When to schedule surgery. What are symptoms

[Eva]

............
I had gone to a thoracic surgeon who does a lot or valves first when my echo gradient was .5. He wanted to operate as soon as the cardio could get a cath done, not to decide whether to do it, but rather to be sure there was nothing wrong other than the valve. The cardio said I didn't need to return to the surgeon but just get snother echo in a year (April) ............

Sounds like a good plan Chuck.

To my mind, the primary benefit that Cardiologists provide is a diagnosis regarding your valve.
Once you have that diagnosis, IMO, Surgeons have a better 'feel' for WHEN to proceed with Surgery and the potential outcome, after all, that is 'what they do'.
............
Just tell them what is wrong with your valve and bring copies of your latest Echo, Cath, and any other test results with you. ............
Fortunately, it seems that you have a Very Good and astute PCP so that should not be a problem.

......... Question to ask the surgeon is:
"What are the Risks and Benefits of Proceeding versus the Risks and Benefits of Waiting?"
......... for most cases of a deteriorating valve, there is little benefit in waiting and proceeding ASAP to surgery offers the best opportunity for maximizing the surgical benefit and a having a good recovery. ...............
'AL Capshaw'

When my cardio dropped the news on me that I needed surgery, he wanted me to see him again in another six months and then he would decide!! I started interviewing surgeons right away...I already was feeling more tired every day, short of breath even when I was sitting down, which I thought were sighs until my surgeon asked me the questions!

I did not go back to that cardio and I had my surgery within six month ... a surgery I could have done at least two years earlier, if my cardio had not ignored my symptoms then.
The earlier the surgery takes places, the earlier you start feeling better unless you have any health issues and your doctor would prefer to wait!

Good luck and keep us posted.

 

[ski girl]

Hi Chuck (and everyone)-

I think I have the best cardiologist in the world!! Two years ago my mean gradient was 47 and valve opening 0.9 and at that point he wanted me to consider surgery, but I was competing well in my sport and felt fine other than the same stuff I'd had since I was little. I was out of there like a shot and only went back in July because HE called and told me I was overdue by a year for my appointment. Now I have a valve area 0.8 and a mean gradient of 75-80 and only in the last week or so would I say I have any symptoms - symptoms being feeling different to how I have my whole life (which is: great but abysmal at running up hills).

I'm in for a new valve in three weeks.

To me it has been the start of symptoms that has caused the decision to have surgery, so I'd lean towards not having surgery if your gradient is only 25 and you don't feel any different. Something else may kill you long before the valve starts to give up the ghost and cause symptoms, and you won't have had the trauma of such a major surgery. Is that a bit macabre? Overall though I think when you are mentally ready, you'll know it. It's taken me 39 years to get there and I was offered surgery when I was 14!

Good luck making what is a MASSIVE decision and keep your fingers crossed for me on 7th October!!

 

[LonMel]

Are you saying there is one going on in the US beside this one? http://clinicaltrials.gov/ct2/show/NCT00530894?term=sapien&rank=2

I know that my hospital is participating in the trial. When I planned on my procedure, one of the things I discussed with my surgeon was making sure that my root and aorta sizes was "TAVI" ready. Initially, I thought my aortic valve was going to be repaired but learned after that it was too far gone and had to be replaced. Either way, I knew that down the road I would need a replacement in 10-20 years. By that time the transcatheter approach would be perfected for the "routine" replacement.

 

[Lynlw]

I know that my hospital is participating in the trial. When I planned on my procedure, one of the things I discussed with my surgeon was making sure that my root and aorta sizes was "TAVI" ready. Initially, I thought my aortic valve was going to be repaired but learned after that it was too far gone and had to be replaced. Either way, I knew that down the road I would need a replacement in 10-20 years. By that time the transcatheter approach would be perfected for the "routine" replacement.

I realize that and am looking forward to the 23rd when they release some of the results so far. I was just responding to Chuck's statement that
"I know they have done some percuntaneous replacements this fall, after they were approved for general use so we will talk about that too."
that so far they are not approved for general use, just available for higher risk patients that can be in the trials.

 

[chuck barton]

Hi. Since everyone on this site has far more knowledge and experience than I, regarding valves, I apologize in advance if I display further ignorance with this reply since it seems to have elicited some interest in a sub topic TAVI. When I went to see my cardiologist in April, when we were discussing the effects of delaying the surgery, he referred to several patients, of the Woodlands Heart Center, who were too high risk to tolerate the conventional replacement surgery. He stated that he was expecting the percuntaneous replacement to be available at Memorial Hermann in Houston by late fall. Whether that happened or not I do not know.
In addition, the University of Miami has published videos which include parts of the procedure being performed there, which was the first time it was done in Florida. The patient did not appear to be high risk as he was still climbing 2 flights of stairs before the surgery (with some shortness of breath). In addition Massachusetts General and Stanford, among others have referred to the procedure being done there.
I will be talking to my surgeon on the 30th and might consider waiting for a year if the TAVI procedure will have more background. I do believe that there are a number of hospitals which are doing the TAVI procedure.
Thanks to everyone

 

[Lynlw]

Please don't ever appologize, for sharing anything you learn from your doctors. This is how we all learn what is going on.

I know several people think they will be done for more people soon. I don't know how they are going to increase the number of people that can have it. I hear some talk of offerring it to people in their 80s regardless of their health as the next step and others are pushing for more lower risk patients to be able to have it, regardless of their age.
I know they will be releasing some of the clinical trial results so far, this week and some people feel who can get it will be changing shortly. Others think it is still a long way off.

AS for IF you (or anyone) should put off surgery in the hopes of avoiding open heart by waiting for TAVI to be available for more people, first I would make sure waiting won't cause permanent damage to your heart. It would be a shame to not be able to have as full of a recovery by waiting for TAVI compared to having open heart replacement now. Especially since the stats ARE so good for 1st time valve replacements. Heck for all you know you could have surgery and be fully recoverred back to living life, before you could have it replaced by cath.

I also would make sure IF it were available IF you would even be a candidate, when they are available for more people. Right now for the trials at least, under exclusions are
2 Aortic valve is a congenital unicuspid or bicuspid valve; or is non-calcified
3 Mixed aortic valve disease (aortic stenosis and aortic regurgitation with predominant aortic regurgitation >3+)

This is just MY OPINION but I don't think at least right away, if you have a bicuspid valve you would be a candidate for TAVI. Since they haven't done then in any trials, I doubt they would once they are approved for more people.
So I would try to find out if possible if you have a bicuspid valve or not, or even if they think you do.

Right now they are doing them (as part of the trials) at 26 centers http://clinicaltrials.gov/ct2/show/study/NCT00530894?term=sapien&rank=2&show_locs=Y#locn has the centers and contact info listed at the bottom of the page.

Pulmonary valves by cath ( Melody valve) WERE already approved in the US, but not nearly as many people need pulmonary valves, usually children or adults that were born with some complex Congenital Heart Defects, and I'm pretty sure to be a candidate you already had your pulm valve replaced once. But as far as I know that is the only percutaneous valve approved right now. The Sapien Aortic valve will be next and there are tons of companies working on their own valves but tit will be a long hwhile before any of them are available in the US.

 

[Cooker]

I don't know about all the numbers and measurements but I will just tell you what I was told by my Internist, Cardiologist and Surgeon ... "the time for surgery is before any damage occurs to the heart" ... I will also say that the hardest thing I have done is walk through the hospital doors feeling like I had no symptoms ... after a full recovery I realize that I had symptom and was just chalking it up to age ... good luck ... peace out:cool2:

 

[deck1434]

My valve opening was .8 a year ago...echo scheduled for January. My Cardio is waiting for symptoms to do the AVR because I'm (relatively) young, age 49. Symptoms he's looking for include:
Fainting
Swollen Ankles
Chest Pain
I was wondering if anyone can describe to me what their "chest pain" felt like. I get this wierd thing sometimes that feels like my heart (or something in the vicinity of my heart) is doing a flip-flop...feels like a muscle strain...which sort of burns, then goes away. Lasts about 30 seconds. It doesn't effect my breathing, or anything else however, so perhaps it is a muscle strain...and I seem to be fine with exercise (though I'm no marathon runner, nor was I ever one)!

Any thoughts would be much appreciated. I checked the thread about symptoms and didn't get anything specific out of it.

Best, Dianne

 

[Duff Man]

My valve opening was .8 a year ago...echo scheduled for January. My Cardio is waiting for symptoms to do the AVR because I'm (relatively) young, age 49. Symptoms he's looking for include:
Fainting
Swollen Ankles
Chest Pain
I was wondering if anyone can describe to me what their "chest pain" felt like. I get this wierd thing sometimes that feels like my heart (or something in the vicinity of my heart) is doing a flip-flop...feels like a muscle strain...which sort of burns, then goes away. Lasts about 30 seconds. It doesn't effect my breathing, or anything else however, so perhaps it is a muscle strain...and I seem to be fine with exercise (though I'm no marathon runner, nor was I ever one)!

Any thoughts would be much appreciated. I checked the thread about symptoms and didn't get anything specific out of it.

Best, Dianne

The words you used to describe the palpitations, "flip flop", instantly remind me of many premature ventricular contractions I've had. To me, it literally feels like my heart turned in to a trout and started flopping around in my chest. It kind of hurts, but not much. It's more scary than anything.

I believe I've had short bouts of ventricular tachycardia which really do hurt, at least to me. V-tach is different from pvc's, or at least that's how I understand it.

FWIW, you don't necessarily need to be symptomatic to have PVC's or v-tach. For many people, they just happen. I have a mean gradient of like 9mmhg and a peak of like 27.

The symptoms your cardiologist describe kinda sound like heart failure to me. For whatever reason, they think they're being a caring doctor by waiting until your heart is basically failing and and being harmed (perhaps irreparably) by the bad valve.

 

[MarkG87]

I'm having surgery next Friday the 19th. When I had a check up in July, some of my numbers were getting worse and my cardio told me he wanted to see me in 3 months this time. Right before that appt I just finished moving and while moving starting really experience shortness of breath and cold sweats. Right then he told me it was time for the surgery, and wants it done before any damage is done to the heart. Very glad that they feel that way, I'm 51 and have a lot of living to do still.

 

[ALCapshaw2]

To my (engineering) mind, Symptoms are a sign of DAMAGE to the heart.

Many Surgeons (and cardiologists) use an effective Aortic Valve Area of 0.8 sq cm as a 'trigger' for recommending surgery.

Old School Cardiologists are notorious for wanting to wait until symptoms are pronounced before recommending surgery, often to the dismay of surgeons who prefer to FIX the problem BEFORE there is permanent damage to the Heart Walls and Muscules. Sometimes it is best to pay attention to the numbers, especially if they are confirmed by 2 separate tests (typically echo and heart catheterization) than to wait until symptoms are causing problems.

 

[Protimenow]

My perspective may be just slightly different. I was told when I was in my 20s that I would need to have a valve replaced 'in about 20 years.' I progressively got worse -- and, at 41, I had a good job, good insurance, and a question for my doctors: 'how sick do I have to be before I need the surgery?' The answer was that, while I was still pretty strong, I should have the surgery done.

I figured that, still being fairly strong - and still reasonably young - my outlook for recovery was better than it would be later.

I never regretted that decision.

Less than a year after my AVR, I had lost my job and insurance. If I had waited for my surgery, it may have been a serious hardship for me and my family -- and I may have just postponed it until it was too late to be of much value.

If you've got good insurance, and the signs that a surgery would help now (and that delaying could negatively impact your heart), I'd seriously think about reasons for delay. I'm certainly not trying to tell you what to do - just to give you my personal perspective.

Good luck with whatever you and your doctors decide.

 

[deck1434]

Waiting for Symptoms and Insurance Issues

Waiting for Symptoms and Insurance Issues

Thank you SO MUCH for your replies. I am going to discuss it with my cardio!

With regard to insurance coverage and jobs...I lost my job in August, my husband lost his a year ago...we have a 12 yr old and a 9 yr old...We're on COBRA due to my pre-existing conditions and the monthly payment is going from $1,843 to $1,993 January 1st.

It has become extremely expensive to stay alive. I'm going to look into getting my family on a different (cheaper if possible) plan, but what can I do about myself?! I have other pre-existing conditions as well...Perhaps the surgery decision should be a financial one as well as unemployment can't cover our bills so we're using our retirement monies, which naturally won't last forever...scary and hard...Dianne