Waiting Room

[RandyL]

I have read many posts of people waiting for their valve to get worse to go for surgery. I just don't understand this. Example: I was .8 on echo and 1.04 on cardio on my aortic valve. One cardioligist recommends surgery, a second opinion says take an aspirin a day and come back in 3 months.

If it is enevitable(sp) that you have to have surgery sooner than later why not just get it over with.

 

[Georgia]

Suggest you get a surgeon - cardiologists are notoriously conservative re: surgery. You have a mechanical problem and need a good mechanic to correct it.

 

[rbl1999]

I agree with Georgia, the cardiologists tend to wait, the surgeons don't... I would make an appointment with a surgeon Rose

 

[Curtsmum]

I only wish i new, the reason i think we are waiting is beacause my son is so young. They wanted to replace his when he gets to 13. On the last check up which was march, we was told that it needs replacing within the next twelve months. We should have gone back in september and then they changed that to november. So i really dont know whats going on yet. I just wish we could get it over before any serious damage accures. Anyway best of luck, hope you get things sorted out. Paula x

 

[jkn2kids]

I agree Randy!! I'm in the same boat.You have to educate yourself about your problem and then consult a qualified surgeon.The people on this site are as knowledgeable or more so than many surgeons.Ask all the questions you want here and I'm sure someone will have the answers.

 

[RandyL]

Thanks everyone. I hate having my problem but I love this site.
BTW what is an ascending aortic aneurysm?

 

[PJmomrunner]

The aorta is the body's biggest artery and it attaches to the heart at the aortic valve. It is shaped like a snorkel, going up (ascending) after it leaves the heart, arching (the aortic arch) and then down (descending). An ascending aortic aneurysm is a weakened part of the ascending aorta that has dialated to 1.5 times its normal size or 4.0cm (depending on who's definition you use). Check this out for more info: http://www.bicuspidfoundation.com/Aortic_Aneurysm_and_Dissection.html

 

[epstns]

It's a numbers game. . .

It's a numbers game. . .

Randy,
I'm out here in The Waiting Room with aortic stenosis that is inevitably progressing. This may sound cold, but the general statistical model the doc's are using to treat us is the comparison of our odds of death as we are (without surgery) and the odds of dying on the table. In other words, they have a large volume of statistical data that tells them that patients with aortic stenosis who have not shown any of the "cardinal" symptoms (shortness of breath, fainting, angina) have a certain percentage likelihood of sudden death. Before the onset of symptoms, that percentage is lower than the percentage of patients who die during or immediately after surgery, so they conclude that our lives are safer rught now without surgery. When we begin to present symptoms or when our echo readings progress past a certain point, then the scales tip and we are less likely to die in surgery than in normal life. As I said, it sounds cold and calculating, but once you've accepted the logic, it makes sense. Some doc's have lower "surgical" thresholds than others, though.

 

[TomS]

Randy,
Seem like everyone has their own tolerance with what they can live with. I was in a similar boat and decided to wait. I saw two surgeons and three or four cardiologists and weighed their opinions. One of my prime cardiologists (Jeffrey Borer- NYC, who's written books on valvular heart disease) told me that the time to replace the valve is when there are changes about to, or currently taking place in the functioning of the heart. My preference was to wait until that happened. The other numbers on your heart's functioning are therefore also very important to consider.
Anyway, I tracked it from 1999 until this year. In May we started to see some mild enlargement of the LV and I had some early symptoms for the first time. The operation was in August and all is OK. I would have done it this way if I needed to do it again, although I realize that many people "just want it fixed".
Good luck in your decision process.
Tom

 

[Marguerite53]

Hello

Hello

Hello, Randy. I am beginning my 3rd year, now, in the Waiting Room, AS detected in 2003. I'm 52 and have known about my BAV for about 25 years. No stenosis until recently. Since it is technically elective surgery, it is very frustrating having someone else manage your waiting time! I'm still uncomfortable with my cardio's opinion that I am "way too healthy" for replacement surgery. However, she is using blood pressure management to keep the valve from worsening. So far, it is working and she claims my numbers have actually improved and I'm stable. I still have 8 years to go under Al's "under 60" statistic so for now I'm being a patient patient. Getting 3 children off to college was tantamount to my patience. They are now gone and I am finding myself strangely more calm and accepting of the wait.

That said, I am currently on an event monitor because my PVC's (premature ventricular um, ? blonde moment) (ah! contractions) were resurfacing with a vengeance and we are investigating that, readjusting meds, and I'll revisit with her in a few weeks.

My valve is at .9. Last reading .95, before that 1.0. This is not a significant change, so they say. My cardio calls in the surgeon at .75 (I asked her outright, when?!). Because the echo is not always accurate (as some of our members will attest) I'm very talkative with her about my symptoms.

In the longrun, I think you have to explore your possibilties to the best of your knowledge, find someone whom you can have utmost faith in, and then play their game. If not, then take the reins yourself, visit a surgeon and manage your own event. At any rate, follow your instincts. And be your own best advocate. Don't be shy!

GOod luck and keep us posted

Marguerite

 

[BDMc]

Randy, My experience was that the second cardiologist wanted me to wait, take Lopressor(?) to lower my blood pressure, possibly go on disability insurance. My surgeon wanted to cut. I had an aortic aneurysm to complicate matters, and didn't like waiting with the threat of rupture, or the lethargy of Lopressor. I chose the surgery. My heart had already doubled in size trying to compensate for the regurgitation, and the surg. said he could see the blood thru the remaining wall of my aorta. I had a good recovery, and have remained pretty active for 21 years now. On the other hand, my valve was recalled just as I ws going back to work! The one reason I'd vote for sooner, rather than later, would be bettering your chances because you're in better health. I guess that's something we each have to evaluate with our doctors. Best of luck, Brian

 

[aussigal]

I am in "the waiting room" too
... I dont like the rollercoaster-ride that is here either .

My Cardioligist says he wont send me to a surgeon yet because they would just send me back to him ...well I would like to give the surgeon a look at me anyway...so I pushed on further and have another appointment with a different cardio. in 2 days-time ...

In the mean-time I am arming myself with knowledge so I can discuss my predicament with them and to try understand their reasonings behind their decision/s to wait ...this is uppermost in my mind ...

"i dont think its time yet or its not big/bad enuf yet or its a very serious operation" WHY?
Is not enough information for me...I want to know why he doesnt think its time yet and what experiences have brought him to that conclusion. I want to know that he has included all the family history into his decision... need to write a big-long-list and write down the answers to the questions as I go.

These are the things I am doing to get myself out off the rollercoaster

 

[BDMc]

Annie, I think you are doing the right thing getting another opinion. I also think your aproach of asking for facts and figures is very good! Sticking to the facts is a great way to help cope with both our own emotions, and the issue at hand, your heart. Stick to your guns, focus on the facts, and don't settle for care you're not convinced is going to meet your needs. Best of luck! Brian

 

[BAV Pt's daughter]

Mom's cardiologist also wanted to wait, but every surgeon that we had review her films/records suggested going ahead because of the risk she had related to her aneurysm. I am so glad we did. Why wait and run the risk of such a potentially deadly rupture? The cardiologist was ok with waiting 6-12 months to rescan her with a CT, though.

 

[Dennis S]

The Odds

The Odds

Randy,
I'm out here in The Waiting Room with aortic stenosis that is inevitably progressing. This may sound cold, but the general statistical model the doc's are using to treat us is the comparison of our odds of death as we are (without surgery) and the odds of dying on the table. In other words, they have a large volume of statistical data that tells them that patients with aortic stenosis who have not shown any of the "cardinal" symptoms (shortness of breath, fainting, angina) have a certain percentage likelihood of sudden death. Before the onset of symptoms, that percentage is lower than the percentage of patients who die during or immediately after surgery, so they conclude that our lives are safer rught now without surgery.

I have one problem with that type of analysis. For most of us the odds of an early death without the surgery are very high. If I know the odds of living another 10 years without the surgery are practically nil, I want the surgery early, while I am stronger, and before damage to the heart becomes permanent. When I was told to wait for surgey even though the same cardiologist was restricting my lifestyle and prescribing pills so I could get by I fired him and contacted my choice for a surgeon. Where the the only way to beat the surgery is to die in the next couple of years, I say bring on the surgery.

 

[RandyL]

Thanks so much for all your kind words and recommendations. As I said before the first cardioligist recommended surgery since my echo was .8 I went for a second opinion and tha t Doctor said to wait and come back and see him in 3 months. This whole thing has got me way to nervous especially since I stopped smoking 5 weeks ago which makes it even worse.lol.
(I think I will make an appointment to see the first cardioligist again and maybe do another echo to helpl me make my decision. Over the weekend I was working in the yard and had a major pain in my chest and a quick shortness of breath and a little dizzy. It only lasted for a couple of minutes.Was wondering if that how it feels from some of you that may have experienced any problems before.

BTW My chest also feels pressure everytime I get on this site.lol

 

[epstns]

In response to Dennis. . .

In response to Dennis. . .

Dennis, my "statistics" model is that of the classical cardiologist. He looks at the research statistics and sees that as long as the cardinal symptoms of shortness of breath, fainting and chest pain are not present, the patient's likelihood of death from the stenotic valve is, in fact, quite low. It is only with the onset of clinical symptoms that the tables begin to turn. Thus, if the patient has minimal to no symptoms, the cardio will ordinarily wait for surgery until either symptoms present themselves or an echo indicates that the heart is no longer able to compensate for the restriction. If there is thickening of the ventricular wall (muscle) or enlargement of the ventricle beyond the normal range, or if there is restriction of the valve opening beyond a certain point, then the cardio will make the call for a surgical consult. The cardio is not looking at ten years out to make today's decision -- he is simply looking at the "here and now." The next time he examines the patient he will go through the process again, given the patient's then-current situation.

 

[Curtsmum]

Thanks so much for all your kind words and recommendations. As I said before the first cardioligist recommended surgery since my echo was .8 I went for a second opinion and tha t Doctor said to wait and come back and see him in 3 months. This whole thing has got me way to nervous especially since I stopped smoking 5 weeks ago which makes it even worse.lol.
(I think I will make an appointment to see the first cardioligist again and maybe do another echo to helpl me make my decision. Over the weekend I was working in the yard and had a major pain in my chest and a quick shortness of breath and a little dizzy. It only lasted for a couple of minutes.Was wondering if that how it feels from some of you that may have experienced any problems before.

BTW My chest also feels pressure everytime I get on this site.lol

Thinking back, when i asked the consultant about Curtis, i was told, if they had any concerns, they would be asking him to come back in three months not six. It sounds like your ready to me.

 

[parker04]

Another thought

Another thought

I learned that when dealing with aortic stenosis the valve area is not necessarly what determines how bad it is. The Docs look at the mean pressure gradiant. The blood flow across the valve. Also if you are having any symptoms.