How common is chest pain for valve problems?

[oscarsonthepond]

My wife has had nearly-constant chest pain for the past year. She has severe pulmonary regurgitation and has an enlarged RV as a result (no other heart problems). By far her main symptom (in that it has affected our lives the most) has been the chest pain, but she is also fatigued, can't sleep, and seems to have shortness of breath. Our cardiologist says that it is possible that her pain is being caused by her heart problem, but he can't really explain why it would cause that. She's had a million other tests for essentially every other kind of thing that can cause chest pain, including a recent CT scan (one of many) in which the doctor combed over it "with a fine-tooth comb" and couldn't find a single thing wrong except for the regurgitation. She did have OHS as an infant so I supposed it's possible that it's scar tissue or something, but that seems highly unlikely (the pain is always on her left side, not where the scar is in the middle). The only option we haven't thoroughly explored is anxiety, but although she has certainly had anxiety in the past over her semi-undiagnosed problems, she is definitely in control of things now, and is almost always calm and collected about things....plus the doctors think it's unlikely that anxiety would cause chest pain that is basically always there for a year.

So my questions are: How many of you had chest pain? Did anybody experience it as a constant pressure on the left side of the chest the flares up at times (for her it's at night, when exercising, and when sitting in the car for long rides)? Does anybody know an explanation of why her condition would cause this chest pain? Is it likely to go away after surgery? Some websites mention it as a symptom (e.g. Mayo Clinic), but it's not talked about all that much.

Part of the reason I ask is because we just asked our cardio if he would have the surgery if he was in her shoes, and he said we'll know a lot more after the upcoming cath, but that he's not sure one way or the other. He said he's not big on having surgery to fix pain unless you know for sure that it will (e.g. she's going to have a ton of extra pain from the surgery and there's a good chance it won't fix her current pain). We're pretty sure we'd have the surgery even if we knew the pain was unrelated, but it would of course be nice to think that there's at least a good chance it will go away.

Thanks in advance for any responses.

 

[ALCapshaw2]

I think we would need more information to properly answer your questions.

Things like 'what kind of pain is she feeling'? and where exactly?

Her heart symptoms sound like surgery may be warranted, but what exactly is being proposed?

Yes, the cath results should hopefully shed some light on the situation.

'AL Capshaw'

 

[oscarsonthepond]

She describes it as a 'pressure' and it's on the left side of her chest. Also, no pain killer seems to help....the only thing I can think of that seems to help is taking a hot bath, but even that I don't know if it actually relieves the pain so much as it just helps her to relax and get her mind off of it. Like I said, we'll likely have the surgery regardless but it would be nice to know if some people have had a similar symptom. I know I've seen people mention chest pain. Those who have - what was it like and where was it?

 

[aussiemember]

Hi Oscars,

I have mitral valve prolapse with mod/severe regurgitation and I have always had a lot of chest pain. It is on the left side of my chest in the heart area and is a sharp continuous pain. (when it occurs). I have had it for the last 10 years and sometimes it is severe enough that it will keep me awake at night. I don't get any other symptoms with it and it doesn't happens when I'm exercising. It sometimes goes away for a few weeks and then returns all of a sudden and can last for hours on end. Over the years I have probably been to the ER about 5 times with it where they diligently check me over, do all the blood tests etc. and find no cause. I also have had numerous tests - stress tests, halter monitors, event monitors and nothing ever shows up. My cardiologist isn't concerned as he says that as long as it is not associated with exercise then it is a not uncommon symptom of MVP. Indigestion has been ruled out as a cause by other specialists. Perhaps your wife's pain is of a similiar nature? I remember someone else on the forum whose wife had similiar pain and had every test under the sun but no cause was ever found.

P.S. It has got neither any worse or better over the years.

 

[ruth]

Welcome. So sorry to hear of your wife's troubles.

I am going in for surgery in 2 days. I have been symptomatic for my valve regurg since roughly October esp. with regard to shortness of breath.

Here's what has me wondering, akin to your wife's situation. I have pain in my left shoulder that radiates down my arm when I overexert myself. Now, "overexerting" myself these days isn't much mind you but take it for what it is. The heart websites say that "chest pain" in women can also be left shoulder/back pain. I totally suspect that my shoulder pain is valve related. I'll know for sure soon

At the same time as the shoulder pain I get a slightly painful but more like an almost swollen feeling in my neck on the left side, near where one would take their pulse. After resting up the shoulder and neck troubles subside. I sure hope they go away post surgery recovery. I won't know for quite a while yet but maybe others here have had these experiences and can share them.

My father had several heart attacks many years ago and the interesting thing to me was that it was not always exercise related. The night my brother said he was divorcing his wife (who my father loved like his own daughter) he had a heart attack. He would go shovel 30 inches of snow and we would all warn him and he'd be fine. Makes me contemplate the mind/body connection. I only raise this so we will also consider psychological stress in addition to physical stress.

All the best to you and your wife.

Best Regards,
Ruth

 

[tobagotwo]

Your wife has an enlarged right ventricle, severe pulmonary regurgitation, prior heart surgery, and has had heart issues for most of her life. She gets chest pain while exercising. Why would a doctor so intensely question her angina pain?

My response would be two things:

1) It has been determined that many doctors fail to acknowledge pain in women, due to a misguided feeling that they tend to complain too easily or develop "hysterical" pain. I would get another opinion from someone outside the current cardiological group. Be absolutely sure this isn't a "female hysteria" call being made by the doctor, even unintentionally.

2) Women tend to develop cholesterol clogging in the smaller arteries, rather than the more easily viewed main cadiac arteries. As such, their large arteries can be declared clear and healthy while the walls of smaller feeder vessels develop dangerous buildups that can lead to a heart attack. This could be a second, hidden cause for angina. A typical cardiac catheterization wouldn't show that, although an MRA can. A Magnetic Resonance Angiogram is an MRI done to illuminate the heart and its blood vessels.

Best wishes,

 

[oscarsonthepond]

Thank you everybody for the awesome responses!

Aussie - that sounds very similar in a lot of respects to what my wife has. Exactly what I was looking for - thanks!

The heart websites say that "chest pain" in women can also be left shoulder/back pain.

Ruth - good luck on your surgery! If you have spare time beforehand to send me a link to such a website, I would sincerely appreciate it (obviously I'd understand if you don't). I failed to mention that my wife also has back pain in the same spot on her left side. We have begun assuming it was unrelated because I've never found anything that listed it as a symptom. Thanks!

tobagotwo - thanks for the great info (as always), and for the great response in my other thread as well. I would like to think that the female hysteria thing does not apply, as our Cardio is our favorite of the dozens (literally) of doctors we've seen over the past year. I may have been misleading in the way I represented his statements - I think he is just trying to make clear to us that he can't gaurantee that this will have any affect on her pain. Like you put it in your first paragraph, though, it seems sort of obvious! As for the clogging issue - I didn't mention that she's only 23 years old - do you think it's possible that that would be occurring so early? Her dad did die of a heart attack in his mid-40s, and my wife is a bit overweight but she eats pretty healthy and has for most of her life.

 

[ruth]

Take a look at the American Heart Association www.americanheart.org and the National Heart Lung and Blood Institute (NHLBI) an Institute of the National Institutes of Health (NIH) http://www.nhlbi.nih.gov/health/public/heart/index.htm , look well down the page for the heart information specific to women.

Google "women heart shoulder pain" and you will find a host of links as well. Shoulder, jaw, neck and back pain are some of the red flags as I understand it.

My mother had bypass surgery in the 1980's before a lot of gender differences in heart symptoms were well understood. She never had chest pain, my dad, on the other hand certainly did. He also had bypass surgery, only 6 weeks before mom. He had the classic symptoms, mom, to what we knew at the time, was 'asymptomatic'.

The moral of the story is that men & women can be very different in their heart symptoms and it is important to get the latest information specific to women when the person of concern is female.

Thanks for the well wishes, they are very appreciated.

I wish you and your wife all the best,
Ruth

 

[Diane]

Oscarsonthepond,
I am assuming that since your wife had OHS as an infant that she was born with a congenital heart defect. Because you mentioned the pulmonary valve, I am guessing that she has Tetrology of Fallot (TOF). I am also a TOF survivor.

Regular cardiologists are frequently baffled by our unique anatomies. They also do not usually understand the impact of the CHD on our bodies. One of the main concerns later in life after a tetrology repair is the pulmonary valve regurgitation. Many of the TOF repair procedures (especially the earlier ones) left the patient with a non-functioning pulmonary valve. Years down the road the resultant regurgitation causes dilation of the right ventricle. Another concern is the length of the QRS duration on the EKG. Anything above 180 ms. is considered a risk factor for dangerous arrthymias.

At the 32nd Annual Bethesda Conference of the American College of Cardiology, guidelines were set forth for the care of the Adult with a Congenital Heart Defect. It calls for all those with CHD to be evaluated at least once by an ACHD specialist.

I have not experienced the pain that you are describing your wife is having but about 2 years ago, I was diagnosed with Pulmonary Hypertension by my internist and my regular cardiologist. I kind of bumbled into Stanford University completely unaware of what I have just shared with you. I had severe pulmonary regurgitation, a dilated right ventricle, and a QRS duration of 180 ms. I was ultimately referred to Dr. Dan Murphy, their ACHD specialist. It turns out that I did not have PH...I needed to have my pulmonary valve replaced. Since my surgery, my health has stablized, the size of my right ventricle has decreased, and my QRS duration has gone down out of the dangerous range. If I had not been evaluated by Dr. Murphy, I would probably be on oxygen by now!

Before your wife goes through a heart cath or any other testing, I would like to urge her to seek an evaluation with an ACHD specialist ASAP. You mentioned Mayo....I understand that Dr. Carole Warnes is an excellent ACHD specialist at Mayo. There are also around 50 other excellent ACHD specialists at different facilities around the country.

I would also recommend that she visit the Adult Congenital Heart Association (ACHA) website at www.achaheart.org. There you will find more info about CHD, links to the Bethesda guidelines, and a listing of self-described ACHD clinics.

Please feel free to PM me if you have more questions or need more info.

Let us know how you wife is doing and what you find out!

~Diane

 

[oscarsonthepond]

Diane -

Thank you so much for the very informative post! My wife is in fact not a TOF survivor, but rather as an infant only had pulmonary stenosis (which if I remember correctly is just one of the defects in TOF patients). This puts us in an interesting position because I've never heard anybody talk about somebody in her situation so it's hard to find information (most all of the info I can find on PVR after repair is for TOF patients). Needless to say, however, we are fortunate that her problems are limited to what they are.

Anyways...I just looked at her QOS duration from a couple of EKGs over the past few years and they were both 108ms - whew! However, she does have Severe (mild-severe on the latest echo) pulmonary regurgitation, along with a mild right atrial enlargment and mild right ventricle enlargment. We're still trying to figure out the ACHD thing - we really like our current cardio and we're going to get opinions from two surgeons (one who specializes in valve replacement). Perhaps we should still see an ACHD cardio tho....there's one about an hour away who takes our insurance....hmm... Anyways...thanks again for the great post. I'll PM you I can think of anything and congrats on feeling so much better (we're hoping that's what'll happen for her!).

 

[Karen]

Hi Oscarsonthe pond...

We are neighbors! I just PMed you concerning the ACHD clinic in our region. A great resource that might be helpful to your wife.

Good luck!
Karen

 

[CathyK.]

Hello and welcome! I have BAV with regurg and MVP with regurg. That is how I found out that I had these problems. I was having some chest discomfort that just didn't feel right. After a stress test (which was fine) and a visit to a cardiologist whom did an echo, we found the problem. However, my first cardio said that my discomfort was not related the my heart condition. I have switched to a different Cardio (for a number of reasons) and he does not dismiss the idea but doesn't come out and say that it is caused by my condition. I believe it is. It is in my left chest area and comes and goes. I haven't noticed anything in particular that gets it going. It appears to the left of my left breast and alto of times when it is there I have a tendency to grab and hold my left breast. Some times it is more to the right of my left breast, towards the middle of my chest.

I don't know if this helps but since I do experience some chest discomfort I thought I would respond. Good luck to your wife and let her know that she is not alone!

 

[afraidofsurgery]

angina

angina

I remember having a sharp pain right under where I thought my heart would be in my left rib area after strenuous exercise, and some achiness in my chest area the day after exercise. I looked up a lot of information on 'angina' (heart pain) and found that it can often be nonspecific, or 'delocalized - appearing in the back rib area, shoulder, or other areas as a general achy feeling or even as a sharp stabbing sensation.

I would guess your wife knows what it is (trust your gut feeling type of thing). It also seems the mechanics of valve problems are well characterized, but not so much the physical symptoms or limitations (my opinion).

It's also a well known fact that women are vastly underrepresented in clinical studies, so therefore much less is known about any darn disorder. There is a good reason for that since women can get pregnant to a certain age, they are often excluded due to the ethical and technical problems associated with that issue. But things are changing, albeit slowly.

Patty

 

[ruth]

Well, I'm now 6 days post surgury and about the only thing that *doesn't* hurt on me is my shoulder. I suppose this could mean a few things: that I can't yet exert myself to the point of it hurting, that is was a muscle strain that just happened to choose surgery day to go away, perhaps due to some weird yoga-like position that they had me in while under anesthesia., or that the pain was indeed heart related.

I prefer to think it's the latter.

Ruth

 

[oscarsonthepond]

Congrats on what sounds like a very successful surgery - I sincerely hope that your pain goes away for good! Best of luck on your recovery. I'm curious as to what exactly you mean by "side incision"? Was it with a catheter?

 

[ruth]

I don't really know what it's called, someone here must, but I have a horizontal incision (5" or so) below my right breast that was used to go between 2 ribs to get to my mitral valve. I have another smaller incision, where the leg meets the groin area where the bypass pump was hooked up. The sternum was not cut at all. I think the incision is called a "thoracotomy" but I'm not really sure. I don't think it's as common, my surgeon was the primary person for this on their team. It seems the tradeoffs are a longer surgery & more pain right away (it hurts when you breathe, feels like broken ribs yet traditional incisions have sternum pain but I have no way to personally compare) It is cosmetically preferable to some and after about 2 months can be less painful because there are no lingering sternum issues.

 

[oscarsonthepond]

Thanks for the info...very interesting....never heard of such a thing.

 

[LEN]

Hi.i Am Waiting For Aortic Valve Replacement.was Having Increased Shortness Of Breath Over Last Month Or So.chest Pain Uncomfortable At Times.went To Family Doctor A Few Times He Thought I Doing Good .so I Thought I Was Overreacting.one Night Got Sick Went To Hospital After 4hours Were Going To Send Me Home.vital Signs Were Good Even When I Came In.i Said I Would Go Home But Didn't Feel Well.the Doctor In Emergency Said He Wouldn't Send A Sick Person Home Even If It Was Packed.he And Internal Medicine Found A Large Blood Clot In My Left Lung.i Don't Know What Would Have Happened.but After Not Feeling Well For Awell I Feel Better And My Surgery Is Coming Up Soon.is Only My Story.i'm Very Lucky,tell Your Doctor How You Feel.if Your Not Happy With Someting Tell Someone Else.

 

[LEN]

Hi.i Am Waiting For Aortic Valve Replacement.was Having Increased Shortness Of Breath Over Last Month Or So.chest Pain Uncomfortable At Times.went To Family Doctor A Few Times He Thought I Doing Good .so I Thought I Was Overreacting.one Night Got Sick Went To Hospital After 4hours Were Going To Send Me Home.vital Signs Were Good Even When I Came In.i Said I Would Go Home But Didn't Feel Well.the Doctor In Emergency Said He Wouldn't Send A Sick Person Home Even If It Was Packed.he And Internal Medicine Found A Large Blood Clot In My Left Lung.i Don't Know What Would Have Happened.but After Not Feeling Well For Awell I Feel Better And My Surgery Is Coming Up Soon.is Only My Story.i'm Very Lucky,tell Your Doctor How You Feel.if Your Not Happy With Someting Tell Someone Else.

 

[LEN]

Hi Oscars. I Know My Comments Were Off Topic.when I Read Your Story Of Your Wife,i Felt For You Guys.this Site Is A Great Source For My Family.best Of Luck.tell Your Wife To Rest She Deserves It.