Monday, April 4, 2016

Not just any stroke! “Fibromuscular Dysplasia.”

Many people ask what caused my strokes. I usually tell them that “I had a torn carotid artery.” Which is true.  However, the complete story is I have a condition called “Fibromuscular Dysplasia.”

Of course, there is a national website about it:

The Fibromuscular Dysplasia Society of America, Inc. was founded on March 11, 2003 and received tax exempt status on October 7, 2003. FMDSA is a Delaware nonprofit corporation which is classified by the IRS as exempt under IRC Section 501(c)(3) and as a "public charity" under IRC Section 509. Donations from individuals and corporations are tax deductible to the extent permitted by law.


The topic and the website are pretty dry and boring. Until you realize you have “it.”

From the website:

Fibromuscular Dysplasia, commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur.  If  narrowing or a tear causes a decrease in blood flow through the artery, symptoms may result. Many people with FMD do not have any symptoms or signs on physical examination and are diagnosed by accident during a radiology scan for another problem.

And further:

The cause of FMD is not yet known, but several theories have been suggested. A number of case reports in the literature have identified the disease in multiple members of the same family including twins. As a result, it is felt that there may be a genetic cause.  However, a relative may have different artery involvement, different disease severity, or not develop FMD at all. In fact, most individuals with FMD  do not have a family member who also has the disease. Among some individuals with FMD, there is a family history of other vascular problems, such as blood vessel aneurysms.

And more:

FMD of Carotid Arteries: 
                                                            
Torn carotid artery dissection
·        Bruit (noise) heard in neck with stethoscope                    
·        Swooshing sound in ear
·       Ringing of the ears
·       Vertigo (room spinning)
·       Dizziness
·       Headache
·       Transient ischemic attack
·       Stroke (I had a stroke)
·       Neck pain
·       Horner's syndrome

·        Dissection (I had a dissection)

A person with severe carotid FMD causing severe narrowing or a tear in the carotid or vertebral artery may have neurologic symptoms involving the facial nerves (drooping of the eye lid, unequal size of the pupils, for example), stroke, or transient ischemic attack. People with carotid FMD have a higher risk for aneurysms of the arteries in the brain (intracranial aneurysms). Bleeding in the brain (intracranial hemorrhage) may occur if an aneurysm ruptures, and it is important to identify and treat brain aneurysms early to prevent this.

Research shows that the condition affects women (90%) more than men (10%). Research also shows that the FMD usually manifests itself when people are about 50 years old. My 
strokes happened when I was 50.

More info from the website:

THERE IS NO CURE FOR FMD. Treatments are focused on managing symptoms and complications of FMD, including high blood pressure and headaches.  Antiplatelet medications, such as aspirin, may be prescribed along with medications to treat high blood pressure (anti-hypertensives).  Many patients with FMD suffer from headaches, and a number of medications are available to help control and prevent headaches. 

From the American Heart and Stroke Association:

·       Fortunately, less than 7 percent of patients suffer from a stroke on initial presentation. However, about one in five FMD patients has an arterial aneurysm, and one in five has experienced an arterial dissection. Because of this, imaging is now recommended from the head to the pelvis for every patient with FMD to exclude the presence of an aneurysm.
·        There is still no known cause or cure for FMD and no standardization for evaluating and treating patients with this disease.

So, is the prognosis for me?
Dunham Brain Scan

Prognosis for FMD The prognosis for patients who have fibromuscular dysplasia depends on the severity of the condition and complications that develop. Many patients can be successfully treated. In some cases, complications of fibromuscular dysplasia result in severe disability or death.

In other words, “it depends.”

I am in tune with my body and my brain.  Every pain and headache causes me to worry. A different headache in a new place makes me worry. I watch the signs but every stroke is different. It this headache new or am I just a worrywart?

It is a dilemma. Everyday. I will just take another pill…..

3 comments:

Unknown said...

My husband was just diagnosed with fmd in the ER after a CT scan with angiography. The ER doc did not make it seem like a big deal and just said to follow up with his PCP. After reading internet stories we are terrified. Any words for a worried couple? How worried do we need to be?

Greenidgirl1977 said...

My husband was just diagnosed with fmd in the ER after a CT scan with angiography. The ER doc did not make it seem like a big deal and just said to follow up with his PCP. After reading internet stories we are terrified. Any words for a worried couple? How worried do we need to be?

Mark Dunham said...

Get a second opinion!!!!