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Prinzmetal's Angina - Desperately Need A Specialist

jmillerok
0 Recommendations

I am actually in need of a specialist for my 47 year old mother. She was diagnosed with PA after having a triple bypass (CABG) in May. All three of her bypass grafts have failed as a result of reoccuring PA (which was ironically mistaken for small heart attacks before her CABG). We cannot seem to find a combination of medication that will help her and to make matters worse, she also has small artery disease, which contributed to the quick build up of plaque. Because of this, we have been told there is not a stent small enough for her. I am in desperate need of a physician who specializes in Prinzmetal's Angina and/or small artery disease. If any of you can help, I would be eternally grateful. Thank you in advance.

Explore topics in this discussion:

Exercise Heart failure Surgery Verapamil Beta blockers Angina Menopause Stent Clopidogrel Norvasc Zocor Xanax Stress Heart disease Aspirin Cardiac syndrome X Simvastatin Imdur Atherosclerosis Pain Heart attack

25 replies

LizV

You might want to look into EECP, I just started this treatment this week - its 5 days a week for an hour a day for 7 weeks.

What they do is attach blood pressure cuffs to the calfs, thighs and buttocks and continually inflate and deflate according to your heartbeat.

The goal is to FORCE the blood into your heart and open up the clogged arteries, in my case its the small vessels, they think I have Cardiac Syndrome X (I'm 48).

They also use this procedure on people who should have angioplasts but would not do well for one reason or another with the surgery.

I think of this procedure as kind of like blowing out your sprinklers in the wintertime.

It can't hurt to ask her doctor about it- good luck

DoryO

Jmillerok,

I too was diagnosed among other things with small vessel disease. I searched and searched for information and found this from the MayoClinic.

http://www.newswise.com/p/articles/view/533974/

It gives information as well as ways to properly diagnose instead of Dr.'s just guessing.

Another site that I found when I 1st had my HA's last year is

http://www.medhelp.org/forums/show/114

You can post questions to Dr's about heart issues. This is the Cleveland Clinic--one of the best if not the best place for people with heart disease. There is oodle's of information there as well. When I got out of the hospital in 08/07 being told nothing was wrong I wrote a novel in the Dr's forum there about what happened and my symptoms. The Dr. wrote back saying "1st off you had a heart attack and why they didnt do a cath I'll never know". So he diagnosed w/o even seeing me......7wks later I had 2 heart attacks w/in 1hr.

So hopefully this will give you some help to find answers about how to help your mom. Good Luck to you both.

((((HUGS))))

Dory

LizV

You had a heart attack?! My doctor made be belive that my condition is not life threatening!

I feel like an idiot when I go to the hospital, even when they admit me because my ekg is so bad.

My doctor doesn't understand why its getting worse - this week I woke up one morning with my heart racing - supppppper fast I've also been having either heart palpitations or irregular rythem, which when it happens during the eecp treatment is really strange to have the machine just stop on me.

I'm trying to learn more about my condition, and my doctor is continually looking into it as it seems to baffle him and the other doctors in his office.

But, just to clarify - can I have a heart attack even though its my small vessals?

CJM3

Do a search on Microvascular Disease which involves the small vessels. If you can I reccomend you go see Dr. Noel Bairey Merz at Cedar Siani in Los Angeles. Microvascular is her thing and it can be diagnosed with an MRI. Dr.. Merz is my cardiologist even though I live on the East Coast- and she on the West. Totally worth every penny spent to go see her.

Google her name and a ton of stuff comes up.

Good Luck
SHaron

DoryO

LizV,

I'm assuming you were asking me about me having a heart attack. If you do the 1st link I put in my 1st reply it tells you

"These tiny clogged vessels don't show up on standard diagnostic tests, and doctors may assume that symptoms such as fatigue, light-headedness, or chest, neck or shoulder pain are caused by something other than heart disease. Yet, for some patiens---more often women--these symptoms CAN DEVELOPE into recurrent chest pain, a heart attack or heart failure."

Now my heart attack was because my aorta was 95% blocked and stented 0907. I changed cardio Dr.'s in 0608 to a female, she is the one who diagnosed sm. vessel disease. Her explanation to me was 'when they do the balloon in the artery to open the vessel it like squishes the plaque into the wall but some will get loose and go through your heart and land where it can....so the small vessels are the most vulnerable'.
I have chest pain periodically not constant like I used to so I guess some of the 17meds I'm must be helping.

Don't panic---I truely didn't want that for you or anyone. Keep your Dr. informed of how you feel, take your meds if you have any. I totally agree with what Sharon wrote.....Microvascular Disease is being more and more researched as they find out more about it new things will develope to combat or help correct the condition....I have no doubt in my mind.

Dory

jmillerok

I am unfamiliar with the term microvascular disease. That is not something that has been mentioned to us during our hospital stays. Of course, there is a lot that has not been mentioned.
CJM3...thank you for the physician recommendation. My mother and I have already been to the Texas Heart Institute and have been encouraged by her local physicians to go to Cleveland Clinic. We are willing to do whatever it takes though so maybe going to see Dr. Noel Bairey Merz might help.

DoryO

Microvascular disease & small vessel disease is the same thing---Micro meaning small--Be sure to check the Cleveland Clinic address I put in my reply to you earlier.

Dory

jmillerok

LizV,

Do you have reoccuring angina? If so, have you seen a decrease in pain levels associated with the chest pain? The closest place I found to us is about 45 minutes away. But if it works, it would be well worth it.

CJM3

Hi. Personally I would skip the Cleveland Clinic and go right to Dr. Bairey Merz at Cedar Siani. I was reffered to Dr. Merz by a doctor at the Cleveland Clinic. I was told that even though the Clinic is the number one heart hospital in the country, Merz is the one you need to see.

Dr. Merz can do an MRI that will tell you if you have Microvascular Disease. She is one of the leading doctors that has completed studies on it and is extremely well versed. Turns out I don't have Microvascular- than goodness as my other cardiac problems are severe- a positive diagnosis for me would be like being struck by lightening twice!

Google her name with the term Microvascular in it and you will find lots of information. You have probably not been told of it as it is still "fairly new" in terms of diseases etc. That is why it is important to go to the best. She is a lovely doctor and be prepared to be blown away with her intelligence and humor!

Please let me know if you do go to see her and what the outcome is. Tell her I sent you!

Sharon

Hany

Hi Sharon and Dory

Can you tell me what test you did to diagnose microvascular angina? And what is the MRI that they do? I am due to have MRI but I dont know if it is the knd that can detect microvessel problems. I think this is what i have got as they have ruled out everything else.Also symptoms match and taking nitro relieves pain. I wish I could go and see Dr Bairey Merz as they dont seem very knowledgeable on the subject here in the U.K.Thanks alot.

Hani

jmillerok

CJM3,

Does Dr. Bairey Merz specialize in Prinzmetal's as well?

Jamie

Hise

Hi everyone
Just to clarify for me: Is microvascular angina the same as Syndrome X? And if so, does anyone know, what symptoms distinguish Syndrom X from Prinzmetal - how do they diagnose the one from the other?
/ Henriette

Shone1

Syndrome X and Prinzmetal are two different diagnoses. They diagnose based on EKG, stress tests ect. Prinzmetal will have changes of the EKG but the Syndrome X will not.
Usually Syndrome X is chest pain with no cardiac vessel disease, so they dont know what is causing the pain.
I think both are very frustrating diagnoses as there are not many doctors that do specialize in either area.
If there is a specialist , Dr. Merz, I would go there. I tried the cleavland clinic, the e clinic thing and was very disapointed. I did not feel the physician really evaluated what I sent in, same thing as many others, not really listening to what you say!
Good luck and remember you are not alone!

CJM3

Hi. I got to Dr. Merz in a round about way so she was not the one to diagnose my spasms. As I can probably call myself her worst spasm patient I have been thrilled (she has given me my life back) with her in every way. I think one would be hard pressed to find a cardiologist that actually "specializes" in spasms. My first doctor did specialize in them but was not open to the fact or knowlegeable enough to consider that my hormones may be a contributing factor.

Dr. Merz or Goldberg are really two of the top cardiologist for women in the country and I feel you can't go wrong with either- I love them both!

sarrae

Dr. Merz at Cedars-Sinai! She is a specialist in both microvascular and prinzmetal's. If you can make the trip, it is worth it.

Good luck!

myra

Dear Sarrae,

You are really fortunate to be living in California, so close to Dr. Merz. By the way, I was born in Long Beach and lived there, with my family, until we moved to Tucson and later to Cleveland, Ohio. If I lived closer, I would see Dr. Merz also, because I have been searching a long time for a cardiologist who works with coronary artery spasms. I have tried several cardiologists around here, but to no avail. They are all looking for blocked arteries, from cholesterol build-up. As soon as they can't find any, they tell me my pain is coming from my stomach. My mother had the same pains, in the same place and she did not have any blockages either. However one day, she went into cardiac arrest and was pronounced DOA in the hospital ER. So, I am hoping to get an answer from someone, before the same thing happens to me. Fortunately, I have a good PCP and she is treating me for it. She has me on Verapamil 240 mg daily and I have Nitro, to take when needed. Hopefully that will work, until I find the right cardiologist. That is more than my Mom had.

I wish all you ladies a good day,

Myra

CJM3

Myra- You might want to see a Dr. Fred Heupler at the Cleveland Clinic. He is a specialist for Prinzmetal and will work hard with you to get medicated correctly. I saw him and he did a cath. to get my accurate diagnosis and path started to getting better.

Good luck!

Sharon

MIsurvivorX4

Hi Sharon/CJM3,

I have had three MI's due to coronary artery spasm (Prinzmetals) and have a well-documented and definite diagnosis. I am doing well now (at least at the moment). I have considered going to Dr. Huepler at Cleveland Clinic as I did research on him and his expertise. Do you mind giving more details on your visits with him? Did he do a cath w/ergonovine injection to Dx whether you had Prinzmetals or microvascular disease? Long story, but it took until my 2nd MI to get the proper diagnosis. It helped that the paramedics got a picture perfect ECG of my heart in distress with ST Elevation in all leads, all while I was blacked out. I also have cath film of numerous arteries in SPONTANEOUS spasm during first MI, which was a very rare medical scenario.

So I don't need to go see Dr. Huepler for a Dx, just for more info. Like, WHY do my arteries do this while I'm sleeping, reading, etc. There are so, so many theories, but no answers for me. I would like to know of more studies about this rare type of heart disease. I already participated in the study at JH in Cincinnati. BTW, my profile = Three MI's occurred at age 42 and 47, non-smoker, non-drinker, non-drugs, former runner, thin, college education, married w/two young kids, low BP, low lipids. Currently 49, occasional chest pains, and happy to be MI-free for two years and hoping forever :)

CJM3

Hi. I did have the ergonovine via cath. that game me the official diagnosis. Unfortunately there is not much out there on the topic- that is why the study at the JH is so important. Did the study find anything out for you? I am going to do it but my hemotologist wants me to go to them to get the more extensive testing. I too would like some answers but after extensive research and countless doctors I have none. From what I have been told some people grow out of this after menopause- I have a similar profile to you but have 3 kids! Just keep plugging along and enjoy life as best you can!

Sharon

MIsurvivorX4

I sent my bloodwork to Jewish Hospital for evaluation in their study. Mine turned out negative to having the defective gene. They suggested that I take L-Arginine, which I had been prescribed two years ago. I told JH that I would not be taking the L-Arginine because my current cardiologist told me not to take it after I showed her the new warning on the side of the bottle. The warning states that those who have had myocardial infarction to not take it. Does your bottle have that warning? Mine is manufactured by NOW Foods. I did not receive a response back from JH after I told them about the warning lable and my cardiologist advice to stop taking it.

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