Shanron's Story.

Fibromuscular Dysplasia and my personal 'Ifs'.

1. If I had listened to myself in 1996 when I said to Emily "I need to have an MRI of my head, but how do I tell a neurologist that I can't get my thoughts out" I may not have had TIA's and stroke 2 months later.


2. If my GP had put a stethoscope on my neck when I told him about my vertigo sensations every 5-10 minutes over a 3-4 hour period he would have heard a high pitched and continuous bruit. I would have been parceled off to Emergency, had an Angiogram and my carotid artery would have been dilated prior to my multiple TIA's and Stroke 2 weeks later.

Following carotid artery dilatation I had severe continuous migraine for 2 years which were associated with high blood pressure readings. My neurologist sent me to a nephrologist.

3. If the nephrologist had disregarded that one reading of 120/80 he would have done an Angiogram of my renal artery and I would have been, at the least, followed up and I would not have had years of undiagnosed Hypertension. Even if the FMD wasn't so advanced at that stage I would have taken my BP in the same way that I listened to the bruit over my left carotid artery for years to determine if a change had occurred.

4. If I had the knowledge about FMD that I have now I would have taken my BP regularly although infrequently and identified the onset of hypertension.

5. If the Hypertension had been diagnosed and treated, at least with anti-Hypertensives I may not have had a complete coronary artery occlusion and bypass surgery.

6. If the cardiac team had listened to my frequent pleas about FMD (the vascular surgeon had told me post stroke that I could 'get' FMD in coronaries and renal vessels) my hypertension would have been investigated instead of an off the cuff remark about how difficult it was to get me off bypass because they couldn't get my BP down and I needed to take an AntiHypertensive. If investigated my renal artery could have been dilated instead of waiting another two years when I became so frustrated with changing medications that I asked to see a nephrologist because I didn't believe I had Essential Hypertension.

7. If my renal artery stenosis had been diagnosed at my initial FMD diagnosis I would not have the kidney damage that I have now with resultant difficult to control Hypertension. (current medical thought believes that the effected vascular beds can be visualized at time of initial diagnosis)

8. However. There isn't an 'if' about my current nephrologist, the most thorough, concerned doctor I have ever met who has the added benefit of wonderful communication skills. I have her mobile which I have used (but never abused) when my BP is either too high or too low. As an added bonus she is prepared to listen to me and discuss the FMD research I have found.

9. And there isn't an 'if' about my vascular surgeon. Although initially I found him hard to relate and talk to, once I asked educated questions he took the time to discuss the pros and cons of certain actions in a clear and respectful way.

10. And there isn't an 'if' about my cardiologist who, when he wasn't my doctor, took the time to come to my room and explain his reasoning behind the treatment option he was recommending. This was the opposite to the regime that the admitting cardiologist had given me and made sound physiological sense. As an interventional cardiologist he is also willing to be involved in my FMD management through Intravascular Ultrasound.

So there are lots of 'if's' and a couple of 'however's but what I have learnt most recently is that taking responsibility for one's health means educating oneself, staying abreast of current research and self monitoring (although not to an obsessive degree).