your opinions on this pain please...

[lynnconnolly]

Hi all, I've been to see my cardiologist today and he asked how I'd been. I told him about the things that have happened in the two weeks since I saw him last, and he sort of shook his head, shrugged and said he didn't think these things were related to my mitral and aortic regurg or my pulmonary hypertension, which he says is now 'nearly' resolved and is secondary to my mvr. Anyway, I don't think I agree that these things are not heart related and I'd like you guys to give me your opinion what this could be. I really like my cardiologist but he does tend to be very dismissive.

Anyway, two weeks ago, I had an echo and as things had improved since the last one, he decided to see how I'd be off furosemide. Today he didn't do an echo but did a physical exam. My blood pressure was quite high (although he didn't tell me the figures) so he's doubled my dose of Ramipril. It's very unusual for me as I usually have low bp. Anyway, in these two weeks, I've developed a pain/pressure/weighty feeling in my back and chest that's more or less constant at the moment. I've also had some episodes of sharp upper gastric pain that tends to last only seconds but comes every few minutes with nausea - like you would get if you had eaten something nasty, but without the lower abdomen cramping. This doesn't happen often but is nasty when it does.

I also sometimes have trouble swallowing, as if there's something stuck in my throat. I have a hiatus hernia and it feels like that did before I was diagnosed. Like a 'fullness' rising up into my throat type feeling... sorry this is all rather vague. The pain I get is mostly central chest and back, but it sometimes is in my ribs on the left side at the front and often feels like my left lung is a brick in my back. Just about an hour ago, I got a pain that happened with every heart beat, which I think actually was in my heart. It was under my ribs on the left side.

If you can imagine a square block sitting right between your chest and upper back, that's kind of how it feels. Soooooooooooo, any clues what this might be?

Also, appropos of the furosemide, he said I didn't need to go back on it because I'm not 'congesting'. This he concludes is because I don't have ankle swelling, but even when I was first diagnosed and had horrendous amounts of fluid around my heart and lungs, I didn't ever have ankle swelling. What I did have was like a spare tyre all around my ribcage. This went once the fluid did, but it's back now. I didn't bother mentioning this because to be honest, he just dismisses what I say so I figure if it is fluid, eventually it'll get bad enough for me to need to go to the gp or a&e.

I've attached an image of where I get these pains.

Thanks everyone - any ideas about what it might be would be gratefully received. If I have a list of 'this could be it' things, I can go present him with, he may do something about it.

Lynn

 

[Mary]

Lynn,
It sounds fluid related to me, but unless you are weighing yourself every day, there is no good way of gauging if that's what it is, and if so, how much you might be retaining.

Is it possible that it is the hiatal hernia acting up?

 

[lynnconnolly]

Hi Oak, many thanks for that. I'll do some research to show him and then present him with that possibility. Thanks again

Lynn

 

[lynnconnolly]

Hi Mary, I have put on weight but he didn't take any notice when I mentioned it. I'll add it to the list of things to show him though. It could be my hernia but I don't know why it would start playing up now after years. I take zoton for it. I can't rule that out though.

Thanks for your reply

Lynn

 

[KristyW]

Hi all, I've been to see my cardiologist today and he asked how I'd been. I told him about the things that have happened in the two weeks since I saw him last, and he sort of shook his head...I really like my cardiologist but he does tend to be very dismissive.

Also, appropos of the furosemide, he said I didn't need to go back on it because I'm not 'congesting'. This he concludes is because I don't have ankle swelling, but even when I was first diagnosed and had horrendous amounts of fluid around my heart and lungs, I didn't ever have ankle swelling. What I did have was like a spare tyre all around my ribcage. This went once the fluid did, but it's back now. I didn't bother mentioning this because to be honest, he just dismisses what I say so I figure if it is fluid, eventually it'll get bad enough for me to need to go to the gp or a&e.

Lynn

Lynn,

I understand that you like your cardio, BUT when you list things like chest pain and shortness of breath, AND he is dismissive...that's not a Dr that has your best interests at heart. Especially when you keep symptoms and previous experiences from him because he is dismissive. I'm thinking that it's time to get a second opinion. Maybe he's correct, but you still need assurance that things are ok. Not an "It's not an issue ...(It's all in your head)"

Some cardios still have the mindset that women don't have heart problems...I'm hoping that your cardio doesn't fall into that category.

Just my humble opinion.

 

[lynnconnolly]

Here's a quick link to some info about aortic aneurysms and how to evaluate the aorta.
http://www.bicuspidfoundation.com/Aortic_Aneurysm_and_Dissection.html

That was a very informative link and it does sound like this is a possibility. I did have a TEE and I have requested my records but it's a very long process. I've no idea when I might get that report.

Now... how do I put it to my gp (it's him I'd go to and ask him to refer me for whatever tests I might need) that I fear this may be what it is without sounding like a total hypochondriac, because I suspect that's what my cardiologist would think if I went straight to him. He may just take no notice

 

[lynnconnolly]

Forgive me, maybe you have answered what I am about to ask in another post, but I am just getting up to speed on your situation. Have you had consultation with a surgeon yet? I also am not very familiar with how things work in the UK, as far as seeing the doctors you want to see and having the tests ordered that you think you need.

Hi, no probs at all, I'm very glad of your help. I haven't seen a surgeon because for the time being, my cardiologist reckons I don't need surgery in a hurry and it would be my cardiologist who would make that referral.

As to tests etc., the doctors are under no obligation to provide any test they consider isn't needed. That said, my gp is a lot more open to really listening to what I tell him, but I think what he'd do is call my cardiologist and he'd probably say he doesn't think it's likely.

Thing is, each time I have an echo or any other thing done, something's changed, but I bet if I go and say to him that I suspect any of these aorta related things, he'll say he didn't see such-and-such a thing on the last echo so it's not likely.

I could have tests done on request if I pay for them, but that would run into hundreds if not thousands of pounds and I can't afford to do that.

Thanks again for your help and do feel free to ask anything.

Lynn

 

[lynnconnolly]

Lynn,

I understand that you like your cardio, BUT when you list things like chest pain and shortness of breath, AND he is dismissive...that's not a Dr that has your best interests at heart. Especially when you keep symptoms and previous experiences from him because he is dismissive. I'm thinking that it's time to get a second opinion. Maybe he's correct, but you still need assurance that things are ok. Not an "It's not an issue ...(It's all in your head)"

Some cardios still have the mindset that women don't have heart problems...I'm hoping that your cardio doesn't fall into that category.

Just my humble opinion.

Hi Kirsty, you're right of course. I just don't know how I'd face him if I ask for a second opinion. I know it sounds stupid but I'd feel it was tantamount to saying 'I don't trust you and I think you're wrong'. The world and his wife at the hospital fairly worship this man. Every person I've seen there who's given an opinion rate him as a genius, so it's very awkward. I know I should get another opinion but it is tricky. Especially as this cardiologist has a 'special' interest in me because of the fact that Cabergoline (Dostinex) caused my problem so he's even talked to me via email about it. I don't feel that I can ask him things about my general condition via email though - we only discuss the drug thing - but giving their email address to a patient isn't something most doctors do here.

It's tricky

 

[lynnconnolly]

If you really want me to, I think I can find some links to even more alarming articles that discuss difficulty swallowing and feeling of pressure in the chest as symptoms of a thoracic aortic aneurysm.

That would be great Oak thank you. If I can sufficiently alarm my gp, he may do an urgent referral. My gp is great - he always takes what I say seriously because I've been proved right, as in, when I kept going there and saying to various doctors that there was something wrong. They couldn't find anything and sort of implied I was stressed, then I ended up in a&e in a resus room being proved right.

He's agreed to be the doctor I see all the time and to whom all reports etc., go. I'm so glad I've found him. I just wish I'd found him ages ago!

 

[tobagotwo]

Lynn,

There may be other aspects that speak to heart-related themes, but the nature of the pain, the general areas you're describing the pain originating in, the semi-nausea...it really sounds a lot like gall bladder issues instead.

They can check for that with a painless, nonintrusive sonogram.

Pain can also cause stess reactions that would affect SOB and other symptoms.

As far as the doubling of your Ramapril, I suggest you start keeping a log of your BP, as many as five times a day, if you can be available to do it. Morning, mid-morning, noon, midafternoon, evening. Keep it for several weeks. I think it's categorically wrong to double a dosage of any BP medication based on one transitory reading in the doctor's office. If necessary, ask for an overnight portable blood pressure recorder, to see what your blood pressure really is. Medication should reflect the long run or the average, not the moment of stress in the exam room.

Best wishes,

 

[EireCara]

Hi Lynn, so sorry to see that things are not so good for you right now. I was wondering do you have any 'pulsating' in your abdominal area?

I have a very sore pulsating area just above my navel and I also have swallowing problems plus my voice becomes hoarse almost daily.

I totally understand your frustration with the gp/cardio thing. We have the same problem here in Ireland. It takes months to get to see anybody. I guess if you change to a different cardio you will have to wait for 2 or 3 months to see him/her. But if you get 'into the system'' you can access tests etc quickly, so mabey a visit to the A&E is the way to go ???? I know the thought of going is horrible...just a thought !!

 

[lynnconnolly]

Oak, I could certainly ring my gp in advance of an appointment and get him to see if he can get any records. When I last saw him which was maybe two weeks ago, he only had the discharge letter from them. I had a TEE and an angiogram and two echos since then, which he knew nothing about!

Literally though, every time I have a test, there's a new outcome, and this is all since March 14th! My first echos, xrays etc., showed I had severe MVR that had to be replaced asap. Next test, I had both MVR and AVR and he thought the MVR could possibly be repaired but the aortic valve would have to be replaced, asap. Next test, both had improved enough to not require urgent surgery...

This, the cardiologist says, is because it was this drug that caused it and he's never dealt with anyone else who's had this happen, so each thing is new ground to him... and me!

 

[lynnconnolly]

Okay. Will tonight be okay for me to look for those other links? It is mid-afternoon here now, so I am talking about, maybe six or eight hours from now.

That's great Oak thank you - but please don't put yourself to a lot of trouble. I'm very grateful to you for all your help though

 

[lynnconnolly]

Lynn,

There may be other aspects that speak to heart-related themes, but the nature of the pain, the general areas you're describing the pain originating in, the semi-nausea...it really sounds a lot like gall bladder issues instead.

As far as the doubling of your Ramapril...

Hi Bob, it could well be, I've no clue. As to the ramipril issue, I don't know what to tell you. He did make the decision there and then, but as to the efficacy of it, I guess I can only take his word for it that it's the right thing to do.

Many thanks for your post and I'll certainly keep your suggestion on 'the list'

 

[lynnconnolly]

I have a very sore pulsating area just above my navel and I also have swallowing problems plus my voice becomes hoarse almost daily.

OMG Jacqui, go to A&E! It sounds to me like you definitely have serious problems so you really should go! It does suck going to a&e as you say, but while mine's quietly getting worse, yours sounds uber urgent to me!

 

[lynnconnolly]

Oak, I'll be 42 in July

 

[lynnconnolly]

Thanks Oak, that's great. Really, thank you so much for your time

 

[Susan BAV]

Hi Lynn - I don't have time to read your replies right now, will read them later, but is it possible you have swallowed a pill that hasn't gone down? Recently I swallowed a big pill (decongestant) with not enough water--didn't realize it at the time--and it took a couple of painful and uncomfortable days to get all the way down...