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Possible AV fistula
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Possible AV fistula

My husband and I are having a very hard time getting a proper diagnosis for his heart murmur.  Here is a little background:

My husband will be 28 in December, he is 6'1 and weighs 215 lbs.  He is active (in the USAF, doing PT at least three times/week - running 2.5 miles, and then doing push ups and sit ups).  

In March, I discovered he had a heart murmur.  I am a nursing student, so I have had lots of practice listening to heart sounds, and after hearing norm after norm, when you hear something "funky" you know it just isn't right.  Anyway, we were watching a movie, I had my head on his chest, and heard this weird sound.  I ran and grabbed my stethoscope and listened.

It sounds almost like a seagull.  
It is continuous with S1 and S2.
There is no S3 or S4.  No rubs.  
It sounds sort of wheezy.  
It is NOT his lungs.
It is at the right sternal border, about the second intercostal space.
It changes with the Valsalva Maneuver - gets louder while straining, disappears once relaxed, and takes about 5-6 heart beats to come back, and comes back in a decrescendo pattern...softer to louder.

It gets louder with inspiration
Position changes are variable.  When I first discovered it, it was louder while supine, but now it seems to be louder while sitting.  But it is still very variable, changing from hour to hour, day to day.  Sometimes it's so faint, I can hardly hear it until he changes position or takes a deep breath ( I have been keeping a very CLOSE eye on this!)

Back when I first discovered it, he was having no symptoms, just the murmur.  In May (murmur discovered in March), my husband starts to complain of dizziness, sporadically.  He also tells me that he's been having some sporadic SOB, but not during exercise, just once while walking through a parking lot, probably 50 feet, and getting so SOB that he had to sit for a moment - his friend thought he was kidding.  Then, in June, he was picking a fork off the floor, and got so dizzy when he stood up that he fell over (I have taken orthostatic vital signs, and when I took them, there was not much change, just his SBP and DBP raised a few points).  

A couple of weeks ago we were sitting at home on a Sunday morning, around 11am, and I look over at him, and his eyes are moving up and down, top to bottom, bottom to top.  I asked him if he was okay, he said "I'm dizzy, right now."  I grabbed my 'scope, and listened and felt his radial pulse.  Rate was regular, rhythm was regular, but his murmur got WAY louder, and changed tone.  Instead of being one continuous noise with S1 and S2, it changed with S2, almost like another wheezy bird.  My husband listened and said "it sounds like a donkey now."  The dizziness lasted about one minute, and I did not have time to check his BP.  

We have had the run around with cardiologists and doctors.  Every time we go, the doctor we're seeing is so surprised at what he's hearing that he grabs another doctor to listen in.  Now I will give you a background of our referral visits/findings.

Cardiologist # 1 (back in March, no symptoms) - gives the diagnosis of "mammary souffle" - we ask for more info, more of a workup, he says get a second opinion.  He did do an echo, which the only thing I saw on there was "mild tricuspid regurgitation" and "trace mitral regurgitation."   He brings in a fellow cardio doctor, who listens, looks concerned and says "I don't know, I'd order a coronary CT."

May, new symptoms, ask for second opinion from Primary Care Manager - sent to second cardiologist

Cardiologist # 2 -  Appointment # 1:  doctor listens, says it is definitely not a mammary souffle, gets friend doctor to listen, friend doctor and doctor agree "sounds like a fistula, definitely not souffle."  At first, this doctor was very concerned and ordered a Chest CT (he states that our insurance will not cover a coronary CT, but hopefully we will get a good shot of the heart vessels while taking the chest CT, but will definitely get good lung vasculature shots.  

Appointment # 2, day after appointment # 1 (husband was due to deploy to Afghanistan a week later, so things were expedited) - We get the CT at 0830.  After IV is put in and hubby on the CT table, the CT tech and CT RN tell him to hold on, they want to call the radiologist and see if this is the best test to avoid unnecessary radiation.  Radiologist says a cardiac cath would be the best test, so they call his cardiologist who says "no, do the CT."  We do the CT - Results - no AV fistulas seen in lungs, unable to see coronary vasculature.   While talking with cardiologist about results, he says that he is not an expert on AV fistula, but he spoke with cardiologist # 1, who says by souffle he means peripheral fistula.  Cardiologist now says this makes sense and it is probably not in the great vessels or deep, and that they don't do anything with them anyway.  He orders a treadmill stress test.  Results for that were normal, except his BP dropped during.  His normal BP is 118/74 and it dropped to 102/68.  His pulse was 84, normal is 72.  I have been checking this a lot as well.

We see his Primary Care doctor, and convince him not to send him.  He read the radiologist's report and said "this doesn't tell us anything, you're not going anywhere until we figure out what's wrong."  THANK GOD!!!

From my research, I have read that the S/S he is presenting with are usually associated with Sinus of Valsalva aneurysm (ruptured or unruptured) or AV fistula.  I have read that these are both very rare disorders.  Cardiologist # 2 said that a vascular surgeon would be the expert on these, but would not refer us.  We now have an appointment with a new cardio doctor, who is supposed to be a cardiovascular doctor, and his practice is downstairs from vascular surgeons, but we have to be diagnosed first by the cardiovascular doctor to get upstairs to the surgeon...gotta know whether or not he needs to be fixed before sending him to the surgeon...makes sense.  I am just praying that we figure this out.  I thought if you were a cardiologist, you'd have to be pretty expert in the heart AND the vascular system, at least the vascular system closest to the heart - AORTA / VENA CAVA.  The other thing I didn't understand is that they never ordered a second echo after he started having symptoms, and in all of his reports he keeps saying his echo findings were normal.  Once you start having symptoms, doesn't that warrant a new echo?

I am not sure what my exact question is, but I am wanting to know if there is anyone out there with experience with this, and what the best tests are to diagnose this and if there is anything else these S/S could be related to.  My husband describes the dizziness as being more of a "room spinning" than "lightheaded".   I have read that TEE and cardiac angiography are the definitive, but different people in different case studies had both and sometimes they were better diagnosed with TEE and others better with cardiac cath.  
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