3d tee

[attissy]

Hi everyone,
A lot has happened over the last week or so and I just wanted to share my experience and find out if anyone else has been through anything similar and/or has had a 3D transesophageal echocardiogram.

About a month ago, I started to develop chest pain. At first, I attributed it to a pulled muscle but when it would not go away I ended up in the ER. They kept me over night for observation and did a CT scan to look at the size of my known thoracic aneurysm and performed a stress test. The aneurysm grew from 4.3 to 4.6 in a two-year time period, but was otherwise stable, and the stress test was negative. They told me I probably pulled a muscle. Two weeks later I had an appointment with my cardiologist. I told him about my symptoms and he examined me and immediately set me up for an echo. On the echo, he saw what he described as "a rather significant increase in the aortic annulus with a more prominent perivalvular space anterior to the aortic valve sewing ring". He sent me to the hospital for possible dissection versus endocardititis. In the hospital, he performed a TEE which he read as "aneurysmal dilatation of the aortic root pulling away from the anterior portion of the mechanical aortic valve sewing ring with a small perivavular leak. The aortic annulus measures 4.2 cm, larger than the aortic valve sewing ring." I then met with a cardiothoracic surgeon, who took me off Coumadin and tentatively scheduled surgery in three days from our meeting. In the meantime, he had another cardiologist look at the TEE (this cardiologist also happened to work for the same healthcare system as the surgeon). After this cardiologist reviewed the TEE, he determined that it did not look much different from the last TEE I had back in 2008, and really only showed a small leak - not the valve pulling away from the sewing ring. I was then discharged and told to follow up with the surgeon in a week. In the meantime, the original cardiologist (my cardiologist) has scheduled a 3D TEE to get a better look. Needless to say, I have been very anxious about this whole thing - going from having a second open heart surgery one minute to being discharged to home with no explanation of the chest pain other than possible pericarditis. In any event, I go tomorrow to have the 3D echo performed and am wondering if anyone else has had one of these procedures? If not, has anyone ever received such different opinions on a TEE before? I thought those were supposed to be pretty clear cut. The cardiologist explained that because my mechanical valve causes an artifact it is hard to see this particular area clearly. Is that true?

I will find out tomorrow if I need to have another surgery - which I am praying will not happen because I am not sure emotionally I am ready for it - but I will keep you posted. Thanks for letting me vent and for listening.

Tiffany

 

[Nancy]

mechanical valve causes an artifact it is hard to see this particular area clearly. Is that true?

Yes, that is true. It does happen.

This is a pretty scary time for you, but it sounds like they are really trying to get the very best picture of what is going on there.

Wishing you good luck with the procedure.

 

[drivetopless]

Good luck, Tiffany. You are the first I've heard of getting a 3D TEE.
All the uncertainty you've been experiencing is enough to give you symptoms, so try not to worry until it is time to worry.

 

[nngbwh]

Sorry to hear the bad news. Hope everything works out tomorrow for you. Keep us posted.

 

[attissy]

3D TEE - Valve Detached - Need 2nd Surgery

3D TEE - Valve Detached - Need 2nd Surgery

Well, unfortunately I found out yesterday from the 3D TEE that my valve is indeed detached in two separate places and I will require surgery to replace the valve (again) and deal with the aneurysm. Certainly not the news I hoped for and I am still not sure it has sunk in yet, but I just wanted to let you know what the test showed yesterday. Thanks to those who provided support to me the last few days - it really did help a lot going in for the echo. I will keep you posted as I get a date for the surgery

 

[ALCapshaw2]

Attissy -

I'm wondering why your Aneurism was NOT addressed in your First Surgery.
Enlargement of an Aortic Aneurism is a Known complication following AVR if not properly addressed.

Was your native aortic valve BiCuspid?

BAV's (Bicuspid Aortic Valves) are often a sign of a Connective Tissue Disorder which can be 'tricky' to deal with in surgery.
IF you have a Connective Tissue Disorder (CTD), it is conceivable that the original stitching might not hold properly.
That makes me wonder how much experience your first surgeon has dealing with BAV and CTD.

I always advise BAV patients to find a Surgeon with considerable Experience dealing with BAV and who KNOWS how to recognize signs of Connective Tissue Disorders and How to Deal with them. We have had at least one other member who had to have their first Mechanical Valve Replaced due to a stitching failure. I would urge you to consult with a Highly Regarded Aorta Surgery Surgeon.

The Top Aorta Surgeon at the Mayo Clinic is Dr. Sundt.
He trained under the well known Aorta Surgeon Dr. Nicholas Kouchoukas in St. Louis, MO (who is still in practice).
Dr. McCarthy at Northwestern University in Chicago (and previously the Cleveland Clinic) is another one to consider.
The Head of the Aorta Surgeon group at Cleveland Clinic is Dr. Svensson.
There are also some good Aorta Surgeons in Texas (Texas Heart Institute in Houston and Dr. William Ryan in Dallas/Ft. Worth area)

'AL Capshaw'

 

[kfay]

Attisy, I'm sorry that your latest test did not give you the good news you had hoped for, but am glad that at least you have found this problem before it was too late. I agree with Al, I would probably look for a very experienced surgeon for this surgery. Without looking, I'm thinking you are in Wisconsin, so have you considered calling the Mayo?

I know you are in shock right now, but on the up side (at least in my mind), it doesn't sound like you will have a ton of time to stress about all of this. Please keep us posted. I wish you the best of luck.

Kim

 

[attissy]

Thanks for the great advice. I have never considered looking into the Mayo Clinic, but I am going to now. I also heard great things about the Cleveland Clinic, so we have already started to look into that a bit more.

Al - My native valve was a bicuspid aortic valve, and supposedly there was no dilation or aneurysm at the time of my first surgery. They are saying that the growth of the aneurysm post surgery at the root caused the valve to detach. How is a connective tissue disease diagnosed? Are there tests or other symptoms? Since the aortic root will be now be replaced at the same time as the valve, will the stitches of the valve hold better since they are not connected to tissue? These are probably questions I will also need to ask the surgeon, but you seem to know almost more than some of the doctors I have already talked to!

I have an appointment tomorrow with a highly regarded cardiothoracic surgeon in the Milwaukee area and I will be asking him these questions along with others that I can think of from now until then. If you have any other suggestions, I would greatly appreciate them. My mind is in a fog right now and a bit of shock.

And you are right Kim, the up side is I won't have time to stress about this too long - thanks for the positive thinking!

 

[Lynlw]

I am sorry to hear you are going thru this. and agree with the adivce you got s far. I know you've had concerns about stitches on the valve for a while from reading your older posts. One of the best places I know of to find out about BAVD is http://bicuspidfoundation.com/ maybe you can get some answers there, or at least think of more questions to ask the surgeons you see.

 

[Lily]

Tiffany, I'm sorry to read this also. I'll bet you're shocked. So glad they discovered the problem before something worse developed. This is considered fairly emergent, isn't it? Did they tell you not to lift anything heavy?

It might be helpful for your surgeon(s) to see a copy of your last operative report. If you don't have that, the hospital should be able to quickly get a copy to you for your records, which you can copy for your surgeon, or they can send it directly onto your surgeon. Also, pathology probably looked at your native bicuspid valve and there may be a helpful pathology report in your hospital chart somewhere; this may offer a further clue as to whether they found your native tissue unhealthy in anyway. (Pathology considered mine "a little thin" as per my surgeon.)

Keep us posted. Best wishes

 

[ALCapshaw2]

Thanks for the great advice. I have never considered looking into the Mayo Clinic, but I am going to now. I also heard great things about the Cleveland Clinic, so we have already started to look into that a bit more.

Al - My native valve was a bicuspid aortic valve, and supposedly there was no dilation or aneurysm at the time of my first surgery. They are saying that the growth of the aneurysm post surgery at the root caused the valve to detach. How is a connective tissue disease diagnosed? Are there tests or other symptoms? Since the aortic root will be now be replaced at the same time as the valve, will the stitches of the valve hold better since they are not connected to tissue? These are probably questions I will also need to ask the surgeon, but you seem to know almost more than some of the doctors I have already talked to!

I have an appointment tomorrow with a highly regarded cardiothoracic surgeon in the Milwaukee area and I will be asking him these questions along with others that I can think of from now until then. If you have any other suggestions, I would greatly appreciate them. My mind is in a fog right now and a bit of shock.

And you are right Kim, the up side is I won't have time to stress about this too long - thanks for the positive thinking!

I'm not sure How Surgeon's test / recognize the signs of Connective Tissue Disorder(s), just that they can.
I have read other reports from patients who had aneurism(s) develop after AVR and it is usually coincident with 'weak tissues'. I also recall reading about a 'sleeve' or other method of re-inforcing the Aorta / Aortic Root to prevent the development of dilation / aneurism after AVR. That's why I encourage BAV patients to seek out Surgeons who have experience dealing with BAV and CTD issues. FYI, Surgery of the Aorta is considered to be another step above 'mere Valve Replacement Surgery'.

That said, it would be wise to ask this surgeon you see in Milwaukee tomorrow about his BAV and CTD experience and results.

I recall 'pestering' two members who wanted to 'stay local' to at least seek a second opinion from Surgeons with considerable Aorta Experience (Dr. Miller at Stanford and Dr. Sundt at Mayo). After meeting these surgeons, both members realized their local surgeons couldn't hold a candle compared with these specialists and immediately set a date with the 'experts'. They both came through their replacement surgeries with good results.

You might want to do an Advanced Search (see the Red Line at the top of the page) for keyword "Sundt" (or any of the other surgeons) to find posts from members who have used his services. Be sure to scroll down to the Date Box and select "Any Date" from the drop-down menu.

'AL Capshaw'

 

[catwoman]

Attissy:
Sorry to hear that you're facing a return trip to the OR. Good luck with your search for the right hospital for your next AVR.
BTW, I'm a cheesehead, too. I was born in Milwaukee while my dad was attending engineering school there.