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Forum Name: Diseases of the Aorta
Question: Aortic Root Dilation
|MKD - Thu Jan 08, 2009 11:00 pm|
in June 2007, during a cardiac catheterization, a dilation was found on my ascending aorta. According to the catherization report, the dilation was 4.7cm, and the technician doing the procedure even let me see it on the screen and it was VERY noticeable. A CT scan was performed the following day, and according to that report, the dilation was set at 4.0 cm. A month later, I saw a CT surgeon who was very laid-back about the whole thing, was very adamant that the dilation could not be called an anerysm, and said there was nothing to worry about and he didn't need to see me for another 2 years.
I never had an answer as to why the two reports differed so much in the size of the dilation, nor have I ever had a response to my question "which one of the two investigations could be deemed more reliable, catherization or CT scan?"
I have not been seen about this dilation since July 2007, and I must admit to feeling a bit worried about it. Would I be terribly pathetic if I were to call and ask for a follow-up at this point?
I am currently on Flecainide, 200mg/day for frequent and debilitating PVCs (50,000+/day - constant bigeminy) which is why I was in the hospital in the first place when the dilation was found. No other medications. I also have a fluctuating BP, it can go from 130/80 to 145/105 in minutes. I often deal with pressure in my chest and up into my throat, and a dizzy feeling.
Thank you for your help.
|MKD - Fri Jan 09, 2009 6:07 pm|
I forgot to mention, I'm a 44 year old female, regularly active, slightly overweight, mother of two boys.
All my diagnostic tests have also yielded results as a thickened aortic valve (a couple of cardiologists have said it's bicuspid, another couple have said it's not), moderate regurgitation - the murmur of which is not always picked up with a stethoscope, and usually only by women for some reason (do women have a more acute sense of hearing I wonder?), and a bovine (??) arch.
A holter monitor when I first started having PVCs, also picked up on a Wenkebach block, of 2.8 seconds.
|John Kenyon, CNA - Fri Jan 09, 2009 10:37 pm|
This is a really peculiar situation you've been put in. There is something not normal about your ascending aorta, you have lots of PVCs (not important in themselves, but perhaps a rare window into what may be wrong here this time), and are on a medication which almost certainly was intended to reduce the frequency of PVCs, yet is generally considered to be an unwise choice for this sort of thing.
First: the two studies, CT and angiogram, could reasonably be expected to agree; however, the angiogram is usually the gold standard for cardiovascular studies, so we'll have to give it the nod. The CT does have some limitations by comparison. So your ascending pipe is, let's say, 4.7 cm. In any case the usual "cut point" or size at which most doctors would choose to go in and repair or replace the segment (in patients with Marfan syndrome), is 5.5, which is probably why your CT surgeon was "laid back" about this. However, this isn't always the best way to relax an (understandably) anxious patient. Better to go into some detail about what might or might not be going on and why. Further, in patients without Marfan's syndrome (and we haven't yet determined this about you), a measurement of 4.9 is considered an aneurism (aortic ectasia) and is then followed closely.
There are a number of things which may (or of course may not) be associated with such a dilation of the ascending aorta, and these things are usually discovered and measured by means of MRI rather than angiogram or CT (which is the least senstive of the three for these purposes). For instance, if you've had an echocardiogram (and this should also have showed up on angiogram, but echo is actually better for this purpose) which showed a bicuspid aortic valve, there is a greater lifetime risk of ascending aortic aneurysm. If there is an aneurysm of the sinus of valsalva, which is contained in the ascending aorta near the arch, this can sometimes be missed on both types of imaging you mentioned having had.
In any case two years is, in my experience and opinion, too long a time to go between followups for this problem. Further, any sort of aortic valve insufficiency is prone to cause more PVCs than there would be otherwise. Again, PVCs in general are not the problem or a problem even, but in some people they may lead to discovery of some problem with the aortic valve and/or outflow tract, and these are associated, in certain patients, with an increased risk of aneurysm. So I think your cardiologist and CT surgeon, together, should,first, look at this via MRI, and second should follow this at more like six month to one year intervals rather than two years. The difference between the dilation of your particular ascending aorta and one that has an aneurysm, is 2 cm. If it were to progress at 1 cm per year (as non-dissecting ones are inclined to do), then that would be cutting things rather close. Also there is the issue of your blood pressure, which is a major factor in the management of aneurysms, or even potential aneurysms.
Further, the flecainide issue really troubles me. Here's why: in the 1980s the National Institutes of Health conducted a massive study of people (who, admittedly, had all had previous heart attacks), with PVCs, which back then were still believed to be a potential problem (they are no longer seen as something that should routinely be treated except for the sake of the patient's peace of mind, as they can cause a great deal of discomfort and anxiety); the study, known as the CAST study, had a disastrous outcome which proved that the whole class of drugs (including flecainide) dedicated to supressing PVCs caused more life-threatening arrhythmias than in those who got no medication at all. To shorten this story, in the late 1980s all those drugs had to have a warning added to their literature stating that they were not recommended for routine suppression of PVCs and, further, that PVCs alone did not increase mortality among any subset of patients and that when they needed to be supressed for the patient's peace of mind then a beta blocking drug should be the first line choice. You have a right to this information. What you do with it is up to you. I'd bring it to the attention of the doctor, who of course has every right to prescribe the drug in spite of these warnings, if he believes it will serve the purpose. You, as the patient, do not have to accept this prescription, however, unless all this has been discussed between you and your doctor and you're taking this drug having been informed of the CAST study implications.
That was unpleasant, but you need to know this, and also that a beta blocker could reduce the frequency of PVCs and lower your blood pressure at the same time. This is significant.
In light of the imaging techniques used, the disparity between the results, the fact that a third imagine technique (MRI) and even a fourth (transesophageal echocardiogram) are preferable to either of the others for following this aortic dilation, plus the two-year window for followup suggested, and the presription of flecainide to supress PVCs, you might want to consider a second/third opinion on this matter.
Finally, you would not be in the least bit "pathetic" if you were to question any of the findings and to ask for (or even demand) a followup earlier than planned (soon, actually). We must not live in thrall to our doctors but, rather, be our own advocates and work with them, even when they may feel the patient isn't competent to participate in the process. In my experience cardiology seems to be a specialty where this assumption is more common than many others for some reason. I strongly endorse your taking this bull by the horns.
I hope this has been helpful to you. My best to you, and I hope you'll follow up with us here, and keep us updated as to future developments also.
|MKD - Sat Jan 10, 2009 5:42 pm|
Thank you SO much for your compassionate and informative response. You have no idea how much your response has meant for me. I'm almost in tears because it feels like some of my feelings on this issue have been vindicated. You are absolutely right, there can indeed be a bit of a god-complex going on with some of the doctors in the profession, and I have had the misfortune of meeting quite a few of them. I saw 6 cardiologists before I found my current EP who actually listens and seems very knowledgeable on his subject. He also has some humility and most of all a sense of humor.
First, no, I do not have Marfan syndrome. I (personally) think the dilation was caused by a) uncontrolled hypertension (I have been measuring around 140/95 for years but my PCP has blamed it on "white coat syndrome") and b) the PVCs.
I did know about the CAST study, as I am one of those annoying people who will not take medications until I know as much as possible about them, but felt that I had no choice. I tried 5 different beta blockers (also one calcium channel blocker and one drug similar to flecainide, but not as "bad") and I simply cannot take them. I get severe depression, and my heart rate goes way down to the point where all I can do is sleep (and this is on the lowest possible dose), and I also could not live with the PVCs as they made me lethargic, dizzy and depressed (as well as a bit anxious, although - as I'm very much into research - I did know they were not dangerous). I was offered the option of an ablation or the flecainide, and the counseling I received suggested the flecainide was the less dangerous option. I must say though, I have had misgivings about taking them ever since I got them. My prescription is about to expire in a month, perhaps I should make an appointment with my EP and the CT surgeon and see them both on the same day to see where things are at with this, before I continue taking them.
I have a problem with doing an MRI, I am ludicrously claustrophobic and simply cannot handle that machine, but if they could sedate me, perhaps that would be a good choice. I have had several echos to check the aortic valve - but never a transesophogeal echo - and that's where the conflicting opinions have been. The catheterization said it was bicuspid, CT scans (I've had 3) say it's tricuspid (well, one was inconclusive), one echo said bicuspid, another tricuspid. So, as you can see.. there is confusion. And I've had echos and CT scans at different hospitals, so it's not down to just one interpretation.
Dr. Kenyon, I wish you were my CT surgeon, I feel more comfortable baring my soul to you online than I do with my CT surgeon in real life, but I will take your advice and I shall call to make an appointment first thing on Monday. And if that doesn't get me anywhere, I shall indeed seek out a second opinion.
I will be happy to return with more information once I have them.
Thank you, again, for your kindness and professionalism.
|John Kenyon, CNA - Sat Jan 10, 2009 9:15 pm|
Hello and you are very, very welcome. Oh, and while I'm not an MD (I've just worked with a lot of them, mostly cardiologists, as a diagnostic technician), I'm terribly flattered by that. One of them, a rather "colorful character", once told me "You have to have a personality disorder to go into this specialty." He may have had one himself, but I've also worked with some who have been some of the most remarkably compassionate people I've ever met. It just takes all kinds. There does seem to be something, however, to that one doctor's observation. EP specialists, on the other hand (and this is of course only in my experience) seem, in general, to be more even-tempered. I have no idea why that is. You seem to have met more than your fair share of those "inflated" types. They're not all like that by a long shot.
I'm very pleased to see how thorough you've been in your research: this is, to my mind, the best kind of patient one could have. When someone uses the phrase "informed consent" they know you not only know what it means, but that you're truly informed. It's a huge help.
I'm glad Marfan's has been ruled out. There is still a subset of otherwise "normal" people who have bicupsid aortic valve, and there is some statistical correlation between this and development of ascending aortic aneurism, so those need to be followed just in case. Since the status of your aortic valve is unclear, and since there has been a blood pressure problem over time, I'm sure you're right about the role that's played in the dilation (I won't call it an "aneurysm" at this time, because so far it hasn't qualified, and with any luck it never will).
I almost guessed, in afterthought, that you might have had a discussion about the flecainide, and I now understand how and why you made that decision. Since you've not had an M.I. in the past, you don't really fit the profile of those people in the CAST study, even though it did lead to a total rethinking of PVCs and their treatment. It's too bad about you and beta blockers, but some people do have that reaction (lethargy and depression) and it can be pretty awful. I also can appreciate your wanting to reduce the frequency, as the feeling (among those who feel them -- not everyone does, which is an enduring mystery) is extremely unpleasant.
As for the possibility of MRI, childrean are routinely sedated for this, so I don't see why it would be unreasonable to do the same for an adult. Claustrophobia is a big contraindication for this procedure -- unless you can find one of the "open" types in your area. These are sometimes a lot less confining, but there are those who still don't do well with them.
Ablation for PVCs has been rare until recently, but it's now getting to the point where it could become much more common. Maybe in time this will be workable for you.
The disparity in reports on the status of your aortic valve is remarkble. A TEE might just be a way to clear that up once and for all, but it would seem there's something unusual about the valve just because it causes so much disagreement. Interesting.
It's awfully important to be able to talk to someone in the healthcare profession whom one trusts, in order to feel right about everything, even when everything isn't exactly right. I'm honored that you feel comfortable discussing this matter with me, and want you to know I'm here if you have any questions or anything you'd like to discuss. This has been a big part of my utility as a cardiology tech (and as an ER/critical care tech as well) and I suppose led to my becoming certified in critical incident stress management. People find I'm easy to talk to. I have no idea why.
I'm very gratified to know you'll be making an earlier appointment and seeking an additional opinion as well. This is your body, your health, and no one understands it, on a visceral level, as well as you.
Thank you again for the very kind words. I'll look forward to updates from you. All the best to you.
|MKD - Mon Jan 12, 2009 8:50 pm|
As self-advocates go, I'm pretty darn awful. I called today to make my appointment with my CT surgeon. I have an appt on Jan 30 and they'll do a CT scan first, before I see the doctor. At first they tried to tell me I don't need to be seen until the summer, but I had the cohones to stand up to them on that. But how does one ask for a procedure such as an MRI instead of the CT scan, without sounding hysterical? I just can't do it. I hate to be "that" patient and I just keep keeping on, appearing more stoic and laid-back than I really am.
I'm studying to be a nurse, I can only hope I will be the professional that the patient feel they can turn to without ever feeling hysterical. Because it's no fun.
I will keep you updated.
|John Kenyon, CNA - Tue Jan 13, 2009 12:09 pm|
Hi Monica -
I hope you'll go a little easier on yourself. It's a lot easier to tell someone to be assertive than it is for anyone to actually be that way when the chips are down. The "other side" has an advantage in that they are well-practiced at giving the directions.
The good news here is that the situation has built-in slack. If the CT shows what is needed then it can be left as the document of record. If it's vague or if anyone equivocates, it can be argued that an MRI or even a transesophageal echocardiogram (TEE) should be done in order to clarify. It's not that CT isn't capable of demonstrating what's needed, only that there is more accurate technology if it's needed.
If it should come to that, you might just consider questioning the relative accuracy and asking for the most accurate imaging procedure. However, if things all come out looking as one might expect (at least as large a dilation as visualized by angiogram), then we should give the doctors their due and go with that. These things don't tend to get smaller, so if it comes out looking normal there would be a very good case for insisting on a "tiebreaker" be means of MRI or TEE. Meanwhile, you've done very well in handling yourself with this. It's not that easy. Just don't think of yourself in absolute terms as either "too easy" or "too pushy." Just be you. You'll do fine. I think you'll make a very fine nurse, too, and I admire your choice of professions!
We'll be looking forward to your update.
|MKD - Thu Jan 29, 2009 10:36 am|
So, I have news. On Tuesday this week, starting overnight, I began to have chest, shoulder and left arm pain. I took my BP over the day to check that it wasn't going too high, and it kept climbing. So, in the evening, as my BP reading was 156/104 and the pain was so bad that I could not breathe properly, we called the rescue squad out. They took me to the ER, I was put on morphine (which I absolutely hate, by the way) and my BP kept rising. They pumped more morphine in, my BP rose even further, until at one point it read 192/129. So, I told them to stop giving me morphine and to do something to get the BP down as I did not want to have a stroke. They responded by giving me Toradol and Ativan. The Ativan calmed my heart rate down (go figure) and the BP started coming down a bit as the morphine wore itself out.
I was then admitted to the hospital (they could not get my BP below 160/110) and in the morning I had an echo and a CT scan. The good news here is that the Aortic dilation is still at 4.0cm according to the CT scan (although, funnily enough the doctor who was treating me, a diagnostician of sorts, also agreed that the catheterization is a better diagnostic tool, and he would lean towards the 4.7cm value it had given as more accurate, but the radiologist who read the CT scan this time said "those guys often aren't as good at measuring these things".) So, as my BP came down over the day, I was finally released (still with lingering, mild chest pains, mind you) in the afternoon, with a prescription for Indomethacin for an "inflamed nodule in the lung that had been found on the CT scan and which was probably the reason for my pain" and lisinopril for the BP.
I don't know what to think, or quite how to react to this. I don't like what I read about Indomethacin, and since my BP isn't always high, I'm not sure whether to take the ace inhibitor (yesterday at 6 in the morning on the ward, my BP was 96/54.. if I take an ace inhibitor, will it go even lower in the morning??).
Oh, and since I have that reading of 4.0 again, I canceled my appointment tomorrow with my CT Surgeon.
So, I'm coming to you, again, to ask you kindly for your opinion and insight, Dr. Kenyon.
Thank you so much in advance.
|John Kenyon, CNA - Thu Jan 29, 2009 12:24 pm|
Hi Monica -
Wow, I was getting tense just reading the beginning of your post! Thank goodness the dilation doesn't seem to have been affected by this episode. It was really very strange, at least on the surface. If the inflamed lung nodule was the cause of the pain and the pain began while you were sleeping, then this probably set off one of those awful coincidences where you wake up already knowing there's a potential problem, and with chest pain. This is going to send many people's BP straight up, of course (although some aren't as reactive as others), and this puts stress on the entire vascular system, but of course especially the first part of the aorta, which is scary to consider. However, it seems to have remained very elastic throughout all this, and is staying stable. That's the best news out of the whole incident. Who would expect something like that to happen out of the blue, though?
The morphine reaction (increased BP) isn't all that unusual, really, although I'm not sure why some people react to it more than others.
Indomethecin is awfully strong medicine for the sort of pain it seems you were having. It can have some pretty noxious side effects, too. If you've looked it up you already know about these. I would think a garden-variety NSAID would be as good, with less side effects, and if morphine wasn't effective before, should this happen again, other anti-inflammatories probably should be considered, maybe even low-dose, short-term steroids.
The disagreement over CT/MRI vs. angiogram is understandable. Each has its pros and cons. While the CT may be more accurate (and who knows for certain?) the more conservative approach would be to go with the higher number, even though you've now had consecutive CTs that yielded the same 4.0 size, which seems persuasive for general purposes.
Since you're apparently a hot reactor in terms of blood pressure (pain is often very
powerful influence on blood pressure), it's probably safer to take the lisinopril than not. While your BP has dropped to low normal recently, it clearly has a great range, and you want to keep it in the normal numbers as much as possible. Lisinopril does have some potential for dropping the BP lower, but some other BP meds are worse about that. If it causes too many side effects you could reduce the dose or discuss discontinuing it, but I think most people with any aortic dilation are probably better off taking something to keep the BP on the lower side.
I hope you're feeling much better now, and please keep us updated. Hopefully that nodule will go away or at least keep "quiet" now.
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