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Fibromuscular Dysplasia (FMD) (Dr. Gornik and Pam Mace RN - FMDSA - 12/13/12)

Heather Gornik, MD Cardiologist and Vascular Medicine Specialist,
Robert and Suzanne Tomsich Department of Cardiovascular Medicine,
Sections of Clinical Cardiology and Vascular Medicine

Thursday, December 13, 2012 - Noon

Description

Fibromuscular dysplasia (FMD) is an uncommon disorder more often found in women between ages 40 and 60, but may also occur in children and the elderly. It can be difficult to diagnose, but while there isn't a cure, it can be treated effectively. Heather Gornik, MD, Medical Director of the Non-Invasive Vascular Laboratory of the Heart and Vascular Institute and Pam Mace RN, Director of FMDSA answers your questions.

More Information


Diagnostic Testing for FMD

scottie: My cardiologist has suggested I have a coronary CT angio to check for coronary FMD because I have been experiencing chest pains. I have carotid, vertebral, subclavian and renal FMD with 2 dissections in the neck vessels and an aneurysm. Could you please tell me how useful/effective coronary CT angio (venous dye test) is in detecting FMD? Could you also indicate to me how much radiation exposure it gives? I have read that the radiation exposure with this test is high. Thank you for your response.

Dr__Gornik: Dear Scottie: FMD can involve the coronary arteries, but this is very uncommon in my experience. The most common manifestation of coronary FMD seems to be a spontaneous coronary artery dissection (again rare) presenting with sudden acute chest pain. It would be very, very unlikely for chronic chest pain to be due to coronary FMD. We don’t have any data on the accuracy of coronary CTA for diagnosis of coronary FMD; the gold standard for diagnosing this is angiography. Yes, radiation exposure is significant with a CT scan, but the amount of radiation varies depending on the equipment used (e.g., more modern scanners expose patients to less radiation). That being said, there may be certain cases where a test like a coronary CTA may be appropriate. We just need more data here. I also think a stress test would be a good place to start.

jkasper: Do you annually check renal and carotid arteries for patients with FMD? And I have problems in both so when having an MRA would you check both at the same time or have them done separately?

Dr__Gornik: The surveillance protocol for FMD really varies by clinical center. In general, in my carotid and renal FMD patients I do reimage every year, though some patients need more frequent imaging. Other considerations are what type of testing is best at your center; we follow with ultrasound in many cases, but in some cases, MRA or CTA is done. The vessels inside the brain can't be seen with a duplex.

Carotid/Vertebral FMD

LeanneM: I am newly diagnosed with FMD. I suffered a stroke April 28, 2012. I have a carotid artery dissection. It has been 7 months and the dissection is not healed yet. I am taking Plavix and Ecotrin. My question is...how long on average does it take for a dissection of an FMD patient to heal?

Dr__Gornik: Thanks for the question. I am sorry to hear about your dissection and stroke. Carotid/vertebral dissections are unpredictable. Some patients heal entirely and the vessel looks normal months after the dissection, some heal more slowly. In some cases, as the dissection heals a small out pouching forms in the vessel called a pseudoaneurysm. In some other cases of the dissection, the tear is so significant that the vessel occludes/blocks off entirely and never reopens. Fortunately, most patients after a dissection do continue to improve in terms of their symptoms regardless of the extent of healing of the dissection. In most cases, patients with dissection are followed with periodic CTA or MRA to monitor healing/repair.

Pam_Mace_RN: Most patients that I have spoken with typically heal from my understanding in around a year’s time although I am aware of cases - including mine - where the arteries did not heal - and an intervention was required.

Dr__Gornik: There are some cases where the dissection never heals completely, but the symptoms go away or stabilize, and we just follow. Many dissection patients are managed with medications and not intervention.

LindaW: Can a person still have carotid FMD even though it may not show up on imaging? I have constant neck pain and occasionally have seizure like episodes (horrible vibrations in my head).

Dr__Gornik: It depends on the imaging done. A study like a neck ultrasound could potentially miss FMD very high in the neck, inside the brain, or the vertebral arteries. CTA or MRA can get a more comprehensive view of the vessels to the brain, but the true “gold standard” test is invasive angiography (fortunately we don’t have to do this very often as other tests usually can help make the diagnosis). Seizure like episodes would be very unusual for FMD, though neck pain can happen. If you haven’t already, I suggest you be seen by a neurologist to be thoroughly evaluated.

jkasper: Do you do angioplasty on a carotid artery when the narrowing gets too bad?

Dr__Gornik: I am so glad you asked that question. Unlikely atherosclerotic disease of the carotids where we might fix a blockage with surgery or stent if the blockage is severe even if no symptoms, this is different for FMD. For carotid FMD, we don't recommend intervention unless it is causing clinically important symptoms. Most patients with carotid FMD on antiplatelet therapy can be managed with medications.

karen2525: I have right carotid artery FMD. What is the best way to be followed for this? How often do you see your patients? What tests do you do?

Dr__Gornik: Follow up is driven by symptoms, but I generally do an annual carotid duplex for isolated carotid FMD. Some patients with intracranial disease or dissections or vertebral disease may need to be followed by other tests, such as MRA.

Pam_Mace_RN: The majority of patients I speak with are evaluated annually especially those that cannot be seen at an FMD center.

FMDSISTA: I have FMD in both carotids with plaque as well. My father at two endarterectomies in his lifetime. Should I need this down the road, is it possible to do intervention for the plaque when FMD is present at suggested 80+ percent via ultrasound?

Dr__Gornik: Great question. Important to realize that FMD and plaque/atherosclerosis are different processes. We may do surgery/intervention for atherosclerosis that is causing severe narrowing even if no symptoms, but FMD is different. It is important to be evaluated by someone who knows the difference between the two. Sometimes there are tricky cases in older FMD patients who have both atherosclerosis blockages and FMD beading in the arteries.

combjockey: reason I asked was because I have had two or three dizzy spells over the last 6 months or so. sinus and ear issues were ruled out. my carotid arteries checked out good. is there some other place in my head they should be looking? My drs are nice but I live 100 mile round trip from them. I am due back in April. Should I ask them about it then or call sooner. angioplasty was in September. fyi I have been on BP meds since I was 13. I am 53 now and my bp has never been this good.

Dr__Gornik: I am afraid some of your question did not make it through, but it sounds as if you are asking about checking for cerebrovascular FMD. Ultrasound can rule out carotid involvement, but a CTA or MRA would be need to check for involvement of the vertebral arteries or brain arteries. If this has not been done, it might be worthwhile.

Renal Artery FMD

Franbh: If renal ultrasounds indicate 80% blockage in both renal arteries (FMD), but blood pressure is stable on medications, would anything other than annual monitoring (repeating ultrasounds) be recommended? One tends to feel like she is waiting on a ticking time-bomb, but then, if fairly asymptomatic, I would hesitate to have unnecessary procedures done. My main symptoms are tiredness, constant pulsatile tinnitus, and occasional headaches. Head CT scan is within normal range. Thank you for your help.

Dr__Gornik: Great question, and there are a few important points you raise. First of all, the % stenosis on an ultrasound exam or even a CT or angiogram is not necessarily accurate for FMD. The % stenosis parameters/criteria were designed for single lesions in the renal artery, such as occurs in atherosclerotic disease/blockages. In FMD we have the “string of beads” or areas of narrowing and dilatation in series, and determining the true degree of blockage is challenging. In some cases, the only way to know the degree of stenosis for sure is to see if there is a fall in pressure across the beads. This is done invasively during an angiogram.

Dr__Gornik: The other point you raise, is “does everyone with a renal string of beads need an angioplasty”. The answer is definitely “no”. For many patients with renal FMD with well controlled blood pressure and normal renal function, this can just be monitored. I think angioplasty is reasonable though if blood pressure is difficult to control, if a patient has difficulty tolerating blood pressure medications or if blood pressure is of recent onset and the patient does not have a lot of other risk factors for high blood pressure (i.e., younger age, normal body weight, normal body weight).

Dr__Gornik: I am sorry to hear you feel like a “ticking time bomb”! While FMD is a significant vascular condition, most of my patients do very well once we get the symptoms under control, and in my experience this is NOT a disorder that seems to shorten the life span.

FranH: If renal ultrasounds indicate 80% blockage in both renal arteries (due to FMD), but blood pressure is stable on medications, would anything other than close monitoring be recommended? One tends to feel like she is waiting on a ticking time-bomb, but then, if fairly asymptomatic, I would hesitate to have unnecessary procedures done. My main symptoms are tiredness, pulsatile tinnitus (constant) and occasional headaches. Head CT scan is within normal ranges.

Dr__Gornik: Answered above.

georgiaK: I have bilateral renal stenosis that was successfully treated with angioplasty last year. Since then I have not had any symptoms such as high blood pressure. I am wondering if the stenosis will reoccur or if it will go to other arteries. Is there anything I can do to prevent this?

Dr__Gornik: The literature suggests a ~ 25% re-narrowing rate after angioplasty so good clinical follow up and surveillance imaging will be important. Usually FMD doesn't "grow" in new arteries over a short period of time. IF we find FMD in other areas, it's usually because it hadn't been checked before.

JanetG: was diagnosed with FMD 15 yrs ago--had successful renal artery angioplasty and stent in SMA 1 yr ago. Now have scar tissue at that site (SMA) --what is now preferred treatment at that site. What symptoms besides pain after eating should I anticipate and when should they go back in with more angioplasty??

Dr__Gornik: If re-narrowing is not causing symptoms and is just a finding on an imaging study, I definitely would not recommend interventional treatment. Look out for abdominal pain after eating or weight loss.

MaryD: I was just diagnosed with Renal FMD and was told treatment would begin with blood pressure meds however there was no change in the meds I took before the diagnosis. I take losartan, amlodipine and simvastatin along with 81 mg aspirin. (plus meds for other non-related conditions). Shouldn't this new diagnosis require an increase or change in some meds?

Dr__Gornik: It's not so much the number of medications, but the control of BP. Goal BP is < 140/90 and ideally < 130/80 if possible. an ARB such as losartant is a good choice for renal FMD and a calcium channel blocker like amlodipine is also acceptable. There is no specific medication for FMD treatment.

btk: If one is diagnosed with FMD, has Blood Pressure already under control due to meds; is there any other course of action you would recommend?

Dr__Gornik: Periodic imaging, such as a renal ultrasound. I also now recommend that at least once we check all of the other vessels for FMD and silent aneurysms, including brain, carotids, aorta, and renal and mesenteric arteries. At our center this is usually done with MRI based tests.

combjockey: I have right renal artery fmd which was treated with angioplasty and responded great. bp has returned to almost normal. what are the chances of this returning? they checked my other major arteries and they are all clear.

Dr__Gornik: See above. Renarrowing rate ~ 25% in the literature. FMD is unlikely to rapidly grow in new arteries once disease has already been ruled out.

Pam_Mace_RN: I am aware of patients who received multiple procedures. Some of this may be physician dependent. There are some good stories on our website of other patients who have had to have multiple procedures but are doing very well.

NPerry: What is your experience in renal angioplasty produced great results...does it need to be repeated?

Dr__Gornik: It depends on how likely it was that FMD was the only cause of the high blood pressure. Patient with longstanding high blood pressure, who are overweight, who have diabetes, who are older are less likely to have a "cure" with angioplasty.

jkasper: Does the narrowing with FMD cause the kidneys to shrink?

Dr__Gornik: In general, it’s only very severe narrowings or more likely total blockages of the renal arteries that lead to kidney “atrophy” or shrinkage. Renal shrinkage/atrophy is generally only seen when the renal artery is totally blocked, or near totally blocked, or when there has been an infarction of the kidney due to total blockage of a kidney artery branch from either a dissection or thrombus. Sometimes renal atrophy can also occur from things other than renal artery blockages, such as urological abnormalities/chronic renal obstruction. In most cases of renal FMD, the kidney does not shrink.

Mesenteric FMD

NPerry: In patients with mesenteric and celiac FMD when and what procedure is recommended?

Dr__Gornik: Good question, but first thing is is the celiac/mesenteric disease causing symptoms. If there is just beading or even narrowing there and no symptoms (weight loss, pain after eating), we would just follow this and treat with an antiplatelet agent. Angioplasty or surgery can be considered if a patient has severe mesenteric ischemia --- pain after eating and weight loss. Again, theme of the hour... for FMD we intervene for symptoms rather than beading or blockages.. and many patients can be managed with just medications.

Iliac FMD

LindaW: Can you also have iliac FMD? Can the symptoms be painful legs and feet after sitting for long periods? Once I have walked around for 3-5 minutes the pain subsides. I have this pain when driving long distances, sitting at my computer or sitting in a restaurant/meeting.

Dr__Gornik: Yes, FMD can involve the iliac arteries, typically the external iliac arteries, and it can cause leg pain, which is known as claudication, as well as other leg pains. Usually leg pains due to iliac FMD actually get WORSE with walking and improve with rest, so your symptoms seem atypical. I would get checked out for other vascular causes of leg pain, such as vein disease/varicose veins/venous insufficiency and also non vascular causes too, including spine/back problems and arthritis.

Pam_Mace_RN: I agree with Dr. Gornik.

Coronary Artery FMD

Scottie: My cardiologist has suggested I have a coronary CT angio to check for coronary FMD because I have been experiencing chest pains. I have carotid, vertebral, subclavian and renal FMD with 2 dissections in the neck vessels and an aneurysm. Could you please tell me how useful/effective coronary CT angio (venous dye test) is in detecting FMD? Could you also indicate to me how much radiation exposure it gives. I have read that the radiation exposure with this test is high. Thank you for your response.

Dear Scottie: FMD can involve the coronary arteries, but this is very uncommon in my experience. The most common manifestation of coronary FMD seems to be a spontaneous coronary artery dissection (again rare) presenting with sudden acute chest pain. It would be very, very unlikely for chronic chest pain to be due to coronary FMD. We don’t have any data on the accuracy of coronary CTA for diagnosis of coronary FMD; the gold standard for diagnosing this is angiography. Yes, radiation exposure is significant with a CT scan, but the amount of radiation varies depending on the equipment used (e.g.,. more modern scanners expose patients to less radiation). That being said, there may be certain cases where a test like a coronary CTA may be appropriate. We just need more data here. I also think a stress test would be a good place to start.

scottie I had a question about coronary FMD and the accuracy of CT coronary angio with venous dye, as weighed up against the radiation exposure. I have chest pain at times and have been seen by a cardiologist who has recommended this test. I am not near any FMD specialist centres - in the UK.

Dear Scottie. Please see answer re: coronary FMD above. We don’t have any good data yet on CTA versus traditional angio for assessment of coronary FMD, but at experienced centers that do a lot of coronary CTA this seems reasonable. In general, though I would emphasize that coronary FMD seems to be very uncommon among our FMD patients. It does not usually present with chest pain that is chronic, but can sometimes present with a coronary dissection.

FMD Multiple Locations

kathleen: I have renal and carotid FMD. I am on 5 BP pills. I had an angioplasty 4 years ago and have yearly MRI?MRA's of my brain and carotid arteries. My blood pressure is good but I know that I am on a heavy dose of BP meds. Is it better to continue on all these meds or better to have another angioplasty to see if my BP would improve. My kidney and liver functions are good.

Dr__Gornik: Five blood pressure medications is a lot, and I do think angiography should at least be considered. You should be evaluated by someone expert in renal FMD. A hypertension nephrologist may also be helpful. In some cases, if BP has been high for a long time, even if there is renal FMD present, angioplasty may not cure high blood pressure, but may help control things a bit better.

Kay58: Went to one-year check-up and doctor seems most interested in my renal FMD, but it's my carotid FMD that worries me the most. He says the blood flow looks good there. Can he tell this with only an ultrasound?

Dr__Gornik: For carotid and vertebral FMD we are really guided by symptoms rather than any finding on an ultrasound scan. Most patients with carotid FMD do very well over time with a low likelihood of a "bad event" once aneurysms have been ruled out and the patient is on antiplatelet therapy.

FMD and Other Conditions (Connective Tissue Disorders; Vasculitis)

osl2410: Can you have a connective tissue disorder such as Marfan and FMD? I have had aorta surgery in the past for Marfan dissected aorta and now I am having head aches and feeling the whooshing sounds in my ears that some have reported with FMD. Going in for CTA next week.

Dr__Gornik: This is a very timely question. Many of us in the FMD field think that FMD is part of a broader vascular disorder that in some patients may include aortic disease or a family member with aortic disease. That being said, we don't have genetic tests for the "FMD gene" like we do for Marfan and other disorders. This is an active area of research in the FMD field. WE recently published an article in Vascular Medicine on low yield of testing for things like Marfans in FMD patients --- need FMD specific tests.

Pam_Mace_RN: I am aware of a few people who went through testing for other genetic testing for conditions such as Marfan, Ehlers Danlos and the majority tested negative. I am aware of a few people who have been positive for other genetic disorders.

Dr__Gornik: I think this discussion emphasizes the importance of making sure FMD is the right diagnosis in each case. First question I ask myself in FMD clinic is... DOES OUR PATIENT REALLY HAVE FMD? and not another vascular problem that can mimic/overlap with it.

charlotteL: I have been treated for vasculitis for sometime with steroids, etc. - main symptom is headaches, sometimes blurred vision, tired. There has always been some question regarding my diagnosis. I have one doctor who says that he doesn't believe it is vasculitis. Do you think I should be worked up for FMD? What would be the next steps. I see a rheumatologist for the vasculitis.

Dr__Gornik: This fits in with the discussion above about things that can be similar to FMD such as other connective tissue disorders, and yes, vasculitis is on this list. Important difference though is that FMD is non inflammatory and lesions usually look different than vasculitis.

FMD Symptoms

scottie: I have FMD in multiple sites -neck vessels and renals and I have recently been diagnosed with subclavian occlusion in the proximal segment of the left artery. My left axillary artery is patent with pulsatile flow, as confirmed by MRA and duplex. I have 2 questions regarding this. Firstly, could proximal subclavian occlusion cause unilateral neck pain on that same side? Secondly, would ballooning of this artery be feasible or is the site too risky for bleeding problems when it is proximal (in the chest area) ? Thanks for your help with this.

Dr__Gornik: It’s hard to assess your specific situation without examining you and reviewing the imaging. Subclavian blockage can happen in the setting of FMD, but it is somewhat uncommon. I would want to of course make sure FMD is the correct diagnosis and there is not another or a second vascular problem, such as atherosclerosis affecting the blood vessels too. Subclavian artery blockages/occlusion can cause arm pain, but generally its arm pain with exertion/activity. A blockage doesn’t need to be treated in all cases; only if it is causing severe symptoms such as pain in the arm/hand with activity or loss of function. If you’ve not been thoroughly evaluated by a vascular specialist with experience in FMD, I would recommend this.

Joanie333: I have had pulsatile tinnitus for a year and finally had a carotid angiogram which showed mild fibromuscular dysplasia of the mid cervical portion of the internal carotid arteries bilaterally causing no significant stenosis. Could the pulsatile tinnitus be caused by FMD? Do I need follow up? My neuro-otologist ordered the angiogram. If so, where should I go for follow re this diagnosis. I live in Louisiana. Thank you, Joanie.

Dr__Gornik: Dear Joanie, pulsatile tinnitus is one of the most common symptoms in our carotid FMD patients, even if the FMD blockages are not severe. This is a really annoying symptom. We have done some work with our audiology group to try behavioral or device maneuvers to help with this.

Pam_Mace_RN: You may also want to check out whooshers.com

Pam_Mace_RN: She has some very good articles and information on pulsatile tinnitus and she will also be speaking at the FMDSA meeting in May.

Ronni: Hello everyone, just wanted to know if anything new has come up about pulsatile tinnitus as I hear bees in my right ear and pulsatile tinnitus in the other. Thanks Pam and Dr. Gornik for all you do for all of us.

Dr__Gornik: Hi Ronni (chat regular). WE are doing some work with our audiology team, but we don't have a "cure" for pulsatile tinnitus yet. Sorry!

joanrsva: Unlike others in this chat, I have not been diagnosed with FMD. I do have two older sisters with it, and my mother, who has passed, also had it. I have had extensive testing because I have pulsatile tinnitus, but the results didn't show FMD. My question is: Do you have patients that only have positional pulsatile tinnitus? I can hear mine when I stand up, stretch why lying down, and with exertion. I also get a very odd symptom when I've been driving and get out of the car. My head feels full of pressure and it's as if my head is pulsing, as well as, my right ear.

Dr__Gornik: Tinnitus can vary depending on body position, ambient noise, and patient activity. If you haven't already, I would definitely see an ENT doctor to review your symptoms.

RLMSLL: Last week I was diagnosed with FMD from a cerebral angiogram. My left ear objective pulsatile tinnitus symptoms initiated after an airplane flight. The flight also caused a blocked Eustachian tube which cleared with medication after 1.5 weeks. On a flight six months later I wore pressure regulating ear plugs to help with pressure equalization, and also I took nasal sprays and decongestants. The ear plugs caused the area around my ear canal to become extremely sore and painful, and unfortunately my pulsatile tinnitus has increased in intensity and duration. The tinnitus symptoms have not diminished with time. For someone with FMD, what precautions can be taken to minimize the effects of airplane travel? Is the use of pressure regulated ear plugs not recommended for someone with FMD?

Dr__Gornik: Interesting question... you have us here at Cleveland Clinic thinking about this! I know the FMD was present long before you first really became aware of this problem, and I suspect it was more of the pressure/Eustachian tube issue that led to the unmasking of the pulsatile tinnitus and the diagnosis. We follow ~ 300 FMD patients here, and fortunately, I have not yet seen a case of air travel related vascular injury in an FMD patient. Talk to your ENT doc about the Eustachian tube issue and precautions from that POV... it's probably that rather than the FMD that is the culprit on the plane.

Ronni: Ronni here again, can you discuss balance issues with carotid FMD? My balance stinks and I'm falling occasionally. Thanks.

Dr__Gornik: I can't say I see this in a lot of patients. Would recommend you really be evaluated by a neurologist -- is this due to carotid or more likely vertebral FMD or is there something else going on like inner ear/vestibular problems, neuropathy, etc.

scottie: Vasospasm seems to be something that is noted on some FMD test reports and also by some patients themselves. Do you think vasospasm is more prevalent in FMD-affected arteries and, if so, are there any treatments or medications to help lessen their occurrence?

Dr__Gornik: Hi Scottie, vasospasm is very, very common, especially in women, so I am not sure it is related to FMD at all, just related to the fact that both occur in women.

LindaS: Hi Dr Gornik and Pam, I have FMD of iliacs and tibial arteries L more than R , along with other sites. I wondered if evaluation of registry information collected so far has shed any more light on symptoms of calf cramping and jumping at night. My symptoms are worse on the L than the R and have resorted to using an ace wrap at night with some relief. Was worked up for restless leg syndrome with no definitive cause of symptoms. Thank you, Linda.

Dr__Gornik: While FMD of the iliac (external iliac) arteries is reported, I have never seen a case of tibial artery FMD. I would want to be sure the FMD diagnosis is accurate. We have seen a few patients told they have leg FMD who in the end had something called standing waves in the legs, which is something that mimics FMD on an angiogram, but is actually a normal finding and not a disease process. Also, calf cramping/jumping at night are unusual for a vascular cause – I’d definitely want to review your images and also think it’s important that you have ankle-blood pressure tests done (ankle-brachial index) to confirm that there is a blood flow problem to the legs. Good luck!

Pam_Mace_RN: I have never heard of a patient being diagnosed with FMD in the tibial arteries. Maybe you should be reevaluated or get a second opinion about restless leg syndrome.

FMDMOMCANADA: I have FMD in my carotid arteries on both sides of my neck. Each time I have an orgasm I get very sharp pain in my neck and head. Sometimes it will cause numbness and tingling into my face and it feels as though my face is droopy. It is creating a problem for my husband and I as I anticipate the pain and I know that it affects our intimacy. Could this be a result of the FMD getting worse or a blockage? If not then what?? Please help. I am working on trying to save enough money to come to Cleveland as I am in Canada and not having any luck here at all.

Dr__Gornik: That's a really good question, and I thank you for raising this sensitive issue. Sometimes FMD and vascular related symptoms can worsen with things that change hemodynamics such as pulse and blood pressure as would occur during sex. I do think it is possible this is FMD related, but not absolutely so. I definitely think you need to be evaluated in an experienced center --- would want to make sure the carotid FMD is not so severe that there is limitation to blood flow to the brain contributing. Again, thanks for "putting this out there" as an important but not commonly discussed issue.

Pam_Mace_RN: I am not sure who you are being evaluated by - Dr. Chris Buller sees patients in Toronto and Dr. Jackie Saw is in Vancouver Canada. If you don't live close to these areas, please contact FMDSA as we have many patients in Canada - we can put you in contact with them to find out who their physicians are.

Pam_Mace_RN: When in doubt see a neurovascular specialist.

BeasNana: If my neck is hyperextended for any length of time, I become lightheaded, dizzzy, weak, diaporetic, speech is slured. I have FMD in 2 carotid arteries (aneurysm in both) and 1 vertebral artery. Could this be vasospasms?

Dr__Gornik: I don’t think this is vasospasm, but I would be concerned that you have having some minor/physiological compression of your arteries with certain head positions. This can be seen in FMD patients due to the beading and sometimes narrowing of the vessels and also the tortuosity/kinking/S-curving that is seen in the carotid and vertebral arteries. I would suggest discussing this with your FMD doctor or neurologist --- and would recommend you avoid neck hyperextension/things that make you feel dizzy.

FMD and Activity

dsm08: I was diagnosed with mild ICA in both left and right carotids. I recently started a job that requires a lot of bending over. On a few occasions I have had numbness going up both sides of my face, it lasts about an hour. Could this be related?

Dr__Gornik: If the FMD is mild, it would be unlikely to be causing positional numbness/dizziness, but I would suggest that you be evaluated by a knowledgeable FMD physician, perhaps a cerebrovascular neurologist.

Franbh: I have noticed some dizziness while doing certain Yoga positions, such as turning head sharply in one direction while looking upward. I do have a diagnosis of Carotid FMD. Could this explain the dizziness? Also, I have tried to avoid positions which put pressure on the head, such as hanging the upper body forward (and downward). This seems to create some head discomfort and a "hot" sensation in the head, which is a concern to me, knowing that I have FMD. Am I being overly cautious, or should I listen to my body?

Dr__Gornik: It's definitely possible that the beading/narrowing of carotid/vertebral FMD, as well as the "tortuosity" of vessels could cause dizziness with certain positions of the head and neck. This has been reported. Definitely listen to your body... and discuss this with your doctor.

Pam_Mace_RN: I always tell patients to listen to their body. The way I see it your body is responding to something and triggering the dizziness so if it were me I would stop those positions triggering the dizziness.

FMD and Pregnancy

carolann: My 26 year old daughter was diagnosed with FMD at the end of October. She is 15 weeks pregnant with her second child and her blood pressure was sky high. They hospitalized her and diagnosed her with FMD. She is taking Methyldopa 500 mg 4 x a day and Labetalol hcl 200 mg 3 x a day. She was told after the baby is delivered in June she would have to have two surgeries to put stents in both arteries to her kidneys. Do you feel this is the proper treatment for her?

Dr__Gornik: Dear Carolann. I am sorry to hear about your daughter's difficulties. We would need to really see her to evaluate things. I agree with trying to manage blood pressure medically during the pregnancy if possible, but she really should be evaluated in an experienced center. For most renal FMD cases, we can often do angioplasty alone, but sometimes stents are needed.

FMD and Hormones

CindyCA: As a woman with FMD are there any implications for use of birth control pills or hormones? Any increased risk?

Dr__Gornik: unfortunately unknown at this time. We think there may be some hormonal influence given that < 9/10 FMD patients are female, but literature on OCPs and other hormone exposures has not shed light.

Dr__Gornik: For your specific situation, talk to your doctor about your FMD, vessels involved, stroke risk, blood pressure, to determine if you can be on OCPs.

Pam_Mace_RN: I agree with Dr. Gornik about speaking with your physician about your individual medical history. I do know patients who have been put on low dose hormones, although there is no literature to support this and many doctors are against this.

FMD and Medications

nutzy: there are some new drugs approved on the last time?

Dr__Gornik: We have no specific medications for use in FMD. Medical therapy for FMD patients usually includes blood pressure medications and antiplatelet therapy such as aspirin.

FMD and Diet

Zebra101: any diet restrictions associated with fmd?

Dr__Gornik: I wish I could say there was something dietary that could be done to help manage FMD, but there is no evidence that FMD is directly related to diet. That being said a “heart healthy diet” is good for the blood vessels, blood pressure, and blood pressure and cardiovascular health in general. I generally recommend a diet rich in fruits and vegetables, low in animal fat, and with very little added salt. Maintaining a normal body weight and exercising regularly are good for vascular health too.

Familial FMD

joanrsva: JoanVa asks: Have there been cases of FMD beyond the mother / daughter, as in, a child of the daughter who has FMD?

Dr__Gornik: Yes, there are some cases of mothers and daughters with FMD, but in my own practice, these are very few. As discussed before, understanding familial FMD is an active area of research. I know Dr. Santhi Ganesh at University of Michigan is a genetics researcher who is pursuing this actively.

Pam_Mace_RN: I am aware of several cases of mothers and daughters with FMD - data from the registry has shown there is only a 7% familial FMD history. In the French study they show an 11% familial history.

Pam_Mace_RN: To find information on Dr. Santhi Ganesh's research or to participate - please go to www.fmdsa.org.

btk: I'm a stoke survivor, with FMD. I'm afraid that my son (9 years old) also has FMD, what is the best method to diagnose FMD in Children? Who can do that? And how can we know which arteries are affected? (with me I had a carotid artery dissection)

Dr__Gornik: I will provide some reassurance I hope that pediatric FMD is very different from adult FMD and most commonly manifests with renal disease. More likely than not, your son does not have FMD, but would discuss this with his pediatrician. I generally do not screen children of adult FMD patients unless they have very compelling clinical symptoms.

joanrsva: I believe one of my sisters is in the registry, but I doubt the other one has registered, and since my mother died in 2005 she is certainly not in the registry.

Dr__Gornik: Currently the registry can only enroll confirmed FMD patients, but there are some studies for family members, such as Dr. Ganesh's study at Michigan, Dr. Kullo at Mayo Clinic, and our own biorepository at Cleveland Clinic which is collecting blood samples from FMD patients and 1st degree relatives (sister, parent, child). Thanks for your interest in FMD research!

Pam_Mace_RN: IF you go to the FMDSA website under research - all of these studies can be found.

FMD Research and Registry

FMDSISTA: I would like to thank you Dr. Gornik and Pam Mace for your dedication to finding answers about FMD. I understand the registry is gathering information about patient symptoms etc.....can you give a bit more detail about the importance of this registry and how it will benefit us and future generations? Thank you.

Dr__Gornik: Love the log on name! I have to say that my participation in the FMD registry is my most important activity outside of seeing patients at Cleveland Clinic.

Dr__Gornik: We just had our first publication in the leading publication Circulation on data on the first 447 patients in the registry and we have presented data on FMD at several international meetings.

Dr__Gornik: The registry helps raise awareness of FMD but has also helped change the way we think about this disease. For example that carotid and vertebral FMD is as common as renal and that 15 - 20% of FMD patients have an arterial aneurysm or dissection. These are major contributions to the scientific knowledge of FMD that came directly from our registry.

Dr__Gornik: I want to thank FMDSA for its critical financial support and thank all the patients who participate in the registry.

Pam_Mace_RN: In addition to Dr. Gornik's comments I would like to add that currently over 650 patients have participated. We have submitted multiple abstracts with additional new data and we hope to have them released by April of this year. The data will also be discussed at the annual meeting this May. Hopefully from the findings, we will be able to set protocols for treating the disease one day.

EliC: Pam: What % of FMDers are Male, Female and Children. Is there a racial component to FMD?

Pam_Mace_RN: 90-95% are female. There is a lot that is unknown about the epidemiology of FMD. These findings are what we have found on the registry. The data from the registry is affected by patient’s ability to be seen by one of these centers. I am aware of about 50 children with FMD and we have just recently added children to the registry. Outside of the US, the majority of patients contacting us are from Canada and Australia.

Dr__Gornik: There is so much we need to learn about FMD epidemiology --- I second that. WE really don't know the true prevalence of this disease in the general population. Is it rare.... is it as common as renal transplant donor angios suggest (5%). I think it's somewhere in between, but we need better data.

mimi: Is there any chance that FMD will receive national attention besides the wonderful articles in the medical journals. It would be great to see something in a women's magazine or a TV show like Dr. Oz?

Pam_Mace_RN: We are constantly looking for ways to raise national awareness of the disease. I know that Dr. Oz has been contacted many times. There was an article in Fitness Magazine called "A Moving Target" and a segment aired on mystery diagnosis in 2009. Last year the show House where they also mentioned FMD a possible diagnosis. If you visit the new section of our website, you can also see some other things that we have accomplished with the media. Feel free to write Dr. Oz :)

EliC: FMDSA has connected us FMDers INSPIRE web site and there are some fundraising ideas. One is to get a credit card that gives a % to FMD. What can we do to help research?

Pam_Mace_RN: Great question and thank you for working on ideas to help fundraise. We actually do have a credit card that can be found on our website and please feel free to contact me with any other ideas you may have. We support your spending :).

Where to be treated for FMD

RLMSLL: Are there any FMD medical experts in the Los Angeles area?

Pam_Mace_RN: The closest center is UC Davis. The contact information for the center can be found at www.fmdsa.org.

Cleveland_Clinic_Host: Pam, there have been several questions regarding the best place to be seen for FMD. What do you suggest?

Pam_Mace_RN: As a patient myself, I would suggest being seen at one of the participating registry centers that are listed on our website or at one of the hospitals that has an FMD program as these places tend to see more patients and have a better understanding of the disease. This will lead to better care for you as the patient. If you do not live near one of these centers, please contact us and we will help you find a physician in your area. We also have a list of support groups on our site from different sites and there is contact information for patients who live in these states that can also help you. Please visit FMDSA.org.

EliC: Dr. Gornik and Pam Mace are wonderful. They make a big difference in lives of FMDers! Thanks ladies.

Dr__Gornik: Thank you... you guys in the FMD world really keep me motivated.

Pam_Mace_RN: Thank you for your comments. The reason we are here and our success is because of all of you.

Conclusion

Cleveland_Clinic_Host: I'm sorry to say that our time is now over. Thank you again Dr. Gornik and Pam for taking the time to answer our questions.

Dr__Gornik: Another great chat... we were typing like the wind in here! Thanks for your interest in FMD and your motivating others to learn more about this disease. I really think FMD patients have had a huge impact in their advocacy. Happy Holidays and Healthy 2013 on behalf of our CCF team.

Pam_Mace_RN: We would like to thank Cleveland Clinic for inviting us here today and we would like to thank all of you for your support. We will be celebrating our 10 year anniversary soon and we have all of you to thank for our accomplishments.

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Reviewed: 12/12

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