New Symptoms, More Useless ER visits

[deogloria11]

Hi,

Sorry I haven't been around in a while. Been moving and stuff.

I've been having some symptoms that are really worrying me. First, background:

Had surgery 19 months ago, because I had BAVD, with a bicuspid aortic valve and 5 cm ascending aortic aneurysm. Had valve replaced with a bovine valve and an aortic graft. Surgery went awesome, recovery too. (As awesome as heart surgery recovery goes, LOL.) NOT taking any blood thinners, though I'm supposed to take a baby aspirin a day, but I haven't been. (I know, I know.:rolleyes2. Was taking Nattokinase for a while instead of the baby aspirin, stopped that six months ago.

Started having dizzy spells a year ago August (5 months or so post-op), which had increased up until March, at which time it was daily, to the point of making me sick sometimes. After getting a Reiki (energy healing) treatment, they went away for a while, and now I've learned Reiki myself so I use that whenever I get a dizzy spell, and it almost always makes it go away in seconds. Doctors did an MRI on my head and neck, and said there's no sign of brain aneurysm. (Although I met a woman online who said she was told the same thing, then later had her non-existent aneurysm rupture.)

The "healing pains" from the surgery (as I called them) had gone away last fall, about 7 months post op. Then the same (or similar) pains had started up again last February. I don't have health insurance, and I'm now in a different state than where I had my surgery, so I didn't go in to the doctors until a couple of months ago, when they became more frequent and worrisome. Doctors did a CT with contrast, didn't find anything. Said I needed an echo. But since doctors won't see you without insurance or cash....you get the idea.

So the past week or so, I started feeling a lot of discomfort in my chest when I curled up on my side to go to sleep. The feeling would extend up into my neck on the left side. This would be no matter which side I laid on. Then two days ago I woke up in the middle of the night, and realized that I was feeling the same pain in my chest and into my neck, even when I laid flat or sat up. Every time I exerted myself in the least, I felt it. I've also noticed that it seems like I'm getting some slight shortness of breath lately. Then yesterday I coughed a few times...the same type of cough that I would call my "I have a crappy heart valve" kind of cough.

So I went to the ER, and they did blood tests, a chest xray, an echo. (It was daytime this time, so they could do an echo...last time they didn't have a tech on duty, and I wasn't dying, so they wouldn't call anyone in.) Everything came up totally normal. They were going to give me the boot, and I broke down in tears. Then a blood test came back abnormal (they were going to boot me before getting all the test results, nice). They said it was indicative of some inflammation in my body, or possibly a blood clot. So they did a CT with contrast. No clot in my lungs. So then I got the boot, with a prescription for ibuprofen. Yeah, because covering up my symptoms was exactly what I was looking for.

Now the feeling in my chest isn't as noticeable, it's mostly pain in my neck. I'm even starting to feel like there's a lump in there when I swallow. It's not in my throat, it's off to the side in my neck. Sometimes when I bend over, I feel pressure and pain in my neck, and a funny feeling in my head. I don't know if this has anything to do with my heart or not, now. All the heart test showed normal. I don't think it would be a carotid aneurysm, because they just did that MRI of my head and neck, and I asked the ER doc to recheck that old MRI to see if it showed the area where a carotid aneurysm could be, and he said it showed nothing. I'm probably going to order copies of the tests, because my first aneurysm was noted on 3 echos and a CT, and was "overlooked". But I'm pretty much stumped right now.

Has anyone had anything like this happen? I don't know what to do now. The ER doc clearly just wanted me out of his ER since I didn't appear to be dying. This is so frustrating, because we don't have insurance, but we make too much money to get public assistance. If I could figure out what it probably is, we might be able to scrape enough together to go to a general practitioner and get one test done.

Sorry to sound so long-winded and whiney. I'm just looking for ideas, hoping maybe someone else has been through this. I'm really glad my valve is okay, because I was freaking out on the way to the ER, thinking I might have to get another valve surgery. But the way I feel, I'm afraid to exert myself at all. And I have six young children, so not exerting myself...:rolleyes2:.

Anyway, thanks for letting me vent. :redface2:

 

[Lynlw]

Sorry you are having so many problems. It's good that you were able to get alot of testing done and things look good Does your state have a high risk pool for insurance? I can't help you with any of your problems, but have you ever had reflux? When I have it bad, it feels like alot of the things you are describing.
IF it is inflamation, which I know can be pretty painful, did you try the ibuprofen? It might be worth taking it just to see if it helps or not, that way you could rule out some things.

 

[kfay]

Since you had a blood test come back positive for inflamation, you could have Dressler's syndrome which can be extremely painful, can occur anytime after you've had heart surgery, and can become a chronic condition. Ibuprofen is a good "easy fix", but if it doesn't work, they will put you on steroids. So, I don't think he was trying to hide your problems, it may actually fix it. We have members on here who have been on long term, low dose steroid treatment for it for a long time.

I had Dressler's after my first surgery many, many years ago and don't really remember much about it other than they put me on steroids and I've never really had any problem with it since then. Earlier this year when I was experiencing chest pain (which turned out to be gallbladder problems), they thought it might be Dressler's again. Thankfully it wasn't.

Too bad you can't establish a relationship with a local cardio. I realize you belive in holistic medicine, but heart valve issues need a little more conventional care than that sometimes.

Kim

 

[deogloria11]

Lyn,
I've only had reflux once or twice while pregnant. It's not that kind of pain. The pain is kind of dull most of the time. (I'm really bad at describing pain.) And the pain in my neck is off to the side and away from my esophagus. I haven't tried the ibuprofen yet. I hate taking drugs of any kind if I don't have to. I'm thinking the inflammation the doc mentioned could be from my foot or hip, both of which I did something to a couple of weeks ago, and has been slow to heal. Though it very well could be that I'm experiencing inflammation in my chest too, but I don't know what it could be from. But you're right, I should consider trying it. I might try some chamomile tea today first, as that is really good for inflammation. If that doesn't seem to help, I'll break down and try the Ibuprofen. I'm just always really careful about taking anything that can cover up symptoms, especially when I don't know the cause yet. Since all the tests were fine, it could be that it's something mundane causing the problem. You know how it is...anything goes wrong in the chest area, and you start freaking out. My poor husband...I was crying yesterday before I went to the ER, because I felt like I was never going to see my kids again. Which is kind of funny, since I was utterly convinced when I had heart surgery that I would be just fine. LOL.

Thanks!

 

[deogloria11]

Kim,

I'd go to a cardio if I could. Although at this point, I'm pretty sure they'd take a look at the tests and write me off too. But I'd still go if I could. I haven't heard of Dressler's, I'll definitely look that up. Thanks!

 

[deogloria11]

Kim, I just checked out Dressler's on Mayo. It sounds a little like it could be that, but I haven't had any fevers. Do you think Dressler's would have shown up on a CT with contrast or an echo or chest xray?

 

[tcopel]

Sorry your going through this. I'm just throwing out some things to consider. Given that it seems that your discomfort is positionally related, I wonder about a type of radiculopathy or nerve impingement in the cervical or neck region. I think it would be rare for this type of problem to manifest itself with discomfort radiating to the chest region but if a cervical impingement would inflame the muscles that originate in the neck to the chest, then perhaps it could happen. Also, the feeling of a lump in your throat makes me wonder about a large thyroid nodule that could impede on your esophagus. I dont know if this could have seen on your recent CT scan if they were not targeting this potential problem. Then..due to this apparent elevated inflammation marker, I began to wonder about inflammatory processes such as polymyalgia rheumatica, or other similiar multiple generalized inflammatory processes that can manifest themselfs in a variety of musculoskeletal ways. I also wonder if simple pleuritis or inflammation along the thoracic rib cage could do this. I really dont know but I just thought I would throw a few random things out there for your consideration. None of those things I mentioned above are life threatning and can be treated without too much problem. Lastly, I would consider seeing a good internal medicine doctor rather than a general practioner as they have more time to sit down with you for complicated problems. Hope all goes well.

 

[ALCapshaw2]

You didn't give your age so this may be a WAG but...

I'm wondering if the pain in the side of your neck could be from atherosclerosis of the Carotid Artery on that side of your neck. The usual test is to start with an Echo of the Carotid Arteries.

 

[Lynlw]

You didn't give your age so this may be a WAG but...

I'm wondering if the pain in the side of your neck could be from atherosclerosis of the Carotid Artery on that side of your neck. The usual test is to start with an Echo of the Carotid Arteries.

From her sig she is around 38

 

[deogloria11]

Tcopel, Those are all some good ideas. I wondered about the thyroid myself, and also about the possibility of going to a chiropractor to see if it was a subluxation that was pinching a nerve or something. Would an internal medicine doctor be the kind who would require a referral to get in to see him?

Al, as Lyn mentioned, I am 38. I don't think it would be atherosclerosis, because the docs said when I got my surgery that I didn't have that, and it's only been 19 months. But thank you for the suggestion.

I'm still going to look into all these other ideas, but I'm wondering if Kim was right, and it's Dressler's. I drank some chamomile tea twice yesterday, and the pain has lessened in intensity and frequency. My sore hip muscles are also feeling better (boy, why didn't I think of this weeks ago, lol). The only thing is that I haven't really been running a fever--it's pretty rare for me to get a fever. So I don't know if you can have Dressler's without the fever. If you can, maybe I had a mild case of it?

Another thought I had was that the one thing I've been doing lately is going to a bar twice a week for karaoke nights. While I'm there, I usually sing around five songs, and do a line dance twice. Oh, and drink a little. ;-) It's also pretty smokey there. But I'm wondering if maybe the dancing could have irritated some old scars inside, or something? Because the dancing is what made my hip and heel so sore for the last few weeks. I'm really heavy, so one dance really does me in. But I don't know that dancing would irritate anything up in my neck, though, and that seems to be the worst part right now.

Anyway, thanks everyone for pitching in and trying to help me out. It's so easy to get freaked out every time something hurts. The heart surgery thing is bad enough, but when you add in the BAVD and the knowledge that I'm genetically prone to aneurysms...every headache, dizzy spell, and chest pain turns on the worrisome mind chatter: blood clot? aneurysm? Pericarditis? Endocarditis? AAAAHHHHH..... You get the idea. ;-)