Patient Stories

IN THEIR OWN WORDS, STORIES OF FMD DIAGNOSIS

“Mine was accidentally discovered. I went to the doctor for a breast mass and he heard the whooshing in my carotids and sent me to the cardiovascular surgeon. The strange thing is about five years prior to that a different doc heard it and sent me for an MRA but nothing was detected. Makes me wonder if they missed seeing it.”

“My daughter's was accidental. She was four years old and went to have her tonsils and adenoids removed, and her BP shot up really high. She was sent by ambulance to children's hospital, had renal angiogram done, and it was found that way.”

“I actually have the opposite problem of dangerously low blood pressure. My case is also different because I don’t have the ‘string of pearls.’ My FMD is in both internal carotid arteries and it looks like branches growing off to the sides of the main arteries. The doctor said it is ‘aneurysmal’ but not (yet) fully formed aneurysms. This was discovered after a recent complete collapse with horrible fatigue and headaches (that are now worsening), but it is still not known whether FMD is the cause of the collapse or was just a coincidental finding.”

“I had bruits for 22 years, but no one could figure out why until 2009. Prior to that, any tests I'd had done before never showed anything. The doctor listened to my femoral arteries and heard bruits. It wasn’t until 2009 that a Mayo Clinic Doctor actually found my FMD.”

“My primary care doctor heard the abnormal sound in my right carotid artery. She sent me to a vascular doctor, and he treated me as having stenosis due to what he thought was plaque. When the next ultrasound showed the distinctive FMD beads, he sent me for the angio which showed FMD in both carotids, renals and a brain aneurysm.”

“I had a bad headache that wouldn't go away. My doctor thought it was sinusitis, and gave me antibiotics and Imitrex. I woke one morning, still with throbbing headache then eye swollen. Then I noticed pupils were uneven, and went to see my doctor who said looks like Horner's syndrome. I was sent to neurologist two days later who sent me for imaging, where they found a total occlusion in left carotid. I drove to ER (DUH!), and was rushed into cath lab for angiogram where they saw the artery still dissecting during which time they also discovered both internals had FMD.”

“I had a subarachnoid hemorrhage followed by a stroke (or vice versa) four and a half years ago that left me almost dead and with brain damage...”

“After having kidney stones a few times and seeing two different doctors due to high blood pressure despite being on meds for years (neither could figure out why or the cause), I finally went to a doctor in Chicago who said, ‘I want to run one test; I think I know what it is.’ Sure enough, after two years of wondering what was wrong with me, one test, an MRI showed FMD in my renal arteries. I had an angioplasty and immediately my BP was normal. I’m still on meds and will watch since it is known to come back. I am so grateful to my doctor.”

“Mine was discovered by having uncontrollable high blood pressure. I think the highest was 220/120. After being treated and misdiagnosed for anxiety and blood pressure meds that weren't effective, my primary care doctor heard the bruit in my abdomen. Looking back, I believe I had the symptoms for many years. Thankfully, I was finally diagnosed before dying from an aneurysm or stroke… which happened to my mom.”

“Mine was due to symptoms of TIA-like events. I think my mom had undiagnosed FMD which led to successive and repeated TIA's and dementia—my biggest fear in this.”

“The string of beads was seen during a follow-up cerebral angiogram from having multiple dissections stented and an aneurysm coiled and then recoiled and stented.”

“Mine was accidental. After a week in the hospital with no explanation for my severe headache, Horner's syndrome, and neck pain...they were preparing to release me with diagnosis of migraine. An intern was going over my head shots and saw what looked like a dissection. They ordered more tests and found multiple bilateral internal carotid dissections. My actual doctor never told me it was FMD. Luckily, the intern did. Follow-up at Cleveland Clinic found it in my vertebrals and renals as well as the carotids. I should add that I had the headache (worst of my life) for six weeks before the diagnosis. I saw my local doctor about four times before I drove myself to Chicago and went to the emergency room. My doctor kept saying it must either be a migraine or sinus infection. Two weeks of antibiotics, and several different pain meds—I knew something was wrong, but the doctor wouldn't listen.”

“My daughter’s was discovered when she was 27, after a couple of years at a blood pressure clinic on various BP meds (not working). She eventually saw a young doctor (just out of training) who sent her for MRI and it showed up on that. The (old) consultant that she had been seeing wasn't happy at ‘the waste of money’ spent on the imaging and then he saw the ‘very rare’ FMD reported by the radiographer!”

“I was sent to a kidney specialist due to very high blood pressure and being on eight meds. Since I am diabetic, the specialist thought I may have kidney damage due to that. The ultrasound and CTA came back normal. The specialist wanted an angiogram done due to it being the gold standard, and that’s how the FMD was found.”

“Mine was discovered when I crashed on the table having a pin put in my ankle. The surgeon told my husband he thought I had FMD. It was confirmed on the first day of my second trimester when I had a renal plasty. I had pathological confirmation about a year later when a renal bypass failed. It was quite a whirlwind.”

“Visual disturbances followed by a week-long migraine two months in a row sent me to a neurologist who at the end of the exam listened to my carotids and told me, ‘You need to go to the hospital right now...there's no pulse in the right side of your neck.’ And so it began...”

“I had what I believe were multiple TIAs from the age of 15-25, and doctors just called them migraines. Finally went to the ER after symptoms lasted longer than usual, had an MRA, and got their attention. I went from having a bed in the hallway to the Neuro ICU in 2.5 seconds! One dissected carotid, the other up to 90 percent occluded due to FMD.”

“Mine was found after a TIA. I had slurred speech and left side weakness. This is unusual unless your speech is on the right side of your brain, which only 10 percent of the population has. An interventional radiologist found this rare and ordered a CT angiogram for the lower arteries and found the string of beads in my pericardial vertebras. There is nothing that can be done for this location because of location to spine and spinal cord. Only in a life threating situation would intervention be done. This is my greatest fear. After this finding, further Doppler ultrasounds were done, and I have right and left tortuous carotids and a rubber band like closing in my right renal artery.”

“I had high BP since my early twenties; it took two decades before I was diagnosed. What led to my diagnosis was dizziness, visual problems, abrupt inability to run distances... I have widespread FMD—renal, femoral, carotid... I also had severe abdominal pain for two decades with extensive work, but no one looked at my vascular system. When I was diagnosed with FMD, they finally saw the occlusion of the celiac artery. Funny how a bypass can take care of years of living with severe pain!”

“I've always had chronic chest pain...very athletic when "younger" ...running many miles, training for marathon, etc. One day, chest pain was really bad (I fell into bleachers)! My doctor did an EKG which was abnormal, referred to a cardiologist who heard bruit over right kidney, then sent me for an angiogram which showed aneurysms and FMD in renal arteries. One aneurysm was large enough to be removed at UC/San Francisco. I guess I was in my early 50s then. I had a grandfather who died from brain aneurysm and a sister who had an aortic aneurysm.”

“I had the worst pain I ever had in head and neck. I could describe the pain in the back of my head as like contractions. I had CT and they found aneurysm. During the coiling of my aneurysm two days later, they found the FMD.”

“I was exercising and felt a pop in the back of my neck followed by a pulsating in my neck and then terrible head/neck pain. Long story short...I landed in the hospital for 32 days and had a double stent put in my right carotid artery, four arterial dissections w/ multiple pseudoaneurysms.”

“Mine was discovered after a TIA with left-sided weakness and slurred speech. A CT angiogram was done that showed FMD in both pericranial vertebral arteries.”

“Mine was found after begging my GP to refer me to a nephrologist. Instead she kept changing or increasing my blood pressure meds. I finally took the bull by the horns, and had my Deputy Sheriff husband (in full uniform...gun toting and all) and he made the demand. A week later I had an appointment with a specialist near Cincinnati, Ohio. The very next day I was having balloon angioplasty on an 85 percent right renal (intimal) occlusion. But, the doctor never said anything more than to have annual angios done for the renal arteries. This was in 2005. I have a GP now who, even knowing I have FMD actually said to me 'so tell me again, what is FMD?' Needless to say, I have a new GP!”

“I was at Canada's Wonderland when I had chest pains. I believe it was a miracle that I didn't go on any rides, because two weeks before that I had a hernia fixed. I had chest pains all day then about 3 p.m. I asked for help. They took me to major hospital then transferred in the morning to have an angiogram where the doctor said I had suffered a heart attack, and he told me that I had a kink in my artery and fixed it with two stents. Two years later my cardiologist was at a conference and shared my story with another doctor and he wanted to see me. He was 95 percent sure it was FMD. Long story short, in Jan. 2012 he confirmed I have FMD in both renal and coronary arteries.”

“My BP continued to rise and the doctor wanted to add more meds. I was complaining of fatigue and just not feeling well. He also said I was depressed! I got angry and told him I am not depressed, I can't do what I normally do because of the symptoms, the symptoms were not depression. He said there is a test for my kidneys but he knew I didn't have a problem with my kidneys! I told him do the test. If nothing is there, I will take all his meds and the anti-depressant too. They did the test. The day after the test I was in the doctor office again, now I had pneumonia. He was very kind and gentle. I said I know it might be too soon, but did you get the test results on my kidneys? The tech doing the test wouldn't let me see the screen. He said we will talk about that, let’s take care of your pneumonia. That was when he said my artery was blocked, and that is why my BP spiked, I was tired, and my resistance was low. I was sent for an angioplasty and noticed the techs looking at each other like something was wrong. In recovery, the doctor came in, (my family was there), and said I had FMD.”

“Mine was found during an MRI for yearlong migraines in Dec. 2009. I obviously had it for many years before it was discovered. I had spent over a year not working due to daily migraine (dark, quiet house required). I had already undergone multiple CT scans etc. during that time—a relief to finally find out why I had the headache pain, blood pressure issues, whooshing, neck and chest pain, etc. (By the way, two doctors thought the whooshing was from a "heart murmur.") I underwent an angiogram, but they could not stent either carotid as one was already occluded and other not yet at stage to stent. I had gone to various neuros who seemed to think I was scamming for drugs or something before I insisted that my PCP do an MRI... I'm one of the lucky ones—I am back to work for now, although I had to change fields as I cannot think well enough to continue in accounting.”

HEATHER

I had high blood pressure (typically near 150/110) for nearly seven years. I'd been to several doctors, all of whom blamed my phantom family history and my typical college student diet of ramen, condensed soup, fast food, etc. (most of which I added salt to, so I was inclined to agree). I was put on several medications and drastically changed my diet (low sodium, gluten free, no sugar, no processed foods), and after three years, I still had high blood pressure. After moving to Raleigh, I finally established a primary care doctor, and he immediately suspected FMD, since I was so young and otherwise very healthy (good diet, no smoking, not overweight, great cholesterol). I was a little skeptical when he suggested a renal duplex ultrasound and explained this "rare" disease, but I'm beyond glad that someone did because angioplasty probably saved my life. I was looking at a lifetime of medications and eventual kidney failure / dialysis / heart attack, and now my blood pressure is better than it's ever been (117/67 yesterday!).

TIM

I’m a 43-year-old man with FMD of carotids, vertebral and renal arteries. One vertebral artery is 100 percent occluded. I have had multiple dissections in my other carotid and vertebral arteries. Prior to becoming symptomatic, I had a dream career in auditing (which I loved), was extremely active, worked out daily, etc.

In June 2010, I got what I thought was a right-sided migraine. It wouldn’t go away. Four weeks later, my right eye wouldn’t open all the way (Horner’s Syndrome). I went to the doctor who said it was probably a sinus infection. The antibiotics didn’t work, nor did multiple different pain medications. Nothing worked. The pain started to include the right side of my neck and extreme scalp sensitivity. After a week in the hospital, the doctors were preparing to release me on pain medication. Luckily an intern noticed what appeared to be a carotid dissection. More tests revealed multiple bilateral dissections of both ICA’s. More testing found the disease in my vertebrals and renals.

My health has continued to deteriorate. I suffer from extreme fatigue, headaches, lightheadedness, fainting, cognitive impairment, brain fog, vision disturbances, pains in my arms and legs, muscle and joint pain/stiffness, spine problems, finger and toe numbness, poor balance, and gait abnormalities. I’ve had at least 2 TIA’s. I’ve fallen (including down the stairs twice) due to fainting and balance problems. I cannot sleep through the night due to the pain. I can’t sit or stand for any significant amount of time due to the pain and fatigue. I lost my job due to the lifting restrictions associated with carotid/vertebral FMD and cognitive impairment.

JENNIFER

I am a 37-year-old mother of five children. I have suffered from complex migraines since I was in high school. When I was pregnant with my fifth child in 2011, I experienced the worst migraine I have ever had. I also experienced episodes of right-sided numbness that would resolve within a few minutes. I suffered for a week with the migraine before finally heading to the ER. This was only the second time in my life I had gone to the ER for a migraine, and it had been 20 years since my first visit.

After I went to the ER, my OB admitted me to the hospital. A neurologist was consulted, and an MRI was ordered. That MRI showed that both of my internal carotid arteries were occluded. CTA with contrast confirmed total occlusion of the internal carotid arteries just above the bifurcation. After that scan, my OB asked several specialists to look at my scans and consult, including a rheumatologist, neurosurgeon, vascular surgeon, and high risk OB. None of the doctors had a clear explanation for my scans. Extensive bloodwork was performed to rule out vasculitis. The neurosurgeon was the first to suggest this could possibly be fibromuscular dysplasia, but he was not certain.

My husband is friends with a pediatric neurologist who then put us in touch with the stroke center at University of California in Irvine. These doctors performed additional scans after I delivered that showed the occlusions in my internal carotids. Apparently my vertebral and external carotid arteries supply sufficient collateral flow to my brain. The doctors believe that either my arteries became occluded by the fibrous tissue that grows as a result of FMD or by bilateral dissections that gradually progressed to total occlusion.

My husband also found the FMDSA online, and that is how we learned about Dr. Laird at UC Davis. My hospitalization was in April of 2011, and my diagnosis was ultimately confirmed in July of 2011 at UC Davis by renal ultrasound that showed mild stenosis in my renal arteries. The stenosis is consistent with the typical beading of medial FMD. The velocity of blood flow changes in multiple locations along the arteries. They also confirmed there is no flow through my internal carotid arteries and ultrasound shows that the arteries are both atrophied beyond the occlusion.

FMD affects my daily life more than it did before the headache that led to my diagnosis. Before that headache, I was generally healthy. I did suffer from complex migraines, but they were treatable. I would experience dizziness with the migraines or when my hormones were fluctuating due to pregnancy or menstruation. But my blood pressure was always perfect (110/70). I had five pregnancies with no complications (aside from the headache).

Now I deal with orthostatic hypotension on a daily basis. I also tire more easily than before the headache. I have to be much more careful to stay hydrated than I did before. I have been dealing with episodes of double vision, but brain scans show there are no aneurysms or fistulas, so at least the cause is not life threatening. But my blood pressure remains normal, and overall, I am amazingly healthy considering my diagnosis. My doctors have me take 81mg of aspirin daily. The plan at this point is to repeat scans annually.

Learning that I have FMD and bilateral occlusion of my internal carotids has completely changed my life. It was not long ago that I believed I was healthy and strong. Suddenly I have learned I am more fragile than I even knew. Before my diagnosis, the only doctor I consistently saw was my OB. It is challenging for me to learn to reach out to doctors when a new symptom arises and not just tough it out. I historically did not like to go to the doctor, and the few doctors that I spoke with about my migraines over the years provided little help. I have had to learn to trust doctors now that I have FMD. But I do feel blessed to be alive.

My hope is that my story will help others understand what it is like for FMD patients.

REBECCA (as told by her mother Carol)

In 2004, at age 26 and in her final year at university, Rebecca became hypertensive (typically 200/100) and was prescribed Atenolol in an attempt to reduce her blood pressure.

The following year a MRI contrast enhanced MRA Renals Report revealed that Rebecca's kidneys looked normal on routine 2D images, but on contrast enhanced images, there was a long tight stensosis of the right renal artery. The scan showed complete occlusion of both the celiac axis and the superior mesenteric arteries just beyond their origins. "Blood supply to the foregut and organs is maintained by the inferior mesenteric artery through 'the wandering artery of Drummond,'" the report stated. The right external iliac artery also was tightly stenosed.

In 2006, angioplasty was performed. "The right renal artery was crossed without difficulty and the lesion was dilated using a 5mm balloon with an excellent morphological result," read the post surgical report. "It was decided not to interfere with the mesenteric or iliac vessels as these were causing no symptoms but should circumstances change theses would both be amenable to angioplasty.”

However, Rebecca suffered a massive stroke four hours after angioplasty. The following nine months were spent in a rehabilitation unit learning to walk, talk, wash, dress etc. Rebecca now has aphasia, dyspraxia, homonymous hemianopia, severe left side weakness, epilepsy, severe stomach pains, and due to fatigue, she has frequent pyjama days.

Finding a team of doctors wasn't easy when even the vascular surgeon turned to the internet to try to find out about FMD... and even then, I still knew more than he did! However, we have a lovely team of doctors now who know something of FMD and at least take an interest!

Despite everything Rebecca remains positive about life in general, enjoying living life as full as possible. She enjoys reading (which she had to relearn after her stroke), horse riding, and shopping (mostly shoes!).

MEET OUR BLOG AUTHORS

AfternoonNapper, founder of FMD Chat, is a writer, reader, editor, teacher, cynic, comic noir, pragmatist, gardener, traveler, animal lover, wife, only child, foodie, sports fan prone to afternoon naps (or just naps in general). She lives with a long medical history including triple bypass surgery, a stroke that left her without pain or temperature sensation on her right side, loss of her left kidney, four cerebral aneurysms, a ruptured stomach, and an overall diagnosis of Intimal Fibromuscular Dysplasia, which is a rare type of the rare disease. She advocates for FMD awareness and engaging patients in their own healthcare.

FortunatelyFunny is a mother of two boys, a wife, a shoe lover, a co-worker, a runner, a yoga lover. She has a history of TIA/Stroke, pseudoaneurysms, and at least three dissections in her carotid and vertebral arteries. She was diagnosed with fibromuscular dysplasia (FMD) in 2010. She also suffers from Chiari Malformation and a resulting Syringomyelia, which are brain and spine abnormalities. She experiences frequent pain and dizziness, but "looks completely 'normal' and would fool the best of 'em."

Heather Craven is partner to Matt and mother to their three children, Loren, Cassidy, and Devon. Matt was diagnosed with FMD in November of 2010 after experiencing a seizure due to a stroke. His left renal artery, carotid arteries, and vertebral artery are affected. Heather writes from an observer's point of view, chronicling what she calls a "bizarre illness that is sometimes a silent partner and at other times a screaming beast of demands."

JustJennifer is a teacher, writer, and mother of two. When a collapse landed her in the hospital, she mistakenly was diagnosed as having a dissected internal carotid artery. Further tests revealed abnormalities on both carotid arteries resembling aneurysms, and this led to her FMD diagnosis. JustJennifer is now on a double mission, determined both to understand this disease that still baffles doctors, and to support others with the same rare, frightening, and often frustrating diagnosis.

MonkeyMugs was diagnosed with fibromuscular dysplasia in the upper internal carotid arteries and renal arteries in November 2011. Her family has a history of early coronary artery disease as well as diseases of the circulatory system. After visiting numerous specialists, MonkeyMugs feels her best source of information regarding FMD is peer-to-peer on sites such as FMD Chat.

WV Peaches had been suffering for over a year with daily migraine, and avoided sunlight, noise and bright lights. The headaches continued to the point she could not work outside the home for about 14 months. In November 2009 with a seizure that caused uncontrolled jerking of her body for about 30 minutes with intermittent tremors for the next few hours. Tests were inconclusive. She was experiencing blood pressure irregularities, so her primary care doctor ordered a MRI of the head and neck, which showed FMD in both carotid arteries.