mvp symptoms & drs blowing me off

[3kidsincollege]

I have MVP and after every possible heart and lung test, learned I also have a PFO.  My MVP is mild with mild regurgitation.  My symptoms are severe.  I get out of breath easily but all my pulmonary tests are normal.  I have chest pains, dizzyness, out of breath very easily, a pounding heart when I lay down.  My latest symptoms are burning sensation on my arms and my arms and legs turn purple and get white dots.  I've been to two primaries, three cardiologists and three pulmonary guys.  I've been told it's stress, anxiety, deconditioned etc. I've humored them by taking anti anxiety medication and got a personal trainer to get 'undeconditioned'.  I have two questions.  If my symptoms are so severe and seriously affecting my quality of life, why won't they close it?  Because I've been turned down for closure because my MVP is measured to be mild, I am thinking of going to India to have it done.
Is there a way to look into hospitals and doctors there?

[joanincarolina]

Oh, the other research connection with MVD is sleep apnea. There is no real test for MVD but it is considered an exclusionary diagnosis. The docs must listen and when all else is eliminated, then the diagnosis of MVD with or without spasm is made. Remain calm.I entered MANY doctor offices, repeatedly, confidently, having found my own problem by searching NIH sites. I write to researchers all over the world.There is no consensus or agreement with this area so it is a treatment of symptoms, pain control and identifying triggers. Remember, I'm severe and there are different degrees to MVD. My heart meds are Cardizem (CCB) 120 mg twice a day, aspirin 325 mg twice a day, and I worked my way up from 'as needed' nitro under the tongue to wearing nitro patch 24/7. I take a low dose elavil at bedtime which is indicated for use by helping the brain's reaction to pain; very much part of the cycle of  MVD and spasms. I just started CPAP 10 days ago.If I have a bad angina attack, either from heart vessel spasm, or extreme chest tightness with shortness of breath, I use a nitro spray and take 5 mg xanax as I must stay quiet for a bit and really slow down. I watch my triggers, exertion, even slight is now one of them. I look great, no pre-existing conditions, have a great lipid profile,not a hypochrondriac, not obese, have all body parts, not anxiety ridden. I have never been 'labelled' as some of my closest medical friends,including doctors, have been down right confused by my presentation and watching me slip downward. Stay away from exercise until you get this straightened out; exertion is a problem with MVD. No cure but simple medical medication and exertion/pain management works. I'd do that before ANY PFO intervention. I've had members print out my journal and take it to the doctors with success.Don't be surprised if doctors don't know or are not real familiar with this: they can't keep up with it all and especially in this continuing area of research. Knowing what it is helps. Let me know. You can do this next step. Joan.

[3kidsincollege]

Joan--My symptoms sure could fit MVD.  You've got me thinking now.  I've read up on it a little since your post.  My hands and feet are cold a lot.  My skin turning blue would make it fit.  The chest pains, chest tightness, excercise intolerance all fit. I don't fit any of the risk factors though.  I'm not overweight, my BP is low, my cholesteral is low, no diabetes.  I really wanted a simple solution (relatively simple atleast)-- a PFO closure and be done with it.  If it is MVD, I would be on medication and trying to control it for the rest of my life.  That sure is better than what I'm going through now though.  Doctors hate it when you walk into their office with a diagnosis. I read somewhere that that is an indication to them that you're a hypochondriac.  I am anything but!  I really don't like going to the doctor and the fact that I've been to so many trying to get this fixed shouldn't confuse any of them into thinking that I like going!  I almost dread calling my doctor about this.  I feel like I'm getting patted on the head with a 'dear, there really isn't anything wrong' look.
Do you take medication?  Do they make a difference?  I really don't want to go through
any more testing.  I can't imagine there is a test that I haven't had.  I would like to
try the medication and if it works I'll just keep taking it.  Some of the tests that I had
were 3-4 years ago.  In this age of cost containment, they better not try to make me
redo a test.  I've been through the retesting thing already.  This all started over 10 years ago and when I change doctors, they all want their own tests only to get the same results as the last test.  One more last interesting note--I too have sleep apnea.  I have been using  a CPAP for over a year now.  One of the pulmonologists suggested the test--not so much to treat me, but I think it was to get me out of his office because he didn't know what else could be wrong.  As it turned out, I had been getting headaches each morning which I really wasn't paying attenton to because I couldn't breath anyway-so what's just one more problem?  I focused on the big one-and that was gasping for breath. The CPAP is now just part of my less romantic life, but worth it in the long run. Please let me know about the medication that you are taking and how it made a difference.

[joanincarolina]

I just read your post on the expert forum.I agree that a mild regurgitation and a small PFO ( that hasn't had a recommendation of closure) could be causing your long duration symptoms.So let me take you down another path.You meet the age criteria, sex and symptoms to have involvement of your heart microvessels. Read my journal here at 'joanincarolina' and see what you think.I've been the course with difficulty getting an answer but I remained persistent and consistent.I have met other women with my problem and they track it back many years.  MVD varies among patients but as very similar underlying presentations. I'll be watching for the expert forum response. Don't lose your mind! You'll need it. Joan.

[3kidsincollege]

Thank you.  

I am not on any medications other than actonel.  I take calcium, vitamins and vitamin D supplement over the counter.  I am otherwise in very good health.  My daughter is a nursing student and did her practicum in a cardiology unit.  She said the PFO closures are very routine??  If they do it in a cath lab or laproscopically, I know there
are risks, but it wouldn't be open heart?? I think I'll take your advice and try the 'expert forum'.  Is it part of medhelp?  I'll keep looking.  I guess my real problem is, the size of the PFO shouldn't be the issue if it is causing me such problems.  Why are the guidelines so rigid about the size determining an indication for surgery.  I would think that my symptoms would be a major force in determining a candidate for surgery?  Your thoughtsYvette?

[Yvette BG]

I'm not a doctor, but it's my understanding that if a doctor agreed to do surgery, it would be to fix the PFO and not the mitral valve. That is, if your mitral insufficiency is truly only MILD. As Flycaster305 said, valve surgery is a very big thing and generally, they wait until it's moderate, moderately severe, or even severe to do the surgery--though a lot depends on your age, how much your symptoms interfere with things you want and need to do in your life, your overall health and what other conditions you have. The potential benefits have to outweigh the risks.  

What medications are you taking, prescribed by doctors and also over-the-counter items? That would be helpful for folks on the forum here to know, in order to better respond.

Have you tried posting this question to the "expert forum"? I'd be interested in seeing what the doctors recommend as well.

[3kidsincollege]

Thank you.
They won't do a TEE on me because of esophaughus problems--it's scared.  I had a few surgeries on my esophaugus (had to fight for that one too) but now it's MUCH better and I'm not on any medications at all--except actonel for osteoporosis.  I'm
56 yo. The PFO is supposedly not big.  They diagnosed it with the bubble test. I'm at my wit's end.  I just want it fixed.  If my symptoms are bad enough why won't they fix it?  Even if I got a doctor to fix it--would they fix the MVP or the PFO or both?

[Flycaster305]

You don't give your age, other problems like diabetes, high BP, CAD, and what other medications you are taking, so it's difficult to respond.  I'm not a health professional.  However, I have a PFO as does about 1/4 of all people, have moderate MVP and work out daily, and don't have the symptoms you have.  I'd be very careful about having a procedure that may not be needed.  On the 'Related Expert Heart Disease' forum about ten years ago there was a wonderful doctor who used to suggest that 'If you hang out in barber shop very long you will get a haircut.  If you hang out in a bar, you will have a drink.  If you hang out with cardiac doctors, you will get a procedure'.  Valve surgery is a very big deal.  I'm a volunteer in a cardiac sugery hospital and I can tell you that I'd be very sure that surgery would fix your problem before going to a foreign country to have it done.  
Congratulations for getting a trainer to get in better condition.  Keep us informed.

[Yvette BG]

Doesn't sound like fun; seems like you've kind of been through the ringer!

Have you already had a transesophageal echocardiogram? If not, I think I'd ask for one to see if maybe your PFO isn't more severe than what they are thinking, which might explain why your symptoms are so severe.