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Will the 3rd cardiologist be the charm?

Bo
0 Recommendations

I need advice on how to make a cardiologist listen to me. I will be seeing my 3rd one in 7 years in two more days. I am trying to find research to take with me.

I started having chest pains 17-18 years ago. The pain is also (at times) in my back, and (always) in my jaw and neck. It lasts anywhere from 10 minutes to 3 hours. It never happens when exercising or exerting myself...but always when fairly or completely sedentary. I might have them while grocery shopping or washing dishes or I sometimes have them while watching TV. Many times I have them at any given hour during the night.

All of the stress tests, ekg's, etc. that I've had have been good. I do have an irregular heartbeat that I take a low dose beta blocker for, but my heartbeat is always normal when I have an episode. I tried one of my husbands nitro tablets during a particularly bad one, but it didn't help.

Two years ago I started researching a possible cause because my cardiologist wasn't interested in trying himself. Every path I take while researching leads to Prinzmetals Angina. When I presented the info to my doctor, he all but laughed at me.

The scariest thing for me is that now my 29 year old son is having the same problem. I have no idea if this can be hereditary.

So now, I'm trying another cardiologist. Any suggestions on how to approach this? Should I take any research I have with me? My other cardiologist wouldn't even look at it. Any advice would be appreciated.

Explore topics in this discussion:

Heart disease Surgery Back pain Bypass surgery Beta blockers Anxiety Angina Pain Prednisone Rare diseases Heart attack Stent Xanax Stress

16 replies

WarmNBrace

Welcome and glad you found us. Here you will find a lot of women willing to give you their opinions and here amazing experiences. Every one here has been so good to me and I'm sure you will find the same.

First.... Glad your under cardiac care and have been tested. Thats a good thing. Some people don't listen to the signs. From what you say all the tests came out to be ok.

As far as the NItro.... One tablet under the tongue may not due the trick.. It is supposed to be taken as I've been told... one under the tongue every 5 min. if by the 3rd it is not gone then go to he ER.

I've had two heart attacks..CABG X4 and a total of 9 stents all in the past 7 months.

Mine all started with jaw pain. I also had a father who had a history of heart disease all starting at an early age.

MY thoughts... and My opinion only...Keep following your instincs. Have you ever had a Cath done? for this test is the most acturate and will find something if its there. Problem is... Its hard to find a doct that will run if all your other tests are fine.

Have you ever gone to the ER complaining of chest pain, back pain and jaw pain? Did they run an enzyme blood test? From that test they can see if your having a heart attack.

I also wanted to run this past you..... Anxiety can do a lot to the body and mind !

If you feel your Doctor's are not listening to you then fond another... and another until you find one that will listen and your compfortable with.

You might what to go to the ER the next time you are feeling these pains and make sure you tell them how severe they feel. while I'm not telling you to lie... you can say at the present time you don't have a cardio doct. ( its fibbing .. since your looking for another)
Its sad what some women have to go through to be heard. Having that Cath test would put your mind to more ease... and it's not painful... I had 6 of them and would do it again if i had to.

Hope this was some help. Please keep us posted

Marie

gracie62

Bo:
So many of us on this site can relate to what you are going through. I was diagnosed with coronary artery disease at age 39. I am now 42 and am on my 4th cardiologist. I had to demand a heart cath at 39 due to the severity of my symptoms. ER doctors said it was stress. Cardio doing my cath didn't expect to find anything and then found 98% blockage of the LAD. I got aquainted with my 4th cardio after going to a hospital I had never been to and asking for a doctor from a group I had never seen be called in. Even then with my history (1 more stent and confirmed diagnosis of coronary artery spasms/Prinzmetal's) they called me "the patient there for preventative cardiology". Imagine the surprise in the cath lab when it was discovered I needed emergency triple bypass!

Anyway, Prinzmetal's Angina is listed on the National Institute of Health's list of rare diseases. That is one reason doctors unfamiliar with it are unlikely to pay attention when someone brings it up. Another thing I have noticed is that doctors don't like us bringing in print outs from the internet. They feel like we are trying to tell them what is wrong with us and not let them do their job. A few things that may help you: Prinzmetal's Angina is indeed a rare disorder. It is much more common in females. Coronary artery spasms are the same thing, but I have noticed that calling my condition that gets more of a response than Prinzmetal's. The only thing I can figure is when we use big words they think we are, again, trying to diagnose ourselve. The only 100% way to diagnose coronary artery spasms is through a heart cath. They have to see the spasms happening on the screen to confirm diagnosis. There is a medicine they can introduce during the cath that will cause your arteries to spasm if you are prone to this condition. Coronary artery spasms can and do lead to heart attacks so many of us won't do that test. Mine were seen on several occasions during caths. I had a heart attack 18 days after my bypass surgery caused by a combination of a clot and the new bypass it was in spasming around it.

When you see your new cardio, if you present your research first thing, he may not take what you say seriously. I think sometimes they think when we research, we develop symptoms based on what we read. I would advise telling him your history plain and simply and then casually mention that you have friend who has a relative who has coronary artery spasms (and say "they said it has some complcated name I can't remember") and your symptoms seem to be very similar to theirs'. This brings up the possibility of the diagnosis without giving the impression of diagnosing yourself.

That said, I have noticed that once we are diagnosed, they appreciate us being informed about our conditions and asking questions about treatments and medications. Don't get me wrong - I am the first to kick, scream and demand they listen to me, but only after I have tried it their way. I go in meek and mild and seeking their expertise and help. But if I don't get the testing and treatment that helps me, I move on and find another doctor who will listen.

Best of luck to you with your appointment. Let us know how it goes.

Dianna

Bo

Thanks so much to both of you for taking the time to respond to my post. I feel that God sent me to this website to find people like you.

Reading your experiences was very helpful and makes me even more determined. I have never gone to the ER while in pain or had a cath. Now that the pains are lasting so long, I would have time to get to the hospital. I live in the country.

One last question. Were you able to tell if you were having a heart attack verses angina? Or was something you found out after you went to the hospital?

Thanks again for your help and I will keep you posted.

Darla

gracie62

Darla:
Some people never know they are having a heart attack. It can be tricky to tell the difference between angina and a heart attack. Like Marie said, if you take 3 nitro 5 minutes apart with no relief, it is time to get help. With me, I had just had bypass surgery. When my heart attack hit, there was no doubt. I had had the crushing ,burning chest pain before with angina and even some numbness in my left arm. With my heart attack, I immediately broke into a cold sweat and was drenched in seconds. I started throwing up and didn't stop for 3 days (real fun with my sternum wired together!) I took 1 nitro and the pain got worse. I live in a rural area and didn't wait to call 911. It took them 20 minutes to arrive so it was a good thing I didn't.

Everyone is different. No 2 patients are alike and no 2 heart attacks are alike. Trust your instincts. If you think something is seriously wrong, don't wait. And don't try to drive yourself if you are having chest pain. I have done that before and now realize how insane it was.

Take care -
Dianna

Everyone is different. No 2 patients are alike and no 2 heart attacks are alike.

shotzi999

I have pain just like you describe - never happens while active. I get it driving to work or sitting at my desk and it seems it is never in the same place. Mine lasts all day at times, but I have found that taking a Xanax has made it go away - not every time but most times.

My cardiologist has listened and I was admitted to the hosptial twice and admitted but tests were normal. I think if can be anxiety driven.

Not knowing what to do is the worst. Go to the hospital or not. If I went every time, I would be at the ER 3-4 times a week. I don't know what the answer is but I hope your new doctor can give you some insight and I hope you share your experience.

T

BarbaraGale

Hi Darla. My two cents: First: Stress tests have a 17% innaccuracy rate (I was one) and do feel free to say that to your doctor when he/she claims everthing 'looks okay.' Secondly: As for doctors, I just - unapologetically - left my fifth, went back to number one, and am keeping my eye out for the sixth. Thirdly: I made a friend in cardio rehab there ONLYas a result of pains in her neck & jaw, something for you and your doctor to consider. Good luck.

Caddie

Bo,
You asked if Prinzmetal's runs in families. It does run in my family. My mom, I and my brother all have it and we suspect that two of the grandkids have it. I also have a aunt and a uncle with it to.
Sometimes I wonder if it isn't as rare as they say it is, that it is under diagnosed.
Good luck, Caddie

judythe12

Is there a female cardiologist in yor community? I found that mine was so much more sensitive to my symptoms - which are never the same as male providers. I'd search to find one, do a background search on her, talk to people who have seen her, and bring in the material you have collected. Too often we allow the doctor to control our session - you are the consumer paying money to get a service. Take someone with you who can take notes if you are too nervous to do so. And - go with your questions written down so you do not forget what you want to know. You can insist on as many opinions as you want and you can ask the doctor to do some research on your symptoms. If you are close to a teaching hospital, you can see one of the teaching cardilogists.
Whatever you choose, do not give up until you have found the right person to work with you. I have no doubt that you have an unusual presentation that needs to be figured out like a puzzle.
By the way, none of this is easy - I have just chenged cardiologists myself from a prestigious male group because no one was listening to me after I had my heart attack and I was getting no test results, etc. And - I am a health care provider myself who knows the system well. It is not you who is broken - it is our health care system. Good luck and let me know how you make out.

goingstrong

Dear God, Diana, you are so clear in your instructions and I'm embarrased as a provider (NP) to hear you say it, but it is true with many cardiologist I've talked to! They can be so darn arrogant!!!

We have to act like morons to be "heard!"
Yuk! But, if swallowing my pride in being well informed and then acting dumb will get me appropriate care, I guess it's ok. After that, I might be looking for someone who appreciates my being informed! I know they are out there!
Lynn

Bo

I swear I've learned more by reading questions and answers on this website than from any other resource! Y'all (yes, I'm from Texas) are great! It's a relief to know that I may not be crazy or a hypocondriac. (the crazy part is questionable)

Judythe12: I don't believe there are any female cardiologists here. Dallas is two hours away and has many excellent cardiac care facilities including teaching hospitals. If necessary, I will ask to be referred to someone there. I'm sure that any special tests would have to be done there anyway.

Caddie: Thank you for telling me about your family. It's the first time I've read anything about the hereditary possibilities. I spoke to my son this morning and he told me that he can remember having these pains even as a teenager. They were so short (about a minute) that he never mentioned them to me.

Shotzi999: Has your doctor given up on trying to help you?

Darla

KSdesign

Hello Bo:
Although I don't normally join in the discussions, this website has been an invaluable resource for me. I have learned much more from other women's stories than from my doctors. That being said...
Your story is similar to mine - so please read. I started having weird chest, shoulder, neck and arm discomfort - it would come first thing in the morning, and then again late at night. Each time it would be several spasms of 3-5 minutes each, lasting about an hour. At times it was incredibly uncomfortable. I also had shortness of breath and chest pain when trying to walk. I had been getting increasingly tired over the previous couple of months. I went to the ER first time I noticed the shortness of breath/chest discomfort. They gave me ALL the tests and said my heart was fine. Learned later that those tests are only 85% accurate, and it can be very hard to diagnose women. Spent 2 months going to different doctors trying to figure it out (PCP, pulmonologist, psychiatrist, endocrinologist, gynecologist). Finally got a referral to a woman cardiologist. She thought there was only a 50% chance I had a blockage (I have no risk factors, 51 years old), but sent me in for a cardiac cath. They were surprised to find that I had a 95% blockage in my LAD artery. Were able to put in a stent and I am feeling so great 8 weeks later. I think I was having coronary artery spasms (Prinzmetals), but of course the docs don't like you diagnosing yourself. I had no heart damage. Please be persistent - I wish you the best of luck.
Karen

Ecksunbeam

Dear Bo,

I agree that you should seek out a female cardiologist. She is likely to be far more familiar with heart disease symptoms in women and more compassionate to your plight.

I also suggest that your request a doppler on your carotid arteries.

If you are, indeed, suffering from Printzmetal's angina, you might request to be switched from a beta blocker to a calcium channel blocker along with low dose Xanax and nitro. to see if you get any relief. Depending on your unique circumstances (BP, HR EF, blood tests, liver enzymes, etc.), some doctors prescribe both beta blockers and calcium channel blockers for Printzmetal's.

I do not recommend taking your research with you on your first visit and slapping it down in front of a new doctor and going, "Here, look at this!" as you will automatically set that doctor up as defensive. There's a such thing as proper timing. Let your doctor get to know you a little bit. You can voice your symptoms, worries and concerns, tell your doctor you've done some homework, and what you think it might be. But if you truly want a fresh opinion, I'd allow your new doctor to take it from there. You are there, after all, because you need their help.

A little flattery goes a long way. Once I was in a postion to do so, I did, in fact, carefully research the credentials of my doctors--but I have also made a point of telling them that at my first appointment--that they were "selected" by me because I was impressed by their credentials (not as a consequence of a bingo chip), and I'm putting my trust (and my life!) into my choice. Everyone of them has consequently stepped up to the plate. I find it's best to have an attitude of: "Let's put our heads together and see what we come up with." It seems that if I listen, they listen. (That does not mean we have not had our disagreements. I have been prescribed three medications, Fosomax, Prednisone, and Neurotin, that I absolutely refuse to take. My stand on statins is very "iffy" right now. But these decisions on my part were made after a great deal of research and contemplation--and the fact that this is MY life. On the other hand, I stopped my statins a few months ago. My doctor's response, "NO! NO! NO! SPANK! SPANK!" She prescribed a different one and so far, so good. I'm being a good little girl right now and taking the dang things. So, it works both ways.

I think your son should also be seen--by a different doctor--and evaluated on his own merits/symptoms. You can then put the conclusions of both doctors together and see if there is a common picture.

Although angiograms are the gold standard of heart tests, doctors do not hand them out like candy, no matter how much you beg. You usually will not get one unless you have all ready had an actual heart attack, or your doctor has strong reason to believe you have a blockage based on all the other testing and medication adjustments. They cost thousands of dollars and doctors are strongly regulated by insurance companies. It's sort of like the cops won't come until the burglar has the gun held up to your head. Bummer. After being re-evaluated and having some time to adjust to new medications, if you are still having symptoms, your new doctor may suggest an angiogram; but unless you appear to be on your deathbed you are not likely to get one right off the top.

If all heart testing comes back negative, you might also want to be checked by a dentist or other specialist for TMJ. I am a therapeutic massage therapist and you would be surprised at the muscle aches and pains that can occur as a consequence of clenching your jaw or grinding your teeth-especially over a long period of time. And yes, it can extend to your neck, shoulders, back, and chest.

Someone else suggested keeping a symptom journal. Experiencing angina at rest, but not while exercising, is an unusual occurence. You might also want to examine your thoughts were just prior to experiencing an angina attack. Are they fearful or negative? Are you ruminating over minor issues? Examine the stressors in your life. You can try some relaxation/meditation exercises, or simply lay back and listen to some soothing music. If you still experience angina while doing these calming exercises, then you can probably safely assume something else physical is going on.

My best to you.

May the Blessings Be!

Sherrie

mamaellie

Well all I can say you are doing the right thing by changing doctors. Any doctor who will not even pretend to read your info is an arrogant .... I also had a doctor who was too "exceptionally brilliant" to read a print out from The PDR showing the side effects of a med I was taking. I guess there are people who think they know everything, remember all and need not expand their knowledge. This certainly is the person to run from.

I would present your symptoms and your evaluation to your new doctor and quickly follow it up explaining these are the same symptoms your son has recently begun to experience. How about your son going with you? Not only would he be your medical back up but also it is good to go with another person. This way if you forget anything or get too upset or emotional the other person can give you a time out by speaking with the doctor for clarifications, etc.

Ellen

Bo

I can't thank all of you enough for the time you've taken to give me your thoughts and the invaluable info. The doctor I will see tomorrow is my mother's cardiologist and she thinks he's great. So, we shall see. I'm hopeful, but if it doesn't work out, I will definately look for a female cardiologist even though it means traveling 2 hours.

Darla

Bo

Just an update. I saw the new cardiologist this morning. The bottom line is that he feels that a 64 Slice Cat Scan is called for and will wait for that result before doing much speculation. He did mention the possibility of coronary artery spasm and/or X factor (?).

For now, I will play the waiting game with BCBS. They have up to 30 business days to approve the test.

Thanks again to everyone! Darla

Ecksunbeam

Dear Darla,

A 64 slice CT scan will show if you have an excess amount of calcium in your arteries and is a good place to start. It's a very new procedure--state-of-the-art (easy--non-invasive) and many doctors/hospitals do not yet have the equipment. You are fortunate in that regard.

Be sure to get your 3D full-color photo of your heart. It's pretty nifty!

May the Blessings Be!

Sherrie

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