Does this follow-up plan with no CT/MRI make sense?

[doyo]

First of all, I want to express my sincere thanks to all members of this board.
My wife had an emergency OHS 7 weeks ago. The surgery, as sudden and overwhleming as it was, was the easy part.
Since the surgery, some medical professionals put her in the tight spot many times (esp. with warfarin management) and I was able to get her out of there all because of the infomration on this board . We thank you all for your generous hearts in sharing your experience and wisdom.

I took her to the first follow-up with the cardio and had some question about this doctor's follow-up plan that did not include MRI/CT.

Here are some background info.
My wife (age 37) had some discomfort in uppper chest, under the collarbone area for about a year.
It was never really painful, but bothershome (more like a muscle ache or discomfort) and did not go away.
She went to see this cardiologist 7 weeks ago and did the echo.
The cardio discovered a dissecting aneurysm and put her immediately into the ER at the heart center.
He said it was the first time he ever actually saw the dissection on the echo.
The surgeon showed me the CT image the next morning and I could see why the dissection was visible on the echo.
She had 5.5cm - 6cm aortic root aneurysm and the dissection everywhere (ascending aorta, arch, branch arteris: carotid and subclavians, and 1/3 of descending aorta).
In many sections, one side of inner wall was separated creating hanging flaps.

The surgeon did an MRI for additional assessment and performed 8 hour OHS the next morning.
She received 23 mm St. Jude mechanical valve and all affected aorta replaced with Dacron graft.

She had no prior cardiac condition and doctors could not say when it began except probably in the past 1 year coinciding with her symptom.
They said it was a miracle that it had not ruptured and the cardio discovered it before the rupture. All her life, she had an ultra low blood pressue (90/60) and that probably helped too.
They do not know what caused it and Marfan is the most plausable suspect at this point. They said they will test her for Marfan.
So we know that she has some form of aortic disease / connective tissue disorder of unkonwn cause. Surgeon did one more CT before she got discharged to make sure everything looked OK.

Last week, we went to first follow-up with the cardio who discovered her condition.
I asked him about the long-term follow-up plan and his answer was the echo once a year.
I asked about CT/MRI and he said they were not necessary.
This did not sound right.
So I asked about the annual echo: would echo include her remaining aorta ( thoracic-abdominal, and abdominal) and metioned that I read usually abdominal aneurysm is more common than thoracic aneurysm and she needs careful monitoring of remaining aorta.
He said just the echo on thoracic area is enough because other area was clean. Just thoriactic echo, no MRI/CT.


I came to the VR.com and found that annual echo is common so we could live with that.
But no MRI/CT and just the thoracic echo worries me.
It seems for members with aortic disease, their doctors also do the CT to monitor the trend over time.

Creed3, who is the same age as my wife with similar dissecting aneurysm repair mentioned having a CT in 2005.
And RobThatsMe's follow-up plan included the baseline CT and on-going CT to see if things stay stable.

In addtion I found the following info. at Cedars-Sinai Heart Center web site on Aortic disease
http://www.csmc.edu/3866.html#8

Ongoing Postsurgical Care
The continuation of medical treatment following surgery is aimed at protecting the graft, the remaining aorta, the aortic valve and the cardiovascular system generally.
It is also to eliminate left ventricular hypertrophy (thickening) and diastolic dysfunction (where the heart muscle becomes very stiff and inefficient) as a result of long-standing under-treatment of hypertension.
Beta blockers and other blood pressure medications, including ACE inhibitors and ARBs, are the best medications with the longest beneficial affect on survival at the present time. C
alcium channel blockers and diuretics may also be added as indicated.

A CT scan or MRI is done following surgery and then at intervals going forward.
The functioning of the heart and valves may also be viewed periodically by echocardiography. Good dental and oral hygiene, including regularly scheduled dental cleanings, is strongly recommended to maintain a healthy oral cavity. In summary:

• *Postsurgery MRI or CT scan benchmark
• *Annual MRI or CT scan check-up
• *Ongoing blood pressure optimization
• *PT/INR monitoring if on the anticoagulant Coumadin
• *Lifestyle recommendations continue generally the same as prior to surgery

Given this information and the fact the surgeon did an additional CT before she came home, the cardio's plan worries me.
I'd like to ask members on their doctor's follow-up plan, especially from members who had aneurysm repairs.
I want to see if other doctors incldue CT / MRI scan.

According to the same web page in Cedars-Sinai (above the Ongoing Care section on the same page), echo is good at looking at valve function,
but to get more accurate monitoring, CT and MRI (actually better than CT) is necessary.

At this point, I am considering getting a new cardiologist or at least get a second opinion on the follow-up plan from another
cardologist (2nd opinion post-surgery, I never thought I would consider this!)
But if other cardiologists will be the same, not much point in looking for a new one.
MRI / CT is non-invasive (probably less invasive than 2 TEE she had done which made her voice hoarse)
and these scans seems to makes sense in my wife's case .

P.S.Does anyone know if St. Jude mechanical valve and sternum wires make MRI not possible?
She did get an post-op MRI at the hospital when the surgeon was worried about the stroke so my guess it it is OK.

 

[aussiemember]

Hi EJ,

I don't have any great words of wisdom for you as I am still in the waiting room but just wanted to welcome you to the site. I'm sure there will be others along shortly who are able to provide you with answers

 

[tobagotwo]

Just some thoughts...

Before they become dangerous, aneurysms form and enlarge quite a bit. If the echoes pick up any enlargement at all, an MRI would be called for to double check the amount. The use of echoes isn't a lack of concern. It's the certainty that if they're looking for it, they'll spot changes long before there's cause to do anything about it. It doesn't take an MRI or CAT scan to spot the type of growth required to put your wife in future danger. The surprise this time was because no one had been looking.

Don't forget that the part of you that wants to protect your wife is still raging. You still feel that in some, unknown way, you should have been able to see this sooner, or keep it from happening, or been a bigger part of the forces that restored her. For most of this, you've been relegated to the sidelines, due to your apalling lack of thoracic surgery skills. Now you see a way that you might be able to make a difference, and you want to jump in, full combat gear, ready for any threat.

I do know how that feels. My wife has had surgery, too. Unfortunately, if all goes the way these things usually do, there will be nothing more to find. If things go less well, it will still be a long waiting process, and still completely lack any way for you to help that would befit the enormity of your concern and feelings for your wife. Actually, that's a good thing for her, which is what you want. Boring can be a big plus with cardiac issues.

If you think about it, you're upset at the man who found this problem with echo cardiography and arranged for it to be fixed immediately. You feel he doesn't show enough continuing concern. Yet he plans to use the same tool he just successfully used to save your wife's life in order to continue to monitor her.

As far as the statement from Cedars-Sinai, you could find others on the web that are much less stringent than that. It doesn't mean they're wrong, but it also doesn't mean that they're not being plaintively overcautious, either. They have insurance companies to please, too.

However, if it still concerns you too greatly, then consider explaining your concerns to the cardiologist. You can probably come to a meeting of the minds. If anything, I might think echoes every six months for the first two years, as if they're going to start forming or expanding, it can sometimes apparently be triggered by the surgery.

Best wishes,

 

[hensylee]

that's a really excellent post, Bob. You have so much information to offer that is helpful.

Welcome to VR, doyo. This is a great place to be to get information.

 

[PJmomrunner]

Your recent awful odyssey is precisely the one many of us in the waiting room fear. I can only imagine how terrified you must be. I think Bob's final comment (below) is the only way to go in your (wife's) case. I can't imagine a human being who could fail to understand your need and your wife's need for reassurance--in massive doses, for a while at least. It's possible the cardio is actually trying to be reassuring by not offering hyper-vigilence, while fully expecting the patient and her advocate-husband will request it.

However, if it still concerns you too greatly, then consider explaining your concerns to the cardiologist. You can probably come to a meeting of the minds. If anything, I might think echoes every six months for the first two years, as if they're going to start forming or expanding, it can sometimes apparently be triggered by the surgery.

Being the cautious person I am, I would want assurance that all anastomoses could be visualized via echo before I'd agree to only echos on follow-up. I also feel it bears mentioning that 3/4 of aneurysms are in the descending not because it is more prone to aneurysms, but because it comprises 3/4 of the entire aorta. That said, I think monitoring the descending is warranted, whether annually, biennially or whatever, should be discussed as well. Because it is not a problem now wouldn't seem to preclude its being a problem in the future, particularly the portion proximal to the conduit. A baseline brain scan is also warranted IMO.

Because Arlyss says (and I've sought out and found studies to back her up) that the entire thoracic aorta is not always visible on echo, and because I personally can fully understand what I'm looking at on CT images whereas I find echo images barely intelligible (which I realize may not be an entirely rational reason--perhaps I have trust issues?), I too feel more comfortable with CT's (I've not seen an MRI image yet). I am glad my surgeon does both an echo and a CT annually for me. I'm pretty sure I'd want that same vigilence post-op and I'll do my dammedest to work it out, for a couple years anyway.

Doyo, as an advocate for your wife, you rock! Seeking the best possible care for a loved one can definitely take one outside of one's comfort zone on so many fronts. I hope you continue to hang around this forum and coach my husband when the time comes!

 

[Ross]

Well I hadn't had a catscan since my surgery in 2002. My recent GI bleeding event was cause for another catscan and they found a 3.6cm abdominal aortic aneurysm beginning. I would be in agreement of a catscan at least every 3 years if a person could be suspected of some sort of disorder, Marfans or not.

 

[doyo]

PJ,
My surgeon's office said, my wife is in good hand because she has a good nurse taking care of her. I have no medical background, but some nurses at the hospital thought I did. It is a steep learning curve, but I am putting an effort to learn. Wish I did not have to learn all this medical stuff but what I have seen around me and from the posts at this valuable forum made me realized that learning it is helpful.

Bob, Thanks for the post. I learned a lot from you past posts as well.
You made the many good points (objective and well balanced as I have seen in your past post).
Yes, I am keenly aware of the fact this cardio found the condition and along with the surgeon, saved her.
We thanked him many times including during this recent follow-up visits.
That's why this is especially hard. And trying to find a new doctor or 2nd opinion at this stage is the something I wish I did not have to right now.
There are a couple of things I purposely did not mention initially because I wanted to get more objective reponses on this issue alone.

Had a big issue over the warfarin management with his office. Now her PCP is managing her Coumadin because I did not want this contention getting in the way between this cardio and my wife.

During this visit, now that the surgery is over, I expected him to lay out possible causes of her condition and plan for diagnosis and prevention, to explain and educate us. After all, he is the specialist and we are no medical expert.
Before surgery, he said just make it through the surgery and he will go over the causes and future plans.
We did feel he did that during this visit.
Knowing Bicusipid Aortic Valve Disease (BAVD) can also cause dissecting aneurysm and learning that the echo sometimes cannot make the definitive diagnosis for BAV, I asked him if he knew my wife had BAV. I expected him to know the answer from having read surgeon's report (who has seen it first hand) or TEE/CT/MRI reports from the hospital.
He did not know the answer and had to look though my wife's binder to tell us she did not have BAV. It appears that he did not do his homework.
Patient and family live with his/her condition 24 hours/7 days a week. I wish doctors spend a little more time than they ususally do in doing their homework.

Maybe it is a style difference. Maybe I am overly cautious as Bob pointed out and this doctor has more casual approach and does not share all the information with his patient.

As Bob pointed out, I am aware Cedars-Sinai statement is one follow-up approach. There would surely be different view. But knowing that there are more accurate diagnostic tools like MRI/CT, I am hoping to get broader view on the use of MRI/CT by coming here.

Still the fact he found no need to do the echo of the remaining aorta is a concern...

I will have a talk with him when I take her in for the echo in a couple of weeks and hope to get more broad view on this subject before then...

Thanks,
EJ

 

[MrP]

My BAV was replaced with St. Jude and ascending aortic aneurysm resected over two years ago. My first and second anniversary tests consisted of echo to evaluate the valve and CT scan to evaluate my aorta. CT and echo results are stored in memory and compared from year to year with results computer generated.

PS. the St. Jude mechanical valve is MRI compatible.

 

[doyo]

MrP,
Thanks for the input.

Did CT scan of aorta include the entire aorta (including unaffected section), or just the repaired section?

 

[marka]

In regards to CT scans please keep in mind the amount of raditation used in this type of test, it's way above your standard chest x-ray (google it). The way I look at the CT scan is it's the last or only option or a tool used in ER when time is crucial.

The MRI and TEE do not use radiation and do the same job as a CT scan when measuring the entire Aorta.

From my point of view I would not want to have a CT scan once a year when there are other safer options.

 

[BDMc]

Way To Go!

Way To Go!

EJ, It is heartening to see someone being such a great patient advocate! If your wife didn't have therest of her aorta scanned, I think she should, for the obvious reason you mentioned! I don't know if she can have an MRI or not, but that appears to be a better choice from what MArka said about the radiation in the CT scans. Most people these days, only deal with the imediate problem in front of them, with little or no realistic plan for the future, or why the problem developed to begin with. Unfortunately doctors are no exception. Try not to offend them, but don't stop asking the questions until you feel safe with what you know! My father was a physician, and I was braught up revereing doctors and hospitals. I've lived in the Boston area all my life, and was led to believe it is one of the worlds medical capitals. There are many great doctors here, but there are even more, that do not make the time to care for their patients. I have many, many horror stories of mistakes made. Stay diligent! You've inspired me to make more of a fuss about my own care! Thanks! PS: Don't forget to take care of yourself! It is extremely stressfull to go through all this, and I think your role is vital!

 

[doyo]

marka,
Thanks for the radiation exposure with CT. I knew CT had the radiation but did not know how much compared to X-ray.

BDMc,
Yes, I find it is a delicate balancing act: Being firm without offending doctors.

I do my best not to offend, but try to remind myself that we (my wife and my kid and me) have a "slighlty" higher stake in this matter in order to be nice but be firm.
In short 7 weeks, I had a pleasure of meeing wonderful, good medical people but also some not so good.

Believe it or not, I have a very laid-back personality and stress rarely gets to me. But I began noticing it is getting to me lately. Just ordered some relaxation/meditation CD's and books from Amazon to keep me healthy and sane I heard some hospitals used them.

 

[Arlyss]

Questions about Follow Up Care

Questions about Follow Up Care

Dear EJ,

In 7 weeks your family has been through a tremendous amount. I want to tell you how wonderful you all have done to reach this point, your wife, yourself and your 7 year old! It is very understandable that this has impacted you, and I want to encourage you in anything that you find helps you deal with what has happened. It is the most important job you will ever have and also the most stressful - learning and partnering with physicians to give your loved one what is state of the art today! Your wife is unusual in that only mild symptoms were associated with her extensive dissection. It is so important that everyone who cares for her keeps an open mind regarding her individual experience. Do you know if there is any history of aortic dissection/rupture in her family - what is called familial TAAD?

Not so many years ago, aortic surgery was very high risk, even in the most experienced hands. It has come a long way, and so has imaging technology and the abilitiy to "see" the thoracic aorta. Just in the 5 years since my husband's aneurysm was diagnosed, new imaging capabilities have become available. Examples are cardiac MRI and 64 slice CT. From the variety of tests available, some thoughtful choices need to be made, always with what is best for the patient in mind. First of all, the test chosen has to be appropriate in terms of its ability to show clearly what needs to be seen. For the entire aorta, that is the MRI or CT.

Sadly, sometimes what is best is not available to the person who needs it - perhaps because they cannot travel to where it is, or their insurance will not pay for it and they cannot afford the cost out of pocket. (CT is more widely available and also less expensive than MRI.) Sometimes metal in the body - such as a pacemaker - makes it impossible to have an MRI. However, as has already been mentioned, with CT the exposure to x-rays is a concern. X-rays are cumulative in the body throughout our life, and it is best to avoid them. However, it is a trade off in some situations, if there is no other way to look at the aorta. My husband had one CT locally, when his aneurysm was first found, and always has had MRIs of his aorta going forward since then. If he had metal that precluded him from having MRI, he would out of necessity have to have CT. He did have a 64 slice CT prior to his surgery this year, and it provided important detail before the surgeon went in which justified the radiation dose. But routine CT scans of his aorta, no, he has MRIs instead. He does have transthoracic echo (we are very fussy about the technician who does it!) to check his heart valves and chambers, but not to monitor his aorta. It is impossible for transthoracic echo to see the entire aorta, and very often technicians do not even go very high above the aortic valve. It is not easy to even get the ascending aorta with TTE, although it can be done. And we all (physician, my husband and I) want the clearest possible picture of that Dacron graft and aorta!

For all who read this thread, I must say something very plainly. Please don't let anyone lull you into complacency about the aorta. Aortic disease is a tough opponent. The entire aorta must be followed. If it is not, one is guessing - and the aorta can be extremely unpredictable.

There are things that can go wrong - problems (pseudoaneurysms for example) at the anastomoses (the suture lines) or with the remaining aorta. Surgery did not "cure" anything in terms of what may happen in the remaining aortic tissue. And if part of the dissected aorta remains, that situation must be understood to be different from tissue that has never torn. But it all can be monitored, and that is what imaging does. This imaging needs to look at everything, and the eyes that read the test images need to be expert eyes. To be sure those suture lines are looking good - to be sure to measure the aorta accurately and determine the growth rate over time. Then if further surgey is needed some day, it is not an emergency but a planned event.

There is no specialty in medicine for the thoracic aorta. However, there are some surgeons in the US as well as other countries who have pioneered thoracic aortic surgery. They interpret the images of the aorta, they teach others, and from their databases comes information about the thoracic aorta. Their work is what we have to help understand what may happen, because they have followed their patients and published their results.

I want to share a reference here that is of interest regarding follow up after surgery for acute type A aortic dissection. This work gives some indication of what is known based on following these people's aortas over years. Unfortunately, one does not know how similar to any of these people they might actually be. So, each individual needs to be carefully followed.

http://www.aats.org/annualmeeting/Abstracts/2005/9967.html

Perhaps it would be helpful to list Dr. Isselbacher's presentation again here regarding the evaluation of the thoracic aorta, since he reviews the various imaging approaches

http://www.conferencearchives.com/aats2006/sessions/1500.PGAC.10/session.html

Best wishes to you and your family,
Arlyss

PS
In an emergency, CT scans are fast and usually available even in smaller centers.