Answers

I know this update has taken a while, but I had to do a lot of research before I could update this appropriately.

I had an appointment with my cardiologist on September 9th to review the results of my MRI.  As I've already shared, the most important information that I received is that I am tumor free!!  However, I did receive a lot of information on what's been going on with my heart at this appointment.  Dr. A talked for quite some time about a congenital heart defect that I had and how it was affecting me.  He referenced lots of pictures of hearts and talked a lot about veins and blood flow.  I thought it was making sense at the time, but after the appointment I felt really lost.  I obtained a copy of my MRI report from the hospital, did some research, and now feel like I understand what's going on.  I was taken off of coumadin and put on a daily aspirin regimen. 

I am missing the left superior pulmonary vein in my heart.  It's a congenital heart defect called a partial anomalous pulmonary venous return with the absence of the left superior pulmonary vein.  I found a terrific website the explains everything so clearly.  In a nutshell, this is a defect that I was born with.  It's considered very rare and is usually not discovered until adulthood.  It doesn't cause problems until later in life when the part of the heart is being taxed too much. 

Please check out this very simple website:  http://www.pted.org/?id=papvr1

Here is the basic info from the website:

This rare defect, one or more of the pulmonary veins carries blood from the lung to the right side of the heart, rather than to the left atrium (LA) as in the normal heart.

The anomalous (abnormal) pulmonary vein or veins may be connected directly to the right atrium (RA). They may also be connected to one of the veins that carry oxygen-poor blood from the body to the right atrium, such as the inferior (IVC) or superior vena cava (SVC) (as shown in the diagram). There are many variations of this anomaly, which occurs in boys and girls with equal frequency.

This defect often remains undiagnosed during childhood, and even during adulthood. Later in life, however, symptoms may arise that make surgical repair necessary. These include dyspnea (breathlessness) in response to exertion, atrial arrhythmias (flutter or fibrillations), or, more rarely, right heart failure and pulmonary hypertension.

Adult patients who have not been operated on in childhood may need to undergo repair if right heart enlargement (dilalation) occurs. This will be recognized through a heart murmur or through echocardiography.

Overall this isn't the worst news.  Dr. A thought this easily could have contributed to the TIA.  Also, it explains why he thought there was a mass in my heart.  Blood is mixing and my heart is being "pulled" creating the appearance of a tumor.    Because the left vein is missing, it's causing stress on the right side of my heart.  I will have a CT every year (as long as insurance approves it) to keep an eye on the pressure in my heart. 

Here's why:

The right ventricular end diastolic volume index in the right chamber of my heart is 117.5mL/m2. 

Normal is 60-88.  The definition is the amount of blood pumped out of the heart per beat

Right Right ventricular end systolic volume index is 54.2mL/m2

Normal is 19-30.  The definition is lowest volume of blood in the ventricle at any point in the cardiac cycle.

The left side of my heart is doing well. 
Diastolic volume is 61.7 with normal being 50-84
Systolic volume is 24.3 with normal being 17-37

I know that's a lot of technical informaiton, but at least all of this explains what has been going on.  I feel very relieved knowing what's happening with my heart and that I will be fine.  I'm under the care of a cardiologist and if my heart ever gets too sressed, we'll know. 

Thank you for all of your support over the last three months.  Hopefully I won't have any more news to report for one full year.

MRI completed

I went in for my MRI yesterday.   I took 1.5 mg of Ativan prior to the MRI.  Thank goodness I did because I was in the tube for two and a half hours!  I was very relaxed for the MRI and did a good job of following directions.  I spent the entire time in the MRI holding my breath every 30 seconds or so.  I would be told "breathe in and hold" and then could hear the MRI machine taking the images.  I was able to have headphones on and listen to music while I was in the machine.  It was actually fairly comfortable.  About halfway through I was injected with dye via IV and they did more images. 


The tech told me that the Radiologists would review my MRI and send the results to my doctor.  I already have an appointment to go over the results on Friday September 9th at 4:15pm.  I hate waiting!!!  I am just not patient enough to wait over a week to find out if I have a tumor or if I just have a bulging wall or oddity in my valve. 


I feel like if I actually make it to my September appointment the news will be good.  If anything is wrong I think they'll call me in earlier.  I am cautiously optimistic that on September 9th this whole fiasco will be over.  I am hopeful that there is nothing seriously wrong with me.  I can get off of the coumadin and move on with life.  But I'm also prepared if the news is bad.  I just want to know.

3rd Echocardiogram

I went in for my 3rd echo today.  It was very amusing!

I started with one sonographer who was searching for my mass and quickly found it.  Then a second sonographer came in and they were discussing if they could find the mass, and which angles they could see it from, etc.  They did this for about 15 minutes.  Then Dr A came in and took over the echo with the techs still there.  He ran the echo for about 30 minutes.  He looked at the mass from all different angles.  He and the techs were discussing the motion of the mass, how it related to my heart anatomy, etc.  Dr A kept saying over and over "what is that?  What is that?"  He discussed how it could be part of my wall that has an odd thickness and is bulging, how it could be an odd part of my valve, or that it could be a mass.  The good news is that he said it's not moving in the direction a myxoma usually moves.  But they have no idea what it is. 

After 45 minutes of watching my echo and listening to the doctor and techs talking he decided I should be sent for a Cardiac MRI.  This has to be done at the hospital.  He plans on giving my a medication to slow my heart rate to improve the pics.  As far as the size goes, he didn't measure.  He said he was more concerned about the location and movement in order to determine if he wants to send me for the MRI.

The hospital should be calling me in the next day or two to schedule the cardiac MRI.  Hopefully after this MRI they can finally determine once and for all what the mass DEFINITELY is and what to do about it. 

More waiting!!

The Cardiac MRI is scheduled for Tuesday August 30th.

Follow up appointment to review MRI results September 9th.

Pics from my Echocardiogram

Follow-Up w/ my Regular Cardiologist--A Positive Appointment

I had a follow-up appointment today.  It was loooong, but rather uneventful and somewhat positive.

Dr A. was running 2 hours behind schedule.  John came with me to my appointment and we waited a very long time, but Dr A was cheerful as usual.  He asked how I'd been feeling and how things are going.  I told him I feel great!

We discussed the fact that some of the other doctors are un-concerned about the mass on my heart. He did show my films to a few other doctors and they didn't know what the mass was, but initially didn't see it as well.  Dr A said that he is still concerned and that he would rather be wrong than be unconcerned and miss anything.  He had me repeat an echo cardiogram in office today.  The mass was still there in the same place.  The sonographer thought it was probably just a shadow, but what's the likelihood of there being a shadow in the same place on 2 echos and 1 TEE?  Dr A wants me to come in for another echo cardiogram next week some time and Dr A will be present during the echo to guide the sonographer and try to get exactly what he wants.  He wants a measurement of the mass and wants to compare that to the last measurements.  Then if he is still concerned (which he believes he will be) he will schedule the iodine test, 3-D imaging of my heart, in one month.

Dr A did mention a few times that the mass could be nothing more than a bulging wall, or it could be something more serious (like a myxoma?).  So more waiting it is.  The only bad news is that my theory that this could be a thrombus, blood clot, is gone because if it was nothing more than a blood clot the mass would be gone now.  Coumadin would have destroyed it.  So we're back to a mystery mass in my heart, or a bulging wall. 

2nd Opinion Appointment

I went for my second opinion appointment today.  Unfortunately I feel like I just wasted 3 hours of my time today.

My appointment today was with a very large group of cardiologists.  My mom went with me to this appointment and when I walked in the door I was just overwhelmed.  There were probably 50 people in the waiting room.  It felt like I was at the DMV.  I was called back 3 separate times to different windows to do different things--registration, signatures, check-in, history, etc.  It was very factory-like.  And I felt much too young to be there!!  It felt like a senor's center, not a cardiologist's office.  =) 

When I was finally called back and the doctor came in, the doctor glanced over my medical records that I brought.  I literally brought an entire binder full of records and the doctor just glanced through them.  Dr. R was very polite, but just seemed kind of cold and un-concerned.  He took my DVD that has a copy of my TEE on it and left the room.  He returned about 10  minutes later and explained that he had to try a few computers before he could get the TEE to open. 

Now I've opened this disc myself and it has about 30-45 videos of about 5-30 seconds each that can also be viewed frame by frame.  My current cardiologist, Dr A, told me that when he initially viewed my TEE that he didn't see anything.  He only saw the mass when he looked frame by frame.  Dr R who I was seeing for a second opinion told me he didn't see anything at all and that it was probably only a shadow that Dr. A saw.  Dr. R recommended that he do a TEE himself and that he could do it soon.  He also said it was a fine plan for Dr. A to do another TEE in a few months as planned. 

I would be thrilled if this was nothing more than a shadow that happened to show up in the same spot in both my echo and TEE.  Or, as Dr R suggested, maybe it's just a blood clot.  However, I don't feel convinced of much that Dr. R is saying simply because he spent maybe 5 minutes looking through 45 minutes worth of echos.  I'm concerned that he didn't look long enough to really make sure there's nothing there.  He didn't even see the "shadow".  And then he recommends doing a TEE??  It just seems odd.  And I felt like just a number in the bunch.  And even worse I'm young and healthy looking compared to all of the other very elderly patients at the office--I think that leads to some bias.  I just didn't get a good feeling at that office.

So here is my plan...hope for the best, plan for the worst!! 

I'm going to stick with Dr A and do the TEE and 3D imaging in September.  He knows what he's looking for in my heart and on the TEE.  If Dr A is still concerned in September, then I'll go for another opinion at that time.  Right now, I'm going to try and forget about everything and just relax.  It MIGHT be absolutely nothing.  Wouldn't it be great if this was all nothing more than a shadow or clot in my heart?  I can't think of a better outcome!  But if it's not, I would definitely rather be cautious and have a Dr. who seems to have my best interest at heart (excuse the pun) and treats me like a person. 

I have a follow up appointment with Dr. A 2 weeks from today.

So my goal in the meantime---RELAX!!! I will stop researching this and go with the fact that the myxoma may not be a myxoma and stop worrying until the next tests are in. 

Great appointment with my PCP

I had an excellent appointment with my Primary Care Provider (PCP) today!  Here are a few things we discussed:

• She agrees with the neurologists that my admission to the ER was more than likely a complicated migraine.  She reminded me that migraines frequently do not involve headaches and that ALL of my symptoms correlate with that of a complicated migraine
• She called me a "Red Herring".  She explained that this means although I was admitted to the hospital for one thing (TIA) what they found was even more important--the mass on my heart
• She told me I don't have to continue to follow up with any more neurologists unless I experience any more migraine like symptoms.  She said I may never again have these symptoms or they might occur regularly or sporadically
• She told me to stay on Coumadin.  She also said once I have a few weeks in a row of good INR readings I can switch to blood draws every 2 weeks, then once a month. 
• She suggested that I seek a second opinion from a cardiologist outside of my Doctor's group.  She told me that she has a great respect for my cardiologist and feels he's doing a great job, but with something so serious it's excellent to have a second opinion from a different group of doctors.  Sounds great to me!!
• She told me that if I am scheduled for heart surgery to seek opinions from at least 2-3 heart surgeons before scheduling

All in all, a great appointment!!  I have a new cardiologist appointment scheduled for Monday July 25th with a large group of cardiologists at a Heart Hospital here in AZ.  I have a follow up appointment with my regular cardiologist on August 8th.  In the meantime, I'm happily cancelling my follow-up neurologist appointment.