Months ago, I wrote a lengthy post extolling ECP and promised an update later. I am starting a new thread for my (again lengthy) update. Am I still glad that I had ECP? Yes! Has it completely relieved my symptoms? No! (Not yet).
ECP is a non-surgical, non-pharmaceutical treatment described below that can be used to treat certain cardiovascular and other diseases. The photo is of me having the treatment.
I have microvascular angina, which is angina caused by dysfunction of the small blood vessels to the heart, not the coronary arteries. My disease is characterised by continual (24/7) angina at fluctuating levels. It particularly strikes at night and is invariably aggravated by a daytime nap, whereas a gentle walk will very often ease it and enable me to “warm up” for slightly greater exertion. As well as angina (pain in chest/shoulder), I suffer a sensation of shortness of breath (SOB) and I used to have horrible, intense attacks – especially at night – with distressing changes in sensations relating to breathing. Those attacks are thoroughly controlled by a calcium channel blocker, amlodipine, but my “base level” angina was not so controlled.
As well as angina and SOB, I had a lot of “other” symptoms, including tingling, numbness and discomfort all over the place, gut problems including bloating and delayed transit constipation, light headedness, cognitive decline, and a change in my sensation of personal space.
Before I had any ECP I was sometimes very ill, on a bad day barely able to make mugs of tea for a few visitors, filled with unpleasant sensations. Everything about me felt wrong except for my senses of taste and smell. I was awake for hours almost every night.
What is ECP? It is a non-invasive and, to me, non-traumatic treatment that involves the inflation and deflation of leg cuffs in time with your heart. Remarkably, ECP causes the growth of new micro blood vessels: it seems that the waves of blood returned to the heart by ECP cause growth factor molecules and stem cells to shear off the walls of blood vessels into plasma, and these sheared-off factors initiate blood vessel growth. This link will take you to a folder containing two photos of me in ECP cuffs as well as before and after photos of myocardial perfusion: 1drv.ms/f/s!AotwJo71WtI6g5R... . There is an extensive literature on ECP but it is difficult to find a good general introduction. Here is a presentation: prezi.com/-73g4z5k9tx1/intr... and here a publication: clinmedres.org/content/11/4...
I was thrilled following a course of ECP in May: after a delay of 2 weeks, I had days when I felt normal again and unbroken nights! I could have danced for joy. Curiously, perhaps, my non-angina symptoms pretty much disappeared but I still suffered less good days when I experienced angina. As the effect of the ECP had been incomplete, I underwent a second 4 week course starting in mid-September. I was very disappointed, both during the treatment and in the following month my experiences were poor compared to the first course. In fact, my symptoms worsened with more intense angina whilst my non-angina symptoms put in an occasional appearance. Subsequently, my symptoms have improved, though it seems to me sometimes at a snail’s pace.
In the past two weeks, I have been mildly symptomatic during the day and able to undertake moderate physical activity, for example going for a one hour walk on some days has been an enormous achievement. Today I carried a 6 foot Christmas tree into the house by myself with no accompanying increase in angina (that may come later!): for me, that is a fantastic event. Although my symptoms have fluctuated, there has been a very welcome increase in stability and near-disappearance of non-angina symptoms. My nights are almost invariably disturbed, though.
So, I am seemingly progressing in the right direction and again able to enjoy – with limitations – activities of my pre-MVA life. That is a definite improvement. I am to have a further 10 hours of treatment before Christmas, in the hope that this will tip me over a threshold into remission.
So the ECP story continues for me. It doesn’t bear thinking about how my life would have been without it, and so I continue to recommend it, with the important caveat that it doesn’t work for everybody. Unfortunately, ECP is not NICE-approved and the data relating to its use to treat MVA are vanishingly small. So far as I know there are only two places in the UK where you can have ECP: an NHS unit in Bradford and a small private clinic with premises in Harley Street and Wimbledon. I was treated by Dr Robin Roberts’ team in Wimbledon – unless you can persuade your CCG to pay (unlikely), you will of course require either suitable health insurance or the significant funds to cover the treatment fees.