Chest discomfort laying on back?

[davidwattsjr]

I've got "moderately severe" aortic regurgitation. I see my Cardiologist every six months for serial echo's. Each echo has shown an increase in the left ventricular end diastolic dimension (size of the left ventricle keeps going up in response to the regurgitation).

I have a relatively new symptom. When I lay on my back in either a recliner or bed I have a little bit of chest discomfort. Its not pain really - just a bit of pressure. I'll usually need to move to my side - and then it is gone immediately.

Ideas?

Anybody have similar experiences?

Thanks,

David.

 

[Ross]

Silly question. Why are they waiting to do something? If it's enlarging, they need to be taking action.

 

[davidwattsjr]

answer

answer

local cardiologist says its not time yet... at least that's what he said about 5 months ago. Am changing to a doc in Houston. Dr. James T. Willerson. Medical director of the Texas Heart Institute. We'll see what he says.

David.

 

[ALCapshaw2]

Hello David,

Cardiologists seem to like to postpone surgery as long as possible. The problem with this approach is that PERMANENT DAMAGE can result as the heart enlarges.

My recommendation is to get another opinion, preferably from a HEART SURGEON. They prefer to operate BEFORE there is permanent damage to the heart muscles and walls, with good reason.

Several of our members have been told by their surgeons that they got there 'just in time' and that their hearts / valves were in MUCH WORSE shape than the echo's seemed to indicate.

'AL'

 

[tobagotwo]

Angina

Angina

Well, if you last saw the cadiologist five months ago, it sounds like you're almost due for your next echo anyway, so I guess you'll have some answers soon. I wouldn't wait to make the appointment. Even if your heart is not the culprit, it's knowledge worth having, to reduce worry and concern.

Bear in mind that valve issues do not usually follow a linear progression, as they tend to deteriorate more rapidly as they go along: "the worse it gets, the faster it gets worse." So, the change may be somewhat more dramatic this time than the last.

If you're experiencing increases in SOB (shortness of breath), fatigue level, angina, noticeable arrhythmias, or general chest/heart noise, those can help as rough, personal gauges as to your heart's condition. Compare them to how you remember things being months or a year ago, as your unique history is your own best gauge.

Many people have angina and don't realize it. The classic is the left arm, left shoulder/back, or left side of chest pain. However, it can also show up as a feeling at the top of your lungs like you've been breathing cold air, or a feeling like a lump in your throat. It can show up solely in your back, or be confused with heartburn issues. Or you can feel it as neck or jaw pain (this is especially common in women).

It may well show up when walking uphill or up stairs, although not necessarily every time you do it. It's often not the dramatic, agonizing pain that is portrayed on TV shows, but more of a lower level discomfort or an uncomfortable tightness.

Of course, what you're experiencing when you lay on your back could also be some form of dyspepsia, or a hiatal hernia, for that matter. One of the difficulties of having heart issues is a predisposition to ascribe every new discomfort to your mischievious valves.

I hope this turns out to be just a minor glitch for you.

Best wishes,

 

[Shine_on_Syd]

David,
I had severe aortic for two years and my LV gradually enlarged. Pain is not normally a symptom to be on the alert for... its the classic shortness of breath, edema, etc. A month before surgery I developed pain and the surgeon said that is unusual. His theory was that I was so stressed out about my work and surgery that my regurgitation was keeping my blood from being pumped fast enough and causing the pain.

 

[danielgilboa]

If you have any indications surgery might be close, you should go for a second opinion and try to speak to a cardio and a surgeon at the decision making stage.

There are 2 approaches to surgery timing. One, which is considered the "older" fasion says to wait until symptoms are realy bad before surgery, or - don't touch as long as it works. The second approach which is getting more popular looks at some of the damages of regurgitation/stenosis as irreversible. Also, they think that the better the heart is functioning before intervention, it will hold out better in the long run. I think the members here would agree that the healthier you go in to surgery the better chances you have for easy recovery. I never looked up studies to support either approach, they are probably there, but if you have a good cardio and surgeon who also talk (before they cut...) they can explain to you where you stand between these approaches.

If you are feeling suspicious of your condition why not get a quick appointment?

Take care,

Daniel

 

[tobagotwo]

Actually, Daniel, my guess is that there aren't any really good studies about the two approaches. There should be, though. The cardio and surgeon just take an educated guess as to when that turning point is, right now. Anyone who is really interested could probably make an educated guess from reading a large volume of postings for surgical results.

I lean to a little sooner, rather than later, as I have read posts from a number of cases, including Raverlaw's (I'm pretty sure it was Bill's, anyway) and mine, where the valve was definitely worse than even the catheterizations indicated.

It might be interesting to try to set up a spreadsheet approach to cataloging the differences in surgical results with different types of surgery and different starting points. It would take quite a while, but we might start to amass some real data.

It would be tough to standardize the responses and set up the initial criteria columns. Still, if we could find a reasonable scope for it...

 

[Mary]

Good thought Bob.
There would be a tremenous amount of variables involved.
Mary

 

[davidwattsjr]

interesting thoughts

interesting thoughts

To the group:

many interesting and useful thoughts here. I especially appreciate the perspective on the difference in approach... wait until surgery is required vs. have the surgery when you are healthier and strong. I'll certainly talk to this new cardiologist at the Texas Heart Institute and see what his perspective is.

Sincerely,

David.

 

[Shine_on_Syd]

David,
As I said I had severe regurgitation too and was on the 6 month echo watch. My cardiologist seemed to focus on two main factors, the LV dilation and EF. Late December 2002 my LV was 7.0 cm and the LV walls started to get thicker. My EF was okay. My eminent Boston cardiologist said "looks like 2003 will be your year." He said 7.0 cm was starting to push it. But..... was going to wait another 6 months for an echo unless I had symptoms.I agree with comments here it seems many cardios want to wait to push back a second surgery, I heard that over and over, I started to distrust my cardiologist as my PCP said I should be talking to surgeons and the cardiologist said not yet.That sent up a red flag, I agree with comments here it seems many cardios want to wait to push back initial AVR to delay a second surgery If you are on the verge go for it...when you are within a few months its not worth the risk of delay.
So I said I said frig this.
I took the echo tape to Dr. Stelzer in NY early in February and he said that based on what he saw that I shouldn't wait more than 3 months. He couldn't guarantee anyting past that, I had my surgery in April because my wife had a week off of school. I am so glad I didn't wait any longer. Then I had a big disagreement with the my now former Boston cardiologist on the Ross procedure. I am on my 4th cardiologist and only moderately sarisfied with him. I still call the surgeon with any issues.
Bob is right, it is not a linear progression. You need to really try to pinpint the righttime. I started to go down hill fast near the end. The weeks preceding surgery the company nurse kept saying that I looked like the walking dead I was pale, I waa tired, and said "what are you doing here - go home and go to bed"
If I were in your shoes, I would be talking to surgeons and get another cardio's opinion. Once you cross that line to congestive heart failure there is NO turning back. IMHO better to be on the conservative side.
best of luck and keep us posted.

 

[davidwattsjr]

symptoms?

symptoms?

James,

thanks for the excellent thoughts. I have a hard time figuring out whether my symptoms are significant symptoms - or just every day life.

Quite fatigued in the mornings. Being outside in the heat just seems to wipe me out big time. Didn't seem to be that bad in the past. My Left Ventricular dimension at last reading was about 6.4cm. But it has been going up about .4 or .5 every six months.

Certainly aware of a poundning pulse - if things are quiet. But I still seem to tolerate exercise pretty good....

Shortness of breath seems to be real - but then again, its hard to say. Is it just the fact that I'm not very physical and am not in great shape?

Many questions - appreciate your perspectives. Will talk to the Cardio soon and perhaps the surgeon.

David.

 

[JAMES W]

David,

I am 18 months post AVR. I echo the earlier advices about getting the surgery done sooner than later. When the red flags started going up ie. SOB, palpatations...strange chest feelings..I sought the advice of my PCP, Cardio & Surgeon. Having had rheumatic fever as a child, I've known for 40 yrs that I may someday need a "valve job." Listen to your body. It is telling you something..."Stop..Something is wrong here." I can't imagine having the surgery and being in a crisis situation. Recovery is so much easier when you have it while you are still able to manuever on your own. I was back to work half days 3 weeks post surgery. Wow....Though now, I admit it was too early. 2003 was a bad year for me with AVR the end of January and then a gall bladder removal in August. I think I am now at 95% of my former self, with hopefully many anniversaries to come! Everyday is a gift and I no longer take life for granted...Be safe my friend....

 

[ALCapshaw2]

Hello again David,

Your symptoms sound VERY significant to me, as well as your numbers. IMHO, it's time to be searching for and scheduling an interview with a Cardiac Surgeon. Keep the appointment with the new Cardiologist because he will be a oart if your life for a long time now.

One of our young active and fit members (Scott something) went from no enlargement to very significant enlargement in SIX WEEKS. It impacted his recovery and limited his post-op capacity. It was not clear if this was going to be a permanent reduction in ability or not as of my last reading. It's just not worth the risk of waiting a few more weeks or months when you KNOW you will need to have your valve replaced.

I KNOW it's scary to face OHS (been there, done that, twice). When you become more afraid NOT to get fixed, the surgery begins to look pretty good!

'AL' (CABG and AVR survivor)

 

[KimC]

Hi,

I'm going to play devil's advocate here and welcome a healthy debate.

The decision-making behind an AVR is extremely complex, and depends on multiple factors which are completely based on the individual. Pathology is not black and white. Seeking multiple opinions can help you make the difficult decision of whether or not to pursue interventions such as medications or surgery.

I'm only 37, have low BP and am under six-month monitoring for AI. I experience chest pressure that travels from the center of my chest into my jaw. A recent cath w/ ergonovine triggered a severe episode, confirmed by the elevated pressures on the monitor (and my own experience). They could not find the definitive cause in my arteries, and speculated that it could've been a transient spasm, or something GI-related. Apparently, it's rare to have angina from a leaking aortic valve unless the leak is severe.

Because I have no clinical evidence of heart failure or severe disease, I was told to take a calcium channel blocker to treat symptoms and that surgery is a remote possibility at this time. (VR.com has rights to kick me out! But I hope y'all will put up with me).

Given how young I am, and that most people only survive one OHS, I'm OK with that but have some concerns ... my LV is mildly dilated which COULD be a result of conditioning -- I was a runner for years and years.

Only time will tell if I made the right choice. (BTW, I've had three opinions, but only two of which I really trust ... long story).

Best,

 

[ALCapshaw2]

Kim,

I STRONGLY DISAGREE with your statement that "most people only survive one OHS".

I've had Bypass and AVR and am still above ground. We have several members who have survived 2 surgeries and one (Debra from Brazil) who has survived 3 or 4.

You seem to be more afraid of the surgery than your current symptoms. When your symptoms become severe I suspect your views will change. Hopefully, your doctors will be able to determine the root cause of your difficulties. If / when your valve becomes more symptomatic, I hope that you don't pospone surgery until you have suffered irreversible damage to your heart.

'AL'

 

[tobagotwo]

Given how young I am, and that most people only survive one OHS, I'm OK with that but have some concerns ...

Simply not so, Kim, unless I am misunderstanding your statement.

The odds on reoperation average better than first operations, and it can't be because of age, as you would have to be older to have a reoperation. Source: http://www.valvereplacement.com/forums/showthread.php?t=7339 .

A quote from the study article: "Results: Multiple logistic regression analysis indicated that factors of reoperation and redo operation did not predict mortality. In fact, the mortality rate was 4.1% for all first AVR operations and 3.1% for all reoperation AVR ( P =.891)." The study included 1,213 sequential (unselected) AVR recipients.

For those who are not familiar with the generic odds of AVR surgery, they are skewed, due to the fact that many of us are in our later years, or have multiple concurrent major health issues. For an average person under sixty years old, with no other existing major health problems, odds for surviving simple aortic valve surgery in a high-volume facility are usually placed by the surgeon at 99%.

David, you have moderate-to-severe AR, which I would suspect may also have some AI associated with it. As you know, that is a challenge for the heart, inthat it has to work harder to pump blood to itself and the brain in sufficient quantities. This causes enlargement, and has a greater likelihood of producing long-term damage to the heart. I still opine that watching for personal signs (including increasing angina, if you have it [, Kim and James ]), getting rather frequent echoes, and a second opinion are important to determining an appropriate "when."

Fortunately for us all, diversity of opinion is a strong suit of valvereplacement.com. It rallies discussion, and it gives us fodder to synthesize our own decisions on more confident ground. Adult, reasonable, and polite debate also gives us an opportunity to use the sticking-out-the-tongue Smilie, which would otherwise likely languish unused.

I wish you good fortune with your upcoming decisions, David.

Kim: Kick you out? Hah! Since you have so long to go, I think we should suggest to Hank that you should be put in charge of some aspect of the Waiting Room...

Best wishes,

 

[ALCapshaw2]

Here's another perspective from a mother whose daughter underwent a successful Valve REPAIR after being advised by several cardiologists to "wait" which would have resulted in REPLACEMENT and Heart Damage if she had not been so persistent in searching for and finding a surgeon who believed he could (and did) repair her failing valve while she was still young and healthy.

'AL'



I don't know if you all remember me. I came to this forum in January after my 33 yr. old daughter was told she'd probably need a valve replacement in 20 years. If you rremember my name is bobbie and I was in a panic.

I'd love to share these last months with you. I spent about 2 weeks glued to the computer- and got a wealth a information from you all. Then I went to work, as any good obsessed, worried mom does, and starterd investigating everything I could.

In the meantime daughter decides to get another cardio's opinion and an echo. Now we have progressed in a year from Moderate regurgitation to Mod-severe. But this Dr. too just seemed to blow her off- saying she was young yet and could wait.

I had been collecting a folder for her- and gave it to her to look at. All the young people from here who had repairs etc. done when they were healthy- all the data I had researched seemd to indicate doing this early while the heart was healthy. She was terrified but decided to take control of her health and went to a major surgeon for an opinion. Had her first TEE done. It showed her heart was enlarging ( something I read here told me that was a sign to do something) and she was very symptomatic- had been for so many years- but taking meds for anxiety.Hard breathing laying in bed- tired-out of breath- heart pounding etc. just feeling lousy for so long.

This Dr. said the problem was the anteriel leaflet(sp.?) and would be difficult to repair. He gave her 80-20 odds he could repair it. Next visit- he says now - why don't we just monitor it every 3 months etc. We were so confused. I felt he probably felt he couldn't do the repair and would rather see her wait for a few years-then he would replace it. This did not sit well with us. I suggested she might well get another opinion or as many as she could. There must be someone out there who could do this repair.

Well she started doing her homework and called me a few hours later. Seems she'd reached a top surgeon at NYU. Happens he was in the office and got on the phone. She was thrilled. He spoke to her for about a half hour- going over whatever info she had on hand. She loved his manner- his caring- it just felt right. From what she told him on the phone he said "Anterier leaflet problem? We do that all the time. About 2000 MV surgeries yearly and he had done this one many times with success. . He gave her 98% odds he could repair it.

He got her to see him within a few days and within a week after meeting her- she was in surgery! I have been worried for 6 months and now it was here. I knew how much she wanted this repair not a replacement at her age. I was on my knees in prayer- for her safety and for God to grant her this.

Well- she has had her surgery- June 7th and had her REPAIR!! She is recovering so fast we can't believe it. A few days after, she was out at the mall and visiting her sisters.

My heart is overflowing with gratitude to my God- and to the hands he guided to do this for her. She now has so much to look forward to with her 3 and 2 year old children~a healthy mom.

Just wanted to share my happiness with you all. She probably will be writing here too..

God bless you all. I still can't believe it's over. Dr. said our instincts were right.She was symptomatic, had heart enlargement etc. and that's when he believed you do this- when you are young and strong and don't have bad heart damage.He said she could have chosen to wait- but would have had the heart of an 80 year old woman.

We're off to see him Tues. for her post op visit ~I can't wait to give him another big hug.

blessings,
bobbie

 

[ALCapshaw2]

OK, last testimonial, I promise.

David, this one should be of interest to you.

'AL'

--------------------------------------
*so* *irritated!* (by Scott Vant)
--------------------------------------

So, not to keep harping on this or anything, but: To anyone busting their head about when to operate/not to operate/operate before the holidays/wait until spring/I get a new job/the kid gets a little older/I retire or WHATEVER...

To briefly recap my situation for those who don't know--about a year ago I started to get sick. Day after Thanksgiving, diagnosis is bicuspid aortic valve (until then, undiagnosed) with 4+ regurg and active endocarditis. Previous history--no heart trouble, active bodybuilder with weekend forays into long bike rides and skydiving. Healthy resting pulse, 100% asymptomatic--no breathlessness, no swelling, absolutely no indication of heart trouble whatsoever. Doctor assumes my BAV was either not leaking or only VERY MILDLY stenotic, if at all.

In other words, valve was leaking for at most, 6 weeks, as far as they can tell... Granted, quite severely by the time of my operation, but still.

WHAT I'M SO IRRITATED about:

Met again this week with cardiologist. Two months post-op, he finally tells me about my enlarged LV/LVH/whatever. At that Two-month mark, he says, "no weightlifting for six months, ride your bike all you want, go ahead and train for that 585-mile AIDS Ride next summer. Four months post-op, I go on Coreg, cos pulse rate is not going down on as a result of monitored cardiac rehab alone. Most recent consult (yesterday, ~10 months post-op), word is--nix on weightlifting of any kind until directed otherwise, nix on the 585-mile bike ride until Summer 2005 (if at all), pretty much moderate exercise only until directed otherwise.

In other words, heart conditions developed during those SIX WEEKS (only!) of leaking are, at the moment, showing less-than-encouraging signs of regressing, if at all. The road to Wellville is a long one, apparently.

I do realize of course that there are people with tougher rows to hoe than me and with more conditions to overcome and any number of complications I could be considering but am not. I guess I'm having a real problem dealing with the fact that a year ago, I was a perfectly healthy 34 year old athlete and now, I'm a heart patient on blood pressure pills, told really not to go back to the gym (I mentioned I might not be able to resist the siren call of the weight room if I went back to a gym to do cardio workouts and it was suggested I work out at home instead--a depressing, make-me-feel-like-an-invalid suggestion if ever there was one...)

Oooh, yuck. That sounded like a pity party. Not intentional. But what the hell--I wrote it, I'll leave it.

My point being, in hindsight, if I'd have had even a few weeks of notice what was going on, I'd have gone under the knife at the first sign of trouble and spared myself what looks like is going to be a nice, long, slow recovery, nursing a damaged heart muscle back to health.

Scott, be careful people--it's a jungle [in] there.

(PS--is a dilated aortic root different than an aortic aneurism? My aortic root is 4.3--that sounds bad... Is it?)

(Scott Vant)
__________________
Ross Procedure, 12/16/02

 

[Mary]

Kim,
You say that there is a remote possibility of surgery. Although I was diagnosed with my bicuspid aortic valve in 2001, I have always been told by the cardiologists that I would have surgery.
If I remember correctly, the visit to CC wasn't conclusive but did tend to put to rest some of your concerns dealing with your heart. If it were me, I believe I would try to eliminate the other possibilities first and then see where that left me.

Sorry, David, I think your thread is in danger of being highjacked! David I finally did contact a surgeon (on my own) and he reviewed my echo and l/r heart cath. He gave me surgery time parameters for which I am extremely grateful.He said we could hurry up and do it now or wait as along as 9-10 months. I suggest you try to see a surgeon and relate your symptons to him.
Mary