This MVD is all new to me!

• By SallyInTexas
• Reply 3456453
• October 13, 2012 at 11:13 pm
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You could also ask about Prinzmetal's Angina which is what I have. But you said yours happens after exertion, and PA happens mainly at rest. The reason I suggest it is that with PA all the tests are normal in the ER, and you get sent home feeling like no one believes you. This happens with MVD as well. Learn, ask questions, this is YOUR life not anyone elses; not even your husband. Be informed, ask what you are given and why they are giving it. I have to do nuclear stress tests, too, I can't walk a treadmill until I get to 150 heart rate, and I too, have had to make them stop during the process a couple of times because it is too painful. Usually by the time they give you the shot that stops it, you're done anyway.

I just got out of the hospital a few hours ago after being monitored for a day or two myself, and I understand it can all be very daunting. The heart cath itself is no big deal; you'll be asleep, and won't feel any pain from it. I would ask the cardiologist if he is going to use nitroglycerine IV while doing the heart cath. The reason for this is that if they don't, and you do possibly have arterial spasms, they might mistakenly see them as blockages, but with nitro it opens up the arteries better so IF you had a spasm they could actually see it while it happens. Lots of PA patients are misdiagnosed with blockages they don't have ( like me, a bypass that was unnecessary because they saw my spasms as blockages). I don't say this to scare you, but to empower you! You are your own best advocate. It could also help to see if you have MVD. Good luck to you, and should they say you need a bypass, ask for a CD that they made of the heart cath, and take it and get a second opinion from another cardiologist.

I know you're afraid, and wondering what life will be like from now on. But you are not alone, nor are you crazy, no matter how many dense ER docs you meet. Don't let anyone make you feel like it's not worth the effort to go to the ER or Dr., or make you feel it's all in your head. It's not! YOU can feel it, they can't. I wish you the best girlie!

• By Iloveliving
• Reply 3456753
• October 14, 2012 at 6:49 am
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Hi Barb,
Sally has pretty good advice to which I cannot add very much. What I would like to say is that lots of us have had to endue 'rubbish' from numerous ED docs and cardiologists.

I too have not been long out of hospital after a very nasty bout of chest pain. If you look up my recent discussion: "MVD doesn't occur in women" - Dr Dead Head you will get an idea of the rubbish that can come our way. I too do not show ECG changes whilst experiencing the pain. The only time I ever have was when I had my heart attack. It took a year before I was diagnosed with CAS and my arteries are clear.

I have been diagnosed with Variant Angina/Prinzmetal's/Coronary Artery Spasm as well as MVD by no less that two professors. And yet that stupid stupid Dr DH looked me in the face and told me that I could not possibly have MVD because I was not male and did not have diabetes!!!!

This community of women is a wonderful support. As Sally said, stay strong, you know what you are feeling. Hang in there and all the best. Do keep us posted too.

• By barbje
• Reply 3457593 · In reply to 3456453 by SallyInTexas
• October 14, 2012 at 1:37 pm
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Hi Sally,

I appreciate the information you gave me! Just having someone listen that isn't judgemental is a huge help! I will ask about the nitro. I have never heard of Prinzmetal's Angina so I am going to research that also. Again, thank you for sharing your story. I will keep you posted as I get information from my cardiologist. Hopefully, it will be positive feedback that will actually give me the tools I need to take better care of me!

Blessings to you
Barb

• By barbje
• Reply 3457597 · In reply to 3456753 by Iloveliving
• October 14, 2012 at 1:39 pm
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Dear Iloveliving,

Your post about dead head drs is actually what convinced me to post on this site! Thank you for the support and I will keep you posted. I am the only me I am ever going to have...time to take care of me!

Blessings to you,
Barb

• By MaryLG
• Reply 3457869
• October 14, 2012 at 3:35 pm
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Barbie,

The only suggestion (a very serious and major one at that) is read up on the CHALLENGE cath: acetycholine or adenosine (I don't think they do ergnonovine anymore), and know that the CHALLENGE cath is the ONLY. CATH. WAY. to diagnose. The challenge cath can do two things 1) let them have a good look at the heart, vascular system, and intervene if necessary (stents, etc). The CHALLENGE part is not always done at all facilities - in fact, it's very few facilities.

There is ONE other way - the CHALLENGE CARDIAC MRI (only done at few centers who have the ultra fast machine + protocol). It offers the ultra fast imaging + the ability to visualize the tiniest of vessels. A cath cannot even do that, except by inference via the challenge medication - then they can see the behavior of the vessels and how they affect the heart.

Caths are profitable procedures. They are the GOLD STANDARD. But they are NOT the gold standard for MVD... If you want to avoid a second procedure in case you get a false negative on the first cath (then you might be dismissed and treated like a head case), then make sure you know the difference - and seek it out at a heart center of excellence that has a women's cardiology program. No kidding here. Many women have had "fine" regular caths, but it didn't capture the problem. If you want to read about it, search this site for the terminology, my bio gives my own experience.

All the best to you! Mary

• By Iloveliving
• Reply 3458952 · In reply to 3457869 by MaryLG
• October 15, 2012 at 2:28 am
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Just to follow up on Mary's suggestions. I have had two caths and a cardiac CT following a heart attack. All were clear. I was told "non cardiac pain" by two cardiologists. We don't have access to the cardiac MRIs here and I have been advised by both Professors not to have a provocative cath. As a result I have 'probable' MVD and Variant Angina (CAS/Prinzmetal's) written in my files. I am still treated properly though I.e. except for Dr DH :-)

Glad my post about Dr DH was of value to someone other than myself too.

• By SallyInTexas
• Reply 3459014
• October 15, 2012 at 4:01 am
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So glad Mary chimed in! That girl is a walking medical journal I swear lol! I've been off here awhile Mary so I need to check that stuff out, and they are correct about provocative caththeterization which means they put something in to cause spasms to happen so they can see where they are. When I was first diagnosed with PA i was told that was how they used to prove it but found it was too dangerous.

• By SallyInTexas
• Reply 3459021
• October 15, 2012 at 4:14 am
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If you find that it is probable that you have MVD our PA find a cardiologist that treats other patients with it, not someone who's only heard of it.

• By haveheart
• Reply 3459513
• October 15, 2012 at 9:59 am
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Barbie,

Sally, Mary and Iloveliving all have offered you excellent advice. The good news is that dysfunction of the microvascular blood vessels is now at the forefront of cardiovascular research - as well as in conjunction with research in other medical subspecialties. The best news is that you are empowered to find the right physician who can correctly diagnose your problem(s) and recommend appropiate treatment. It is not impossible but it might take persistence and courage to continue to seek alternative opinions. The right cardiologist may be in your home town. If not, make the investment to travel to a center of excellence. As you do your research, note where the authors of the papers are located. In the US, you may consider the Mayo Clinic, the Cleveland Clinic, the Texas Heart Institute, UCLA, University of Arizona, and New York Presbyterian. May I suggest that for support you seek to join a cardiac support group, specifically WomenHeart? It is a free peer-to-peer support group for women with, or at high risk for, heart disease. I had the privilege of attending a symposium of Heart Champions. These extraordinary women will be of great help in their communities. If you have a group in or near your town, please take advantage of the opportunity to join. Keep us posted on your progress. Keep researching (enlist the help of professional librarians!), ask questions, never falter as your own advocate! Have heart! Much love to you and your husband, Lin

• By Artista
• Reply 3460227
• October 15, 2012 at 1:57 pm
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Hello ladies... I am not happy to welcome another new lady to this lovely group. : / Sounds all too familiar!!! All great advice so far. It is hard to pin something down with both Coronary artery spasms (PA i think is older term now???) or MVD. And you can have some of both. It is a process of exclusion that does unfortunately take time but we SHOULD be treated for our symptoms while they are figuring this out. Nitro in its various forms can open vessels and calm down symptoms. My first nitro were the SLs (sublinguals)... i then found I needed transdermal patches as i was taking too many SLs. If the SLs then it only makes sense you need more dilating to ease it and perhaps it is MVD. A few do not tolerate nitro well and there is a host of forms of it.

I am just back from my Atlanta trip to Emory University and I wanted to chime in on a possible testing. They can do a cardiopulmonary exercise test or CPET, also called MET-TEST. It is the latest test I will be taking next week. I refuse a cath in my circumstance as I am in stellar health otherwise. Been treating the MVD for almost 2 years and am going this way for some evidence. I have had the cardiac PET scan, the cardiac MRI (not challenge one) and neither showed anything to note, but this is not unusual. Esp if this is affecting us on a whole global plain of our hearts instead of one area. It takes quite some time for that to show up to see damage as they are micro and if you are not spasming on the test, that may not show either. Fun huh?

I will post about my visit under the title 'A Zebra Among Horses'- as that funny way we have talked about having MVD is just how I felt at Emory.

love and light to you all
Annette

ps have had difficulty posting lately from this computer not allowing me on this site saying not secure. It may let me once and then blocks me for hours. I do not know why!!
If it seems I am not responding- You can always reach me on the facebook blog under Microvascular Dysfunction name and I still do put up research, testing or scientific info on the Coronary Microvascular Disease page and both are public.

• By TwinHearts
• Reply 3460244
• October 15, 2012 at 2:05 pm
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Hello all: It is SO wonderful to hear of my "sisters" out there who are dealing with all the same issues I have for the past year. It's been such a roller coaster ride. I meet again with my cardio on Nov. 2 and plan to ask her some very direct questions about my diagnosis. She heads up the Women's Heart Health Institute at Stanford -- am I lucky or what that I stumbled into her! -- but she is so hard to get a hold of.

She did a cath on me last Dec. and said I had "endothelial dysfunction" due mainly to high cholesterol that I have not been able to manage due to the fact I can't handle the statin drugs. My blood vessels in my heart do not dialate when they are supposed to; rather they constrict. I'm on Isosorbide Mono 30 mg/day with Nitrostat for breakthru chest pain, diltiazem (calcium channel blocker) 180 mg/day, hydrocholothiazide (diuretic) 23 mg/day, plus a few other meds non heart related, including an experiment with very low doses -- 3x/week -- of Livalo (statin) 5 mg.

I'm confused whether I have MVD -- microvascular disease. I seem to fit the profile of folks who are posting here, but I really need to pin my doc down as to what I have. I think it is distinct from PrinzMetals angina, but not clear how.

It has been an incredible adjustment for me to slow down due to the chest pain, palpatitations that keep me up at night, and weight gain from the meds. I'm petitie -- just 5'1" and have gained 7 pounds since start of the year. That may not sound like much, but as a percentage on a small body, it really does make a difference in how I look and feel.

Any insights my fellow "sisters" can give me would be most appreciated -- thank you!

• By haveheart
• Reply 3460372
• October 15, 2012 at 2:55 pm
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Annette, thanks for the reminder about Emory University - a leader in the study of women and heart disease!

• By diamondjewls
• Reply 3460982
• October 15, 2012 at 6:52 pm
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I have been where you are at . Its started in 2005 with systems . It got worse and worse the tests they gave me were normal . The one test that did detect heart problems was the chemical stress test. I had four stents put in and I was very angry at the doctors not finding before 2011 . Its been a year now I still dont trust doctors anymore I am always second guessing them. I put a journal together sent it to the head guy at the clinic I went to with no reply. I changed doctors and so far so good . I have the journal here so u can read it if u want. Next week I am going in for a chemical stress test so I am nervous . Will say prayers for you

Julie

• By trigrandma
• Reply 3460986
• October 15, 2012 at 6:52 pm
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Hi Barbie, good luck tomorrow. You have a fairly strong family history so the cath is still a very good way to see what is going on. I will be sending good vibes:)

• By Artista
• Reply 3461199 · In reply to 3460244 by TwinHearts
• October 15, 2012 at 8:17 pm
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Twinhearts- this is certainly something you need to tweak! Docs need to be with us on it. We use so many forms of therapies from newer cardiac meds such as Ranexa to TENS units to lotsa nitro to meditation depending on the individual. With the mind-heart connection being prevalent we need to be on top of our mental outlook and how we fight anything as well as the meds treatment!

The non-obstructive heart diseases, especially with unstable angina, are very frustrating to all involved. Many docs are used to going on in there and fixing! With NonOB it is much trickier and difficult. It can be time consuming and a lot of trial and error but if you have the right docs and some patience, it can become more manageable.

• By TwinHearts
• Reply 3461782
• October 15, 2012 at 11:47 pm
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Hello DiamondJewels: What exactly is a "chemical stress test"? Is that where they inject the stuff that makes your heart stressed while in the cath lab? I believe I had that done when I had my cath.

• By diamondjewls
• Reply 3461890 · In reply to 3461782 by TwinHearts
• October 16, 2012 at 1:29 am
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Yes that is. I had gone thru all dif types of tests over 6 years and they found nothing. It got so bad I couldnt walk from room to room with having to stop 3 or 4 times to catch my breath. The walking stress I passed but the chemical stress test found it so next week I will be taking that test again cause its been a year since my stents were put in. Wish me luck

Julie

• By Artista
• Reply 3461987 · In reply to 3461890 by diamondjewls
• October 16, 2012 at 3:22 am
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Julie- interesting the chemical test was the one for you. I am wondering if the CPET/MET Test I get next tues will be that instead of physical exertion? Hmmmm.... I have heard that one wipes you out more.

Really hoping the best and easiest for you Barb!! Keep in touch with what you find with the cath! Crossing fingers n toes and sending healing vibes!

• By barbje
• Reply 3465677 · In reply to 3461987 by Artista
• October 17, 2012 at 11:00 am
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I had my cath yesterday and am recovering today. I have to tell you that the information that was given to my husband and son is inconclusive as neither of them took notes and specific conditions were mentioned by name and neither of them had pen and paper and couldn't remember what was said. Dr. basically said that he sees 20 - 30% blockages in two arteries in 3 different places. He said I had a "rare" condition where the blood vessels were constricting and decreasing blood flow during exertion (replicated by contrast)(opposite response in normal exertion) which would account for my angina. He placed me on Crestor for cholesterol, Imdur (sustained release nitro) and aspirin. I was so wiped out from the relaxant medication that I don't even remember the dr. coming in my room after procedure. I was discharge with follow up appt Dec 6, and the nurse saying "You must be relieved to hear that everything is ok and your heart is fine". This was a rather confusing comment to me so I said I had several questions for Dr. and proceeded to show her the info I had gained on MVD and Prinzmetals. She stated that she had "read" something about it but I would need to talk to my dr. about it...duh?

His office is supposed to do follow up call today so I am going to try to get more info then...

• By Artista
• Reply 3465870 · In reply to 3465677 by barbje
• October 17, 2012 at 11:58 am
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I am glad to hear it went smoothly. Will be interesting to hear about the follow up, but you still need to be on treatment if the symptoms continue as they have been and unfortunately I do not know why that would change. WAS it a challenge cath or regular one?

Be good to you!!!!!
xo
Annette