain episodes. Any chance it’s something neuropathic from the sternotomy rather than cardiac?

[Bunkular]

Although every problem affects people in different ways with differing symptoms; if it's coronary artery spasms, they're usually accompanied by light headedness, dizzy spells and possibly nausea as well. If your spasms are mild then try active movement like walking around the house to "kick" the spasms away. My two pronounced events occurred while I was in bed in the the early morning hours, never when I was moving about. Hint: I think anxiety plays a factor.

[Kalivia in reply to Bunkular]

Thanks for this, very reassuring to hear. I often get these pains when I'm at rest. Sometimes when I'm asleep, more when just sitting on the sofa, I'm quite active as I work at an airport, walking approx 10k steps a few times a week.

Do you take diltiazem?

When you have these dizzy spells, are they during the spasms?

[Bunkular]

I have had 2 very pronounced 'spells' - the 2nd one more severe than the first. I had horrible dizziness such that I had to lie down quickly onto the floor so I wouldn't faint. There was extreme pain in all 4 limbs as if a tournequet was applied to each one but no pain in the chest. Severe body sweating on all limbs & loss of ability to move my legs. By the time the ambulance arrived I was able to get back up but my legs and arms felt like they lifted a ton weight which lasted more than a month. Since the heart specialist put me on perindoplril, metoprolol, low dose aspirin & increased my statin I've not had another spell in over a year. The meds have also had the welcoming benefit of decreasing my palpitations which used to be quite severe - enough to wake me up at night. No I don't take diltiazem. I always do stretching exercises if I feel any sign of pins & needles or palpitations.