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Fibromuscular dysplasia  and painting a room?


Recently, somebody asked me what caused my strokes. It is a complicated answer. Therefore, I just say I had a "torn carotid artery dissection."

In reality, I have a congenital condition called fibromuscular dysplasia. Essentially, the arteries in my head are weak and it gets worse when you get older.

There is no cure however medication can control it through blood thinners.

Here is the official article about it written by  Dr. Ido Weinberg who is Founder and Editor in Chief of the Angiologist.com. He is Assistant Professor of Medicine in Harvard Medical School and a Vascular Medicine doctor in Massachusetts General Hospital. He also holds a specialty in Medicine from the Hadassah Hebrew University Medical School:

 Fibromuscular dysplasia (also known as FMD) is a medical condition characterized by abnormal cell growth within the arterial wall. FMD is different from other blood vessel disorders that affect the arteries, such as atherosclerosis (blockage of arteries secondary to cholesterol plaque), vasculitis (inflammation of the arteries), and thrombosis (formation of blood clots). FMD can lead to different abnormalities of arteries, such as narrowing, a beaded appearance, or even serious complications such as aneurysms (bulging of the arteries) or dissections (tears of the arteries). FMD is not known to involve the veins or the lymphatic system. 

 Artery Dissection: The Clinical Problem

 Patients who have experienced a non-traumatic artery dissection have basically proven that their arteries are weak. Thus, there is a more than theoretical risk that these patients may experience another dissection; either at the same locatoin or at another location. Patients obviously would like to avoid another dissection, but also preserve as much as possible their quality of life. So the question is: What activities should patients avoid after suffering an artery dissection that was not precipitated by trauma?

 What do we currently know about activity restrcitions after dissection?
The short answer is “not much”. We do know that some patients who have suffered an artery dissection may have another one. We also know that many do not. We know that in some patients we can identify a non-traumatic trigger such as cocaine abuse or elevated blood pressure. As long as these triggers can be avoided, another dissection should not occur. But in many patients we just do not know what the cause of the dissection was. 

 In other patients we know that they have a real weakness of their arteries. For instance we know that patients who suffer Ehlers-Danlos Type IV can suffer from recurrent spontaneous artery dissection. However, in many patients we cannot identify who as at risk and who is not. For instance, we don’t know what makes some fibromuscular dysplasia patients more at risk than others or even if an FMD patients will incur a second dissection after suffering a first one.

 In regards to risk of artery dissection with activity, we know that some activities are associated with artery dissection more than others. Carotid artery dissection has been described after chiropractic manipulation. Roller coasters are also a “no no”. Martial arts and other forms of direct hard physical contact also make good sense. But what about yoga? Painting a ceiling? Light weight lifting? Swimming? Sexual activity? We don’t really have a good sense for the risk associated with these. As a result recommendations are all over the place. While I do not know of specific studies comparing physician practices, I have seen all sorts of recommendations from my colleagues. In most cases, these are not based on fact, but rather on physician clinical assessment, for whatever that is worth.


What do we currently recommend?
There are no specific evidence based practice guidelines to guide activity restrictions after artery dissection. Large medical centers such as the Cleveland Clinic and Massachusetts General Hospital have come up with their own set of recommendations. These recommendations attempt to make life safe for patients after a dissection, without limiting their wellbeing. Here is a list of recommendations I offer my patients. It is based on my opinion and a result of internal discussion with my colleagues:
Avoid all activities which increase the risk of sudden, rapid, or severe neck motion or activities that maintaine the neck in an extended position for a prolonged period of time. Note: All activities that you may engage in cannot be covered. 

 However these are a few guiding principles for activities to avoid:
* Chiropractic Neck Manipulation.
* Yoga and Pilates (Note: without neck manipulation these activities are acceptable).
* Heavy weight lifting (particularly neck and upper extremity). Light weights are acceptable. Tip: Avoid weights that make you grunt (this is also known as valsalva). Breath through all weight lifting maneuvers.
* Prolonged neck flexion or hyperextension for extended periods of time (i.e. ceiling painting, having hair washed at hair dresser or prolonged dentist treatments).
* Deep tissue massage of the neck (lighter massage is fine).
* Roller Coaster Rides or similar amusements type rides.
* Contact Sports such as martial arts and American football.
* Zip riding.
* High intensity aerobics (moderate aerobic activities such as swimming, cycling and running are fine).

Years ago, my neurologist cautioned me to be careful. We were going to Disney World, and she said your days of riding intense amusement rides are over.

But I had no idea that even painting a room could be an issue. Who knew I need to be careful washing my hair what's left of it?

But I have to realize that limited quality of life still means that I am living.
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Comments

Rebecca Dutton said…
A clearly written and comprehensive post on this subject - impressive.
September 5, 2017 at 7:42 AM
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