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A Diagnosis at Last

By Antony Horner

For as long as I can remember I've had pains in my legs when walking. After I start walking I get a dull ache in my calf muscle, if I continue it gets worse, but when I stop it disappears almost immediately. This story is how I finally got a diagnosis for this pain.

The Background

I was born in 1973 with Tetralogy of Fallot, after two failed heart operations I finally had a Full Correction procedure done in 1980, when I was 7. Since my operation I have done very well I, still get quite breathless on exertion, and have some rhythm problems which are common in repaired Fallots. But the one symptom that has bothered me the most has been the leg pain, which no one seemed able to explain.

When I was about 14, I told my cardiologist about the leg pains I was getting, he said it was just muscle, and I should do more exercise, as I was lethargic. Neither my mother or I were happy with this explanation, but it would be another 10 years before the mystery was finally solved.
A possible cause?

Some years later I attended a heart support group at my local hospital, the topic was exercise; I was the only GUCH patient there, the rest were bypass patients. During the talk the speaker described almost the same symptoms that I was having, but then went onto explain that this was due to Atherosclerosis, which is caused by deposits of fat narrowing the arteries in the legs, thus starving the leg muscle of Oxygen. Whilst I had nearly the same symptoms, I had non-of the risk factors, and was too young to have Atherosclerosis.

Atherosclerosis effects the circulation, I'd always suspected that the pain had something to do with my circulation, my legs are often blue, and my feet cold.
Should I ask him?

10 years later, and a different Cardiologist, should I ask him about the leg pain, or will he just dismiss it like the previous doctor?

The Sunday before my appointment found me in an internet chat room, I was talking to another GUCH patient. The topic of unexplainable symptoms came up, and the person who I was talking to agreed that it sounded like circulation, so I decided, I would ask him.

At my consultation, I explained to my consultant about the leg pain, how the previous doctor had said it was muscular, but I thought it was circulation. To my relief he agreed with me, at last some one was taking this seriously! He decided to refer me to a Vascular Surgeon at the Leeds General Infirmary (LGI), for a Doppler Ultrasound, to assess the blood flow to my legs.
The Ultrasound

Wearing nothing below my waist other than my underwear I lay on bed for the Ultrasound. The test had three stages, on two different machines, the first part was the Doppler. A microphone type device was placed on each leg, and a reading taken from each. The technician asked me which was the worse leg, "the left" I replied, "The circulation in the left is reduced" came her response.

The next part of the test, was the ultrasound, where the arteries of my legs were examined. The arteries in my groin area, caused particular interest, with the technician asking her colleagues to confirm what she was seeing!

The final part of the test, involved doing a couple of minuets on a treadmill, the Doppler was the repeated so that they could compare results at rest, and after exertion.

Where do we go from here?

A few weeks later I had my appointment with the Vascular surgeon, he explained that the arteries in my left leg, were only 2mm in diameter, which is 80% narrower than they should be. He explained that we had three options:-
  • Do Nothing
  • Angioplasty
  • Surgery
He also explained that he wanted to carry out a MRA (Magnetic Resonance Arteriograph), this would serve two purposes, to provide a bench mark on the current state of my arteries, and also to determine if balloon angioplasty could be used to widen the arteries.


MRA is a more sophisticated type of MRI, and I was fortunate to be a patient at a hospital that had an MRA scanner. Otherwise I would have needed an Angiograph.

On arrival at the scanning department, I was handed a questionnaire. Having declared that I've not got any metal bits, or may be pregnant(!), I was then shown into a changing room. Having changed into a hospital gown, I was then taken into the scanner room.

I lay on a bed, with my feet in the mouth of the scanner, the most unpleasant part of the test was the fact it took the radiographer 3 attempts to find a vein in my arm to insert an IV. Having established the IV, I was then moved into the scanner, and the scan started.

Being inside the scanner was actually quite relaxing, most of your body is enclosed within the scanner, but it is open at both ends, and the inside is lit. The hardest part of the test was to keep absolutely still.

MRA and MRI scanners are very noisy, and this one was no exception, a loud intermittent buzzing noise said the scanner was now scanning. If you're having one of these tests, make sure you ask for ear defenders!

The test progressed "Keep still" Buzz, Buzz, Buzz "Ok, relax", images of the bones and muscles in my legs appeared on a TV screen in the side of the scanner. Suddenly everything stopped, and the screen went blank, I thought the test was finished, but a disembodied voice said "We've got to reset the computer, so we'll have to start again, just relax". The computer reset, I was asked to raise my arms above my head, a contrasting dye was injected through the IV, and the rest of the test progressed with out further incident.

The results

A few weeks later I was back at the LGI for the results of the MRA. The MRA showed that the arteries in my legs were too severely stenosed for Angioplasty to work, so surgery would be the only option. The vascular surgeon explained that the narrowing would not get any worse, so I was not in danger by not having the surgery, and that the operation was quite major. I've decided not to have the operation for the time being, though the option is there should I want it.

The cause of the narrowing is not clear, it could be part of my Congenital Heart Disease, or it could be caused by the caths I had as a baby.

What this diagnosis means

Though I've decided not to have surgery, I am still very pleased to have a diagnosis. I now have a rationale explanation for the pain, I know its not psychological, I don't have to worry about people thinking I'm just 'swinging the lead' or lazy.

To any medical personnel reading this, I'd like to say listen to your patients, we know our bodies and know when something is not right. To patients, trust your instincts, if you feel something is not right, push until you get the answers you need.

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