MVD

• By MaryLG
• Reply 3488247
• October 25, 2012 at 12:27 pm
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Jenn, Yes, you do need a second opinion with someone who is seasoned in MVD. How old are your children? Before I would try Ranexa, I'd try some nitro - perhaps some spray or Nitro-Time (a 12 hour nitro capsule). If those help, I'd consider it a validating thesis. Ranexa can be great for some or not so great for some. (sometimes some tough constipation, pressure, etc) It takes some adaptation. Before I would go that route, I'd try the 12 hour.

I'm sure there are some people here who have MVD experience in the NY Long Island area and have a great doc/hospital to recommend for 2nd opinion. About the risk...either your doc doesn't realize there can be risk according to what they have studied (there are conflicting reports), or they are reassuring you. It's not all just about symptom relief. If blood flow is affected in the micros, then it reduces flow to the heart. That must be remedied. That said, understanding this diagnosis takes time. There is much they don't know yet.

I would imagine there are local centers of excellence. If I were in NY, I'd go see Dr. OZ (!) at NY Presbyterian, but I really don't know if he has many/any MVD patients. I would do the CARDIAC MRI that your doc is suggesting (provided it is the heart specific MRI that exists..not all facilities have it). It's the most comprehensive and least invasive macro test there is. Why not search here to find out more about that (in the search field).

It sounds like your MD is on the ball, BTW ~ but it never hurts to have more validation. If he/she is the first cardiologist, then you are lucky that you have an informed and open minded cardiologist, and that is not the most common experience.

All the best to you, Jenn ~ Mary

• By JennSullivan
• Reply 3488426 · In reply to 3488247 by MaryLG
• October 25, 2012 at 1:20 pm
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Hi Mary

Thank you for the reply. After reading your story I feel a connection. I am glad that the MRI may be a possible avenue to solidifying my diagnosis. I will double check the resolution but I am having it done at St. Francis Hosptial a lead cardiac hospital in Long Island although its not Columbia Presbeterian. I have seen two cardiologists now, both have tried to reassure me not to worry but with a 5 year old, 3 year old and 10 month old its hard not to think what if something is wrong or I am missing or they missing something. You seem to have done a substantial amount of research on MVD -can you recommend any articles and also what questions I should be asking my doctor. Also I was wondering what your chest pain feels like and where it it is? Mine is most of the time a dull sensation like a pulling on the outer inner portion of my left breast, sometimes is above the left breast and a few times it felt as if my breast was spamsming like a charlie horse feeling. I dont think I have any shorten breath but I have been very tired (although have't slept much because of anxiety). I used to run 3 x a week yoga 2x a week haven't done anything in two months because of fear. Just started walking for half hour again, pain doesn't seem to be affected by exerise. I have in the past two months had a handful of sharp stabing pain mostly occurs just once but scares me. Also did you have any ekg changes before your were diagnoses? Its scares me how you have to be your own advocate in healthcare and need to take charge. I am a smart educated woman and feel pressurred on what decisions to make and how do I know my drs are leading me down the right path. I can say that both drs. have afforded me every opportunity to have tests except an angiogram they have indicated at my age would prefer non invansive non nuclear test (39). I dont believe my syptoms are severe enough to go down that route but the fact is its 2 months later and they are still not sure is worriesome. I am wondering what pain feels like for other MVD patients. I know have a high thresold for pain because of my childbirth experiences so pain is different for everyone.

Please keep in touch and if you hear of any conferences, media events on this topic please share them. I need some validation that this is the right or wrong diagnosis for me.

Thanks,
J

• By pagal
• Reply 3489300
• October 25, 2012 at 6:16 pm
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Hi, I'm in your neck of the world and have been diagnosed with MVD after years of testing by top specialists in multiple disciplines. The doctor that diagnosed me is Dr. Michael Poon who is out of Stoneybrook and Mt. Sinai with his NYC office in Chinatown. I have excellent medical coverage which allows me to go anywhere and I thank God for Dr. Poon. He is a top doctor (Castle Connolly) in the US and he specializes in noninvasive cardiology testing. Dr. Poon is not a fan of provocative testing (he said for me that it is too risky) however other members here have done it. Mary said to try Dr. Oz however his practice is pretty much limited to thoracic surgery. Dr. explains things completely and I have done most testing in his office in Chinatown on a Sat. or Sunday. Had a Calcium CT done in his office for $100. which insurance won't cover and many other doctors charge a significant amount more for the test. I referred an acquaintance to him for local doctors weren't able to diagnose her problem and she now has a diagnosis and a treatment plan and is now at peace. My local doctor approves of Dr. Poon and is very familiar with his standing in the cardiology community in which he has been involved with writing many of the position statements. I know how difficult it is to pick a doctor in NYC for there are so many and I called many and researched prior to seeing Dr. Poon. His equipment is top notch including a 320 slice cardiac CT which most other centers don't have. Best of luck. Patty

• By MaryLG
• Reply 3492336
• October 26, 2012 at 6:40 pm
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Pagal,

Thank you for your details. I wanted to comment on the CT issue. With every test comes risks and benefits. Because we take on a lot of radiation with CTs (and I have had several, among them, the coronary calcium scan), I would discourage anyone from doing that. The cardiac MRI is capable of imaging the tiniest vessels and the CT is not. The CT excels at imaging calcium deposits, far more often in men and in post-menopausal women, but the MRI may do that, too. Not sure. There are newer and newer, faster and faster "slice" CT machines. Each new generation of machine is faster, higher resolution, less radiation. Each machine, though, must be paid for, even if it's an older, less cutting edge machine.

Younger women show occlusion (or let's say DON'T show occlusion) because ours is the soft, waxy kind. Also, they are starting to understand that while men show plaque bulges on the interior of the vessel wall, they suspect in women that this plaque is integrated INTO the vessel wall - in the actual wall structure, so it is far less imageable. They see this type of occlusion in women with a test called IVUS (Intra Vascular Ultra Sound). That is when they are either doing an angiogram or another procedure (possibly down through the esophagus), and they drop the ultrasound device in there. Through sound imaging, they can visualize the density and composition in the actual vessel wall.

As far as I am concerned, the Calcium Scan is a cheap test of self exclusion. A cardiologist sent me to have one because she threw up her hands, and I had not found my specialist. Remember, if doctors "own" a piece of equipment, it must be used and paid for, so think carefully and research if this hoop is the best hoop to jump through, when the real test is some other test entirely. I understand the desperation, and why we go along with things just searching for answers. I have self referred and sought "peace of mind" when I did it. It gave me that for a short while, but only briefly, and it has exposed me to tons of radiation, along with other tests and cell phones, etc. When you read up on the amount of radiation it is, it's scary, but we rationalize this in our agreement to jump through all these tests. I would not be surprised to find out eventually that I end up with some radiation induced cancer.

If it's not the provocative cath (and yes, it's higher risk, and I have heard that it's being done less), then it's the cardiac MRI (perhaps with provocation). Cedars Sinai is the one that I have heard the most about doing NIH studies with this approach. I would research what the larger MVD centers are and follow their protocol. There are tests that are used to image ischemia - that is the most telling thing. Remember, those centers see these cases in great abundance, whereas smaller outliers may not. With them, there are no diagnostic shortcuts. If you can't tell, I am in favor of seeing the experts, even if it requires travel.

We have some excellent links here on this site through some specific women with MVD. You may have something else, though, going on, so don't fixate on self-diagnosis. I understand you would like to put this in your MDs hands and have confidence. That said, I feel that this is one subject (MVD) that the experts - and answers - are very difficult to find. You do have to educate yourself to choose the right one, and you have to give yourself permission to ask questions and know that you might have to become your own expert along the way, too.

Best to you ~ Mary

• By MaryLG
• Reply 3492419
• October 26, 2012 at 7:19 pm
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Here is a training panel (you have to set up a log in to view) of young fellows asking more experienced MDs about how to sort through an "atypical" female patient. In my opinion, Dr. Fuster irritates me. Dr. Judith Hochman feels right to me. I would choose Hochman, if I were local to NY. I liked Stone as well, but I really really REALLY like Hochman, as she was very up on things. One thing they said was that an FFR test would help. That is Fractional Flow Reserve, done as part of an angiogram (I just looked that up!). If Hochman said I needed a CT, I would ascede, but that is because I would trust her approach, which is less invasive. I also like that she had an open mind and seemed far more up on things about the latest in women's data. This is an example of where we see four experts. How do you pick one? This is how one gets educated - probably overly educated they would say.

Here are the Experts:

EXPERT PANEL
Valentin Fuster MD PhD
Director, Mount Sinai Heart
Director, Zena and Michael Wiener Cardiovascular Institute and the Marie-Josée and Henry R Kravis Center of Cardiovascular Health
Richard Gorlin MD Heart Research Foundation Professor of Cardiology at Mount Sinai Medical Center
New York, NY

Gregg Stone MD
Professor of Medicine
Columbia University
Director, Cardiovascular Research and Education
Center for Interventional Vascular Therapy
New York Presbyterian
Columbia University Medical Center
New York, NY

Judith Hochman MD
Harold Snyder Family Professor of Cardiology
Codirector, NYU-HHC Clinical and Translational Science Institute
Clinical Chief of Cardiology
Director, Cardiovascular Clinical Research
New York University School of Medicine
New York, NY

Elizabeth Wolff MD MPA
Executive Director of Quality Improvement and Health Outcomes
Primary Care Information Project
New York City Department of Health and Mental Hygiene
New York, NY


http://www.theheart.org/fellows-cases/1414419.do

• By pagal
• Reply 3492483
• October 26, 2012 at 7:48 pm
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Hi Mary, Thanks for your input. Dr. Poon worked and researched with Dr. V. Fuster for many years at Mt. Sinai with many highly regarded joint published articles. Both are also experts in pulmonary hypertension. I trust Dr. Poon implicitly with my cardiac well being. I've read much of their research and am well aware of the risks of CT imaging. I've had lung surgery and have had far too many CTs in the the last 10 yrs. and I evaluate along with my doctors (cardiac, pulmonary, gastric) if any CT imaging is absolutely necessary. When we as a team deem that it's absolutely necessary then I will agree to the testing whether if be CT, MRI or anything else that they suggest. If I at any point in time I find that I need cardiac surgery that can't be handled locally, I more than likely will go to Dr. Fuster. I see physicians at NY Presbyterian as well as Hospital for Special Surgery and would also consider NY Presbyterian for cardiac care. The bottom line is that one must find physicians that they trust their life with. I've been blessed that I've found such a team.... Be well. Patty

• By MaryLG
• Reply 3492573 · In reply to 3492483 by pagal
• October 26, 2012 at 8:41 pm
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Hi Patty,

Just to clarify, my comment about the CTs was more for Jenn's and other future patient's benefit, not yours or ours, specifically. It's just that that comment triggered my own thinking about the excess of CTs I have gathered, along with now 2 MRIs and countless X-rays. It's kind of ironic that my comment about who I'd prefer hit upon someone who obviously is highly skilled and has an incredible background that you have some link to. You don't get to those levels without being tops. But you're right, everyone has to find and work with the "expert" that fits and resonates with them, and we make our judgements in different ways. I agree with you wholeheartedly - we have to find the people that we trust our lives with. I hope I didn't offend you with my opinion as that was an accidental coincidence. Nonetheless, experience doesn't come cheap or easy, does it?

All the best ~ Mary

• By pagal
• Reply 3492713 · In reply to 3492573 by MaryLG
• October 26, 2012 at 9:52 pm
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Hi, You're right. I've had so much testing done in the last 10 yrs. for many different things I sometimes forget that the dangers of many of the tests to the uninitiated needs to be addressed. I thank you for including your comments for that very reason. Off to see how many candles I can drum up in preparation for our upcoming superstorm. (live at the Jersey coast). Patty

• By Artista
• Reply 3493209
• October 27, 2012 at 6:28 am
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So glad you found this site! It indeed saved me more months of not finding the correct avenues to be finally on a more solid treatment plan! I just typed into Google my symptoms and it brought me here.... I found quite a few women with the same symptoms.

I was almost 41 when this began 2 years ago. 2 small kids (now 8 & 12) and like you- fit. An active woman with a teaching job and an art career. I meditated, yoga and ran 5k, 3-4 times a week. It perplexed docs for about 4 months and took a few more to get some relief and find the start of what would work to allow more energy and control my angina better.

Mary (a blessing in my life) helped me find a doc close to me and other women like joanincarolina who is a retired cardiac nurse and has MVD (or CMD- coronary microvascular disease no official term just yet, as we are pioneer patients in this) were life lines along with others here! Invaluable. I am unsure how much more I can add... Finding right doc that fits you is paramount!

There have been cardiac events associated with microvascular is ischemia. Some likely due to not being timely treated. Key is to treat symptoms and find out what you can do to avoid them. I empathize being a mom with young ones and tackling this. Please feel free to vent anytime you need to! We all get frustrated and often work out our daily issues on here. It helps to know you are not alone in this and I think we are all unwittingly gathering research info as we keep posting.... These online accounts help to parallel symptoms and how we all try to avoid and treat the triggers... If we can.

Traveling a distance to find right coordinating doctor is not new here. It sounds like Pagals Doc may be a good fit and indeed the trend is to be (and don't we all want this?) as Least invasive as possible. My first specialist at UPMC (Pittsburgh) agreed a provocative cath would only serve the intellectual curiosity of the treating doc but not me. What would it do for me? I still needed to treat my symptoms and the micros can not be seen in any test so far. He said, we don't see a migraine but we treat it right?! I liked him.

I traveled as far as Emory Univ in Atlanta, Ga to see Dr. Samady, because my local cardio wanted me to see someone who has seen lots of patients with CMD. I was his only one! I am very atypical even in the CMD realm so it was important to be seen by someone who understood the varying degrees of this condition. I se one Mary's discussion about testing. My first 8 months of this I had as much nuclear radiation exposure as is allowed by a nuclear power plat worker!!!!

Please don't hesitate to ask questions... I don't think I have ever stopped because much still needs to be known but in asking and searching you will gain more of a feeling of understanding your own reactions to your heart. We all have a lot of the same symptoms but each have certain treatment paths that work best. In this way over time you get to really know your body and be aware to what works and doesn't and some control of it makes it better.

I am so sorry you are dealing with this.

Love and light and above all clarity-
<3 Annette

• By pagal
• Reply 3494555
• October 27, 2012 at 5:15 pm
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Hi, Just back from Dr. Poon's appointment (yes, he has Sat. hours). I have most every risk factor for MI so I never thought too much more about the MVD in and of itself as causing a heart attack. I've read about the conflicting opinions and I asked Dr. Poon point blank today if MVD causes MI. He said absolutely, those that say that it doesn't are ill informed. He also told me that we've doing everything that can possibly be done for the MVD in that I'm taking Ranexa, Imdur, Norvasc and Nitro as needed. I also as per his urging this summer completed the EECP treatment and he told me that research is being done about doing a weekly treatment. The reason that I agreed to do the EECP was that I'm at the highest dosage of Ranexa that's recommended and I was having more breakthough pain than what I was comfortable with. I have multiple spine problems and told him that I'm reluctant to consider it at this point (my MVD is in check for now) for the thrusting motion of the treatment seemed to aggravate my ribs with considerable rib pain a result. I will readdress the issue if need be down the line.

As some of us well know it can take a number of years and circuitous routes to find the answers that we need. Glad you found more answers at Emory Annette. Be well all. Patty