Surgery Timing

shop deals on amazon
Shop deals on ebay
Advertise with us
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
M

masterji

Hi All,

I am new to these forums, but have already received very helpful information. I next wanted to see if I could get some suggestions on the following decision. My apologies for the long post.

I was diagnosed with a Bicuspid Aortic Valve about an year ago.Since then, I have been seen at two hospitals (Mayo and Northwestern). The issue is that my cardiologists and surgeons have slightly differing opinions on the timing of surgery.

The findings of my tests are as follows: a) One hospital confidently says that my regurge is moderate (based on Transthoracic echo only). b) The other hospitale did a TTE and a TEE and says it is severe. Both the hospitals show that my heart is mildly enlarged (upper end of normal). I have no symptoms that I can tell. The only reason I went to the doctor was I was having some palpitations. The palpitations have since almost completely gone.

One of the surgeons is saying that I should go for the surgery now. His argument is that if the surgery is not done now, there is some chance that the effects may be irreversible. The other surgeon says that it is not yet time for surgery and I can be monitored closely.

I know this is probably a subjective topic, but I was still wondering if I could get some direction from people on this forum.

I would appreciate your thoughts.

Sincerely.
Masterji
 
It probably is subjective, based on the surgeon's experience, their bias, etc. Do you have more faith in the opinion of one surgeon over the other? It sounds to me like you may need a third (tie breaker) opinion.
 
Hi Masterji:

It sounds like both surgeons are probably making reasonable judgments based on different data. Why not get a copy of the TEE to the surgeon who hasn't seen it and see if their judgments coincide? Also, what prompted one surgeon to order a TEE? I would hope that at least one motivation was to assess the size of your ascending aorta as many BAV patients do have dilated aortas. Has either surgeon spoken to this issue? If not, why not? Perhaps the answers to these questions will reveal your path.
 
We are going through the same thing at the moment, with the them having different opinions and getting the timing right, allthow it is for a different condition. I just wanted to wish you best of luck and hope you can get things sorted out and things work out for the best. Paula
 
Hi All.

Thanks for the best wishes. PJ, both doctors have seen each other's reports and their suggestions are despite those differing data. 1)They say that the Echos are subjective and there is also the factor of the skill of the readers.
2) I think that one more doctor is more focussed on the fact that there may be a possibility of irreversible damage to the heart. Both agree that I will definitely need surgery at some point. But the one recommending surgery is making the point that if it needs to be done then why take any chance that my heart might get enlarged to a point that it may not recover (and that buying couple of years at my age is not useful).

Regarding ascending aorta, they did a catscan for it (an year ago) and that it is mildly enlarged (but no corrective action is needed due to it, at least at the moment).

Thanks.
Masterji
 
masterji said:
One of the surgeons is saying that I should go for the surgery now. His argument is that if the surgery is not done now, there is some chance that the effects may be irreversible. The other surgeon says that it is not yet time for surgery and I can be monitored closely.
Click to expand...
I wonder if the second surgeon would put a time frame on that; does he mean ten years or one year? From my own experience, my valve went south in a matter of months, to the point of closing as they began surgery; had surgery been delayed slightly, there would definitely have been irreversible effects, and I wouldn't be here.
Would it make sense to look over your life and figure out what time of year you would like to be recovering from surgery? You could schedule surgery for just after Christmas, and spend the lousy Chicago winter inside and warm. Just a thought.
 
Jim,

The second surgeon would like to keep doing the echo every 6 months, but it sounds like the wait time could be anywhere between 1 year to 5 years.

Thanks.
 
Masterji which surgeon said what?

I'll be the first to tell you that if one says NOW, and you need a tiebreaker, see a third. Mine was left go far too long and I am in pretty severe Cardiomegally. My heart is so large, it can't be measured by echo. Along with the enlarged heart comes congestive heart failure and other things that are not nice to have. My advice, pay attention to the man who wants to take action now.
 
Old School Cardiologists liked to postpone surgery until the last possible moment. Surgeons like to operate BEFORE there is Permanent Damage to the Heart Muscles and Walls.

Now that OHS has been perfected to a high level art and the risks of first time surgery are extremely low (1% mortality, 1% stroke), many Cardiologists are coming around to the Surgeon's way of thinking.

FWIW, when my Aortic Stenosis was discovered, one cardiologist recommended surgery ASAP through a local surgeon. I sought a second opinion and that cardiologist (in consult with a different local surgeon) thought that I could get 3 to 5 more years out of my native valve with proper medication. ONE year later, my effective valve area dropped to the 'trigger point' for surgery, confirmed by both Echo and Cath. In the two months it took to meet a top surgeon at the major heart hospital in our state, I was in severe condition. I believe I got there 'just in time'. I've become a believer in the "Sooner is Better" philosophy for Low Risk cases. As you can imagine, timing for higher risk situations can be argued from both perspectives.

'AL Capshaw'
 
This is a hard one....I think it's best like someone said earlier, get that assending aorta checked out ASAP, unless you already know it's ok.
Because that is what got my surgery on the fast track. Not my valve, I needed that fixed but the 5.3 cm aorta was the kicker.
Another thing is, do you know how long your valve has been this way?
They just found it right? I had mine for years.
The blessing in all this is they found it without you having symtoms that were too bad.
The third doctor is a really good idea.
I feel for you because neither is fun, waiting or going forward with the surgery. This sounds like it will have to be done, no way around it. Bummer, but I try to look at the good side, you CAN be FIXED!!! That is so good! You will be ok no matter what. Hang in there and know we're all here for you!
 
To add another voice, my mitral regurgitation looked mild/moderate on a regular echo, but was severe with a TEE. The TEE gives a much better look at the valve and from a very different angle and can show things that a regular echo cannot. That said, I did have symptoms, but they were very mild unless I was doing heavy exercise. I also had symptoms that I didn't realize were symptoms until I had surgery and they went away.

I would agree with the person to have make sure both surgeons are looking at the TEE before deciding how to proceed.
 
There is absolutely nothing to be gained by waiting too long !!!!!!

I waited and stalled as long as I could, all I did was damage myself more.
Look at your test results, see a third doc if you like, and move forward.
Best wishes.
 
Thanks for your responses. It appears that it would be better to erro on getting the surgery done early than later.

Ross: It was the doctor who had ordered the TEE who suggested the early surgery.

Mike: A question for you. I also have a pretty rigorous exercise schedule. Can I ask what type of symptoms I should be looking out for (even if they are mild).

Also, I had one more question regarding the aortic root. I had my catscan done one year ago and they found it to be mildly enlarged at that time (I think it was 3.4 cm). Do you know how frequently do they recommend imaging for the aortic root? I have been having my echos done every 6 months.

Thanks.
Masterji.
 
The other issue is our old saying "The worse it gets the faster it gets worse." For you, this means that waiting could put you in a position where you have a visit where this doctor that wants to wait ends up saying "Wow, we need to get you in NOW!" and you're faced with a rushed surgery and a life in a mix-up because you didn't have time to plan hospitalization and recovery time.

When I had my surgery 16 years ago (almost) the school of thought was to wait until they saw damage being done in younger patients. Because of that, I had a longer recovery time and my heart will never be 100% (although I'm grateful for the level of activity it allows me, which is pretty good.)

As was mentioned, it now appears that most like to get in there before permanent damage is done. There's no way to tell when the line will be crossed between temporary and permanent damage because each person is different.
 
PJ, both doctors have seen each other's reports and their suggestions are despite those differing data
Click to expand...
Click to expand...

Masterji, I would never suggest that a surgeon make any determination from a report. Both surgeons should be looking at the TEE itself, not the TEE report--because of the subjectivity of interpreting the data that you mention. You've already gone to two very reputable centers with known experts on staff. I would simply have the TEE center send a copy of the TEE to the other surgeon--or if you'd rather, have a copy sent to yourself and get it to the other surgeon yourself. I doubt that, given the opportunity to look at the same images, surgeons at these two centers would see things as differently as "moderate" vs. "severe".

I called Northwestern myself last December to make an appointment with Thomas Gleason, who had been recruited two April's previous to head up the aortic clinic at NU. I was told he was going (back?) to Pittsburgh. Who, if anyone, has taken his place? Feel free to PM me if you'd rather.
 
Oh, Masterji, I forgot: I have my aorta imaged (CT) annually. And incidentally, when BAV's have enlarged aortas, it is typically the ascending aorta that is most enlarged, not the root (although there can be enlargement anywhere), so be sure they are measuring at points all along the ascending, arch and descending aorta. This, of course, isn't to suugest your enlargement isn't at the root...it's just a matter of thoroughness.:)

Some reading that might interest you:

http://circ.ahajournals.org/cgi/content/full/98/18/1949
 
Hi PJ,

Thanks for your responses - they were both very helpful. I just sent you a skype message; please let me know if you don't receive it.

Thanks.
 
Masterji if Northwestern is one option, see if Dr. Patrick McCarthy will review your TEE and offer up an opinion. The man saved my skin when my aneursym ruptured and frankly, he is one of top surgeons in the United States. Unfortunately I lost him from the Cleveland Clinic to Northwestern, but if he's in your woods, I highly recommend him.

http://www.nmff.org/findphysician/physician.asp?id=nmff081
 
I see in your profile that you are a student. But I do not know how old you are, sorry, if you've mentioned it before. IF you were borderline age group for deciding tissue or mechanical, maybe I could understand waiting. But, since your heart is already showing signs of enlargement, and you know you have to have the surgery eventually, why not look at your personal schedule and just pick a good time in your life to get it done. I honestly do not see the advantage in waiting.

I did the dance with my cardio who said, ah, keep waiting. I had stenosis, closing of the aortic valve, no regurgitation. When the echo finally looked bad enough to have her suggest going to a surgeon, several other things in my 50+ year old body needed attention and I ended up putting off surgery for 4 months. That was a scary emotional time for me. Waiting sucks.

The surgery is no picnic, and frought with the usual dangers, but it is inevitable. Recovery is a journey. Why make recovery more difficult with a heart that has been damaged by waiting.

If it were me, I would absolutely get a third opinion. This seems kinda nuts that there is not even a close consensus.

Keep us posted.

And maybe tone down the workouts for awhile!

Marguerite
 
I have to agree with everyone above, err on the side of caution - which to me is fix this before something becomes unfixable.
A 3rd opinion is good, a TEE is MUCH more accurate than an echo, be sure and get your aorta checked out and if there is ANY question, get it fixed while they are in there.

There's my 2 cents.
 
You must log in or register to reply here.

Latest posts

Back
Top