Fibromuscular Dysplasia (FMD) - Dr Heather Gornik&Pam Mace RN President FMDSA
June 2, 2010
Heather Gornik, MD
Robert and Suzanne Tomsich Department of Cardiovascular Medicine: Clinical Cardiology and Vascular Medicine Medical Director, Non-Invasive Vascular Laboratory
Fibromuscular dysplasia (FMD) is a rare disorder characterized by abnormal cellular growth in the walls of medium and large arteries. FMD is most common in women between ages 30 and 50, but may also occur in children and the elderly. Treatment for FMD varies and can be tailored to treat different severities. Dr. Heather Gornik and Special Guest, Pamela Mace, RN, President FMDSA, answer your questions about FMD.
Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Heather Gornik. We also have special guest Pamela Mace, RN, who is the executive director of FMDA. We are thrilled to have both here today for this chat, so thank you Dr. Gornik and Pam for joining us. Let’s begin with the questions.
Dr__Gornik: Thank you for having me today.
Arteries and FMD
Gina: 3 questions - One is - I'm 36 f and was diagnosed w/dissection Oct 09 - I've had my carotid's, brain and kidneys looked at - I have bilat internal carotid dissections with fmd. I would like to have my other limbs checked - do they check limbs by ultrasound or is another ct w/dye needed to search other arteries? I feel like I've always had circulation problems in those areas and am suspect. 2nd ? for w chat - have we ruled out the possibility of environmental conditions contributing to this disease? Such as birth control pills, or other medications or toxins? What about deficiencies - are we finding many patients with low iron or blood count or low potassium? 3 ?- is there a link between circulation issues and FMD? Is there a connection between hormones, circulation and this? And thanks for the Cleveland seminar it was great - Gina
Dr__Gornik: Dear Gina. Many good questions. In response to your question in terms of FMD in the limbs, FMD can involve the arteries to the arms (brachial arteries) and the legs (generally the external iliac arteries in the pelvis most commonly). In my practice, I start with a basic physical exam to screen for FMD in these vessels (listen for bruits over pulse, feel pulses). I check blood pressures in both arms to look for significant brachial artery narrowings. If I really suspect FMD of the legs, I would check an ankle-brachial index test, which measures blood pressures in the legs and tells us if there is severe narrowing and I may order an ultrasound study of the legs. Even if there is "beading" or FMD changes in the legs, this generally does not require any intervention.
Your second question is also a good one. There probably are both genetic and environmental factors that lead to FMD, including gender, possibly hormones, and perhaps mechanical factors (the right renal artery is more mobile than the left one and is more commonly affected by FMD). The FMD international patient registry should hopefully help identify some of these factors. Prior epidemiological studies looking at hormones and FMD (i.e., The birth control pill) have not clearly identified a link, but the study was small. I would say these are definitely areas of uncertainty which need more research.
Finally for question three, I know of no link between iron deficiency and FMD, other than the fact that iron deficiency anemia is common in women (due to menstruation) and FMD is also more common in women. Low potassium could be related to FMD if there is significant renal artery narrowing – this leads the kidneys to produce a hormone called aldosterone which can cause the kidneys to waste potassium in the urine.
Mossy: Hello, I have issues in carotids and right renal. Apparently collateral veins have formed in carotids because my Doctor isn't concerned with the amount of blockage. How well do the collaterals stand up over time. Also, with renal – there is mention of "flank" pain. I have pain in the front of my body, somewhat close to the ovaries. Is this also considered "flank" pain? Mossy
Dr__Gornik: Dear Mossy - collateral arteries usually only develop if a vessel is severely narrowed or totally blocked such as after a tear or dissection of a vessel. Whether or not the collaterals are doing their job, depends on your symptoms - this is where a very careful history and physical by your doctor is very important.
As for the flank pain - we generally see this in renal FMD, primarily when there is a dissection or aneurysm and not for just a blockage. I would be sure other problems are ruled out, such as gynecological problems—specifically problems with your ovaries. Please see your OB-GYN for a thorough exam.
Kay: My husband had a coiling of the artery in the pancreas and has the renal artery string of beads and an iliac aneurysm which are being monitored with ultrasound. What is the life expectancy of people with this disorder? Do the dysplasias continue to grow and will new ones develop that are not there presently? Diagnosis: Fibromuscular Dysplasia - KAY
Dr__Gornik: Hi Kay, thanks for your question. I will say that your husband's symptoms are somewhat atypical for what we generally see with fibromuscular dysplasia (particularly the aneurysm near the pancreas and iliac aneurysm), so I would want to be sure that the diagnosis of FMD is accurate. There are other blood vessel disorders that can mimic or act like FMD, including connective tissue disorders, which are disorders of the blood vessel wall. Unfortunately, it is difficult to give you a sense of your husband's prognosis, as his case is unusual. I do think it would be very important to follow him closely, including periodic imaging studies of the blood vessels in the abdomen. I would also be sure that his entire aorta is imaged at some point (thoracic and abdominal aorta) to be sure there are no aneurysms in the aorta, which can be a potentially very serious problem.
Botha_C: My daughter has Intimal Fibromuscular Dysplasia and has had an aorta renal artery bypass using a vein from her leg. A few of her other arteries are also affected, and 2 have the same origin off the aorta. How many arteries are there in the body that can be affected? Is it possible for them all to be bypassed using her own veins? If this does become necessary, would she be clear of Intimal FMD? How long do veins last performing the work of an artery? If Intimal FMD is present in arteries to the brain or heart, can anything be done?
Dr__Gornik: Hi Colleen. Great to hear from you on the chat. In terms of intimal FMD, the management of a narrowing is still angioplasty, just like the typical medial type of FMD. As in your daughter's case, there are some situations in which angioplasty has failed and bypass surgery must be performed. Using a segment of the patient's own vein is generally the first choice, but there are also synthetic materials that can be used for bypass (such as Gore-Tex or PTFE or Dacron). Unfortunately, even if a bypass procedure is done, I would not say that the intimal FMD or medial FMD is "cured" or reversed. As of 2010, we don't have a cure for FMD – the angioplasty and bypass procedures (along with other procedures) are used to treat narrowings, dissections, or aneurysms and manage disease but not necessarily cure the disease. The key point that your questions highlight is that intimal type FMD tends to be a different disease process than most cases of medial FMD, and I am so sorry you and your daughter have struggled with this.
ShawnH: I have FMD in my SMA and celiac, as well as slight narrowing in my renal. So far, my carotids are fine. I have had 2 angioplasties on the SMA, the celiac is not treatable. I have gastroparesis from the lack of blood flow from the SMA, and still have constant abdominal pain & a limited diet. There is a question regarding my arcuate ligament. My vascular surgeon isn't convinced that the ligament could be causing pain. The ligament cross the SMA, or just the celiac?
Dr__Gornik: Hi Shawn. Thanks for a really good question. FMD in the mesenteric arteries is somewhat less common, as you know, than renal or carotid FMD. That being said, we definitely see patients with mesenteric FMD. You mention a condition called median arcuate compression. This is a very interesting "anatomic variant" where a ligament that connects the two parts of the diaphragm (the muscle that moves up and down when we breathe) intermittently compresses the celiac artery and yes, sometimes the SMA too. The celiac artery and SMA are very nearby in terms of their origins off of the aorta (often within millimeters), and there can be compression of both. Median arcuate compression of the abdominal vessels is very common, it is truly a variant of normal, but it can cause symptoms in some cases. What makes this diagnosis very tricky is that most patients with the compression of the celiac or SMA don't have any symptoms at all, so identifying the patient in whom the abdominal symptoms are due to median arcuate can be really tough. What also makes things tough is the fact it sounds like you have some FMD. I wish you good luck with this.
KarenG: FMD Is "tortuosity" with associated velocity changes on doppler any less (or more) serious than beading or physical stenosis that is visually apparent? are vascular anomalies benign? and are they typical for FMD'ers? why? thank you
Dr__Gornik: Great question Karen. Specialists in FMD, such as Dr. Olin, myself, and others, are recognizing that many FMD patients also seem to have "bendy" or "tortuous" vessels. It is too early right now to really tell you the significance of this finding and what it means in terms of prognosis, but it might be related to a blood vessel wall problem that perhaps leads to both the beading and the "bendiness." This is an ongoing area of research.
caitlynn: I have FMD bilaterally in my vertebrals, carotids (with 59% stenosis), renals and iliacs (with aneurysms on both). Is it unusual to have it in so many arteries and how concerned should I be regarding the carotid stenosis and the iliac aneurysms? Thanks!
Dr__Gornik: Hi Caitlynn - your pattern of disease is not uncommon. The iliac arteries and brachial arteries are the most common vessels affected after the carotids/vertebrals and renal arteries. You have what we call multi-vessel FMD. I see many patients in my practice that have FMD in a similar distribution as what you described and do very well. As Pam said, and I would like to emphasize, more important are your symptoms as to the severity of disease rather than how many beads in how many vessels.
Joanna: Hello, I was recently diagnosed with renal stenosis in left kidney by doppler, the Dr I was seeing then wanted to do a stent . I have since changed to a new Dr, and he feels going by the Doppler study alone that is consistent with FMD and is suggesting that at Ct angiogram be done to confirm with a balloon procedure as well. I guess my main questions are 1. Do I need a FMD specialist ? as I am now seeing a wonderful cardiologist who has only seen very few of these cases. what questions should I ask of the one doing procedure. Should my other arteries be checked before undergoing any procedures? Is there any chance that I would be Ok if nothing is done to open up the renal artery? I am very afraid, as my father had many renal procedures and nothing helped him, things just got worse, he had atherosclerosis, had ballooning, then renal bypass, which caused him leg amputation. These memories are making it so I am terrified of the angiogram w/balloon. And are there any lifestyle changes that can be made to stop this disease? Is it possible That I should consider coming to the Cleveland Clinic since there seems to be more being done there? Thank you so much for any response. JOANNA
Dr__Gornik: Dear Joanna. Thanks for your e-mail. First of all, it sounds as if you dad may not have had FMD, but rather another type of blood vessel disease (atherosclerosis). I understand you are worried. In terms of renal FMD, from my perspective, the most important thing in terms of doing an angiogram and/or angioplasty is being sure that it is necessary. Just having beading in an artery does not mean an angioplasty has to be done. However, if you have high blood pressure that is not controlled on many medications, if you just were diagnosed with high blood pressure, or if you can't tolerate your blood pressure medications, then an angiogram and angioplasty are reasonable. In most cases, balloon angioplasty alone can successfully treat FMD in experienced hands. We generally recommend not placing a stent unless necessary, but in some cases, a stent is necessary, such as a kidney artery dissection/tear or if angioplasty simply cannot open the blockage. Our interventional team uses an ultrasound catheter that is placed inside of the artery (called intravascular ultrasound or IVUS) to identify the webs that need to be ballooned and help guide the procedure. We would be delighted to see you here at Cleveland Clinic at any point.
In terms of checking other arteries in a patient with renal FMD, I would recommend a good physical exam, feeling your other pulses and listening for bruits, and a carotid ultrasound done in an experienced vascular lab. If you have carotid beading/FMD, then I would recommend an imaging study of your brain (for example an MRI) to look for brain aneurysms.
Jones_A: I have had hypertension for the past 14 years and only recently was diagnosed with severe narrowing of the right renal arteries due to FMD. Three weeks ago, angioplasty was performed successfully and my blood pressure has returned to normal. I have experienced panic/anxiety during the course of the 14 years and are wondering if this can be associated to my FMD and does this have anything to do with the hormone angiotension II. Many thanks for this webcast, I am based in Australia and this provides me with invaluable advice and information. Thank you so much.
Dr__Gornik: Very interesting story you present. I am glad to hear you had a successful angioplasty this many years after your high blood pressure was diagnosed. I wonder if your episodes of panic/anxiety were due to periods of high blood pressure. I know there is some recent research looking at neurohormones such as angiotensin II and panic attacks/anxiety, but I do not know of any specific association in renal FMD patients. Our group has stored some plasma and serum samples from patients with FMD, and we have discussed looking at specific hormones.
Zimbabe: I have FMD in my carotids, Renals and Exterior Illiacs ~had 2 renal angioplasties~ lowered the BP tremendously, but am finding if my bp gets in the 120's over 70's I am very dizzy and lightheaded. I seem to be very happy @130/80's. Question being is do we actually need to have a little higher BP to keep the flow to the brain a bit more consistent and have less lightheadedness although maybe not optimal for the renals ?
Dr__Gornik: It is possible particularly if your carotid FMD is more than mild, that you feel better with a slightly higher BP that maximizes perfusion to your brain. It sounds as though you are getting very thorough care, and I would recommend that your carotid disease be re-evaluated regularly.
Creston: I have FMD in my Coronary arteries, the LAD presented with a spontaneous dissection, and two months post stent placement, they discovered my right coronary artery was 80% blocked. I have a total of 5 stents in my heart. During the angioplasty they also discovered I have FMD bi-laterally in both femoral arteries, and later suspected FMD in the lilacs. How common is this? My symptoms have disappeared and I am feeling very well. How long do the medicated coronary stents typically last?
Dr__Gornik: Dear Creston. I am sorry to hear that you have had such difficulties with your health. I must say that coronary FMD, though it has been reported in the literature, is quite rare. In my relatively large practice of FMD patients, I may have just 1 or 2 patients with coronary involvement, so my answer to your question is that your situation is unusual. If you were to be evaluated in our FMD clinic, we’d likely evaluate you for other causes of arterial dissection, including certain inherited disorders of the connective tissue to be sure that this is just FMD (or FMD alone) causing your symptoms. Drug-eluting (“medicated”) coronary stents have a much lower rate of renarrowing than bare metal stents that are not drug coated, so they can last for many, many years. It is important to continue to take your anti-platelet medications (aspirin and clopidogrel) as prescribed by your cardiologist, as these stents have a somewhat increased risk of clot formation compared to the bare metal kind, even though they have a much lower rate of renarrowing.
Greenjean: If FMD is not severely narrowed but is found in several areas, what is the pattern of time for this disease to progress or may it just remain mild?
Dr__Gornik: Dear Greenjean. Unfortunately, we don’t have definitive information for you on this important question. My sense of things is that it is unusual for beading/narrowing of FMD to progress overtime, with the exception of patients with intimal fibroplasia, the more aggressive type of FMD. I think the FMD International Patient registry will give us a lot of important data on this very question.
scottie: I live in Scotland and submitted a question relating to whether the action of remodeling on the arteries by ARBS such as candesartan is dose specific. I am presently on 2mg daily and my BP is well controlled using this and atenolol. Would a higher dose of candesartan give a greater remodeling effect?
Dr__Gornik: Scottie -- there have been 1 or 2 case reports in the medical literature showing that an angiotensin receptor blocker (ARB) may have altered the beaded appearance of the renal artery in a patient with FMD. 1 or 2 patients does not make a substantial body of data to recommend this for all FMD patients or to have any information on the specific drug or dose that might benefit. ARBs are good medications for high blood pressure, and I do prescribe them in some of my FMD patients, but I have yet to be convinced at all that this medication does anything to “reverse” the FMD itself. Stay tuned, though….
Ronni: Hi Dr. Gornik and Pam, I just got in but wanted to say thank you for everything. I will be getting a biopsy for Sjogren's on Monday and I will not have to get off the Plavix and aspirin as my ENT will do 2 small stitches. Is this okay for FMD patients? I do heal quickly
Pam_Mace: Thanks for the update Ronnie and for all of your recent efforts in raising awareness of FMD.
Dr__Gornik: Hi Ronni. Yes, in general a biopsy of the mouth/face is fine for FMD patients. In terms of stopping aspirin and Plavix/clopidogrel, the safety of this depends on why you are on the two medications in the first place. These medications should not be stopped, for example, in a patient with recent coronary stenting, particularly the drug coated stents. For all the folks on the chat or reviewing the transcript, it’s important to check with your vascular doctor or cardiologist before stopping your anti-platelet medications. Sometimes the physician or nurse who asks you to stop the medications may not be aware of the specific complexities of why you are on the medications in the first place and may not have all the information regarding the risks vs. benefits of stopping these agents.
Diagnostic Testing and Follow up
SherryS: I am a 61 yr old female. Two years ago I had one of those $99 heart scans at my local hospital. It showed 0% calcification. Is this "good news" relative in any way to my FMD diagnosis of the carotids?
Dr__Gornik: Hi Sherry. I do think it is good news in general, but not necessarily directly related to your FMD. A negative coronary CT scan can be reassuring in terms of your overall risk of a major cardiac event (such as a myocardial infarction or heart attack), but it is more a test to rule out atherosclerosis, the cause of garden variety plaque, and not a test to look for FMD, which is a non-atherosclerotic process.
Irene: First of all thank you for doing this chat. My question deals with follow up. How often should a person who has bilateral renal FMD be seen for follow up if they are stable? Also should someone with renal FMD on a routine basis have their carotids checked for FMD? Thank you.
Dr__Gornik: Hi Irene. 2 great questions. In terms of your second question for patients with renal FMD, I always evaluate the carotid arteries at least once with a carotid ultrasound exam. If there is carotid FMD, I recommend a one time brain MRA to look for brain aneurysms which can be asymptomatic.
In terms of your second question, I don't think we have a definite answer for frequency of follow up for renal FMD patients – I would see you at least 2 times a year and also check your blood pressure in between visits.
Pam_Mace: The frequency of your follow up depends a lot on how you are doing and your symptoms. I would echo what Heather says - I would always recommend getting your carotids checked if you have FMD in any other artery, as we are seeing much more carotid disease than previously reported.
ErinM: After left vertebral artery dissection, I was diagnosed with fmd following angiogram. My right carotid artery is affected. My question is What is the best method to follow my condition? MRA, ultrasound, angiogram?
Dr__Gornik: This is a very important question. Unfortunately there is no standard answer - the best imaging modality to follow your disease depends on the expertise at your institution. At Cleveland Clinic for example, we follow most patients with carotid FMD with ultrasound, but that is because we have a very experienced vascular lab in terms of recognizing and following FMD. In other institutions, MRA or CTA may be used. I will add one thing. Ultrasound, in general, is not adequate to follow vertebral disease, but does a good job to follow the carotid arteries. For vertebral arteries, we would use MRA or CTA. And in some cases, we would not need to re-image at all if you are asymptomatic. Many of these imaging studies are not only costly but carry with them some risk such as radiation or dye exposure, so more is not always better in terms of testing.
Pam_Mace: I agree with Heather's comment about radiation; depending on a patient's symptoms, appropriate testing is warranted.
Mimi: I have two sons age 25 and 27. Both seem to be healthy. I occasionally take their blood pressure to monitor Blood pressure. As they do not show signs of hypertension, is this enough monitoring? Or would there be any other monitoring they should have based upon their family history of FMD? Thank you
Dr__Gornik: Hello there. FMD can run in families, but in most cases, it does not. For healthy sons of a patient with renal FMD, I would recommend exactly what you are doing to screen for FMD – monitoring blood pressure. I would not generally recommend any additional testing unless hypertension is diagnosed at a young age. If one of your sons develops hypertension, I would recommend a screening study for renal FMD, such as an ultrasound examination.
llfoster: If C-Reactive Protein is normal for an FMD patient, how often should this test be ordered?
Dr__Gornik: I’m afraid there are not guidelines here for all patients at low or intermediate risk of vascular disease… and certainly absolutely none for FMD patients. I generally check us-CRP at least once when I meet a new patient, and I may consider checking it again if I might use the information to recommend a statin drug for a patient.
Mimi: Is there a correlation between high CRP (C-Reactive Protein) and FMD ?
Dr__Gornik: Great question. As FMD is a “non inflammatory” disorder, if a patient had very high levels of CRP and vascular beading c/w FMD, I would be very worried about another diagnosis, such as vasculitis. However, some patients can have slightly high levels of C-reactive protein that can only be detected on what is called an “ultrasensitive” CRP test. Elevated ultra sensitive CRP may be associated with risk of atherosclerosis and can be found in patients who are overweight, diabetic, or who have atherosclerotic vascular disease. So, FMD is not necessarily associated with elevated CRP, per se, but there may be some patients with FMD who have elevations of ultra sensitive CRP.
Greenjean: Can a high RFH blood test possibly be related to FMD by causing vascular inflammation?
Dr__Gornik: I am not sure what you mean by RFH blood test. I think you may be referring to rheumatoid factor blood best. FMD is a non-inflammatory condition, so a high rheumatoid factor is not directly related. However, patients with FMD can also have other conditions, such as rheumatoid arthritis (where rheumatoid factor may be elevated); this is especially likely in middle aged women in whom both conditions are diagnosed.
Greenjean: Do you suggest a neurology or vascular doctor is most appropriate overall for FMD for follow-up care?
Pam_Mace: I think it depends on which arteries are affected by FMD and the type of facility where you are being seen as well as the experience of your doctor in treating FMD. When patients with carotid FMD contact me, I always suggest both a neurologist and vascular doctor. If you have renal involvement, I suggest also seeing a nephrologist.
Zimbabe: Is it preferable to see a Vascular doctor or a Cardiologist for FMD care?
Pam_Mace: Again, it depends on which arteries are affected and the experience of the doctor. Some doctors are certified in more than one area. I suggest you look up the physician’s credentials.
Greenjean: Would you suggest a CTA be done for my daughter age 23 with brain aneurysm found? She has high BP controlled by medications and has a history of migraines.
Dr__Gornik: Dear Greenjean. High blood pressure in such a young person is abnormal, and your daughter should be evaluated for secondary causes, which would include FMD.
Medications, Supplements, Vitamins
llfoster: Do you recommend FMD patients take Flax Seed Oil, Co-Q10 and Fish Oil? If yes, what doses?
Dr__Gornik: Hi LL. we have no specific data on nutritional supplements in FMD patients. However, I know flax seed in particular can be helpful for overall cardiovascular health. Fish oils may also be helpful, but over the counter supplements aren't always well regulated in terms of their content. For overall cardiovascular health, I recommend eating fatty fish a couple times a week, although there are no specific recommendations for FMD patients.
Young_A: I live in Scotland and was diagnosed with FMD of carotids, vertebrals and renals in Dec 09. I also have 2 aneurysms on the cervical vessels. My condition is worse on the left side and non-operable due to location and severity. I have 2 questions- 1)Is the remodeling effect of candesartan thought to be dose related or not? 2) I also have left-sided subclavian stenosis and get neck, shoulder and jaw pain. Do you have advice on management of this?
Dr__Gornik: Dear Ms. Young. Thank you for joining the chat. In terms of your first question, there have been 1 or 2 cases reports on the uses of an angiotensin receptor blocker for vascular remodeling in FMD, but this is not enough data to support its use or show any clear benefit in FMD patients. Nonetheless, if a patient with FMD has hypertension, I generally use an angiotensin converting enzyme inhibitor (ace inhibitor) or angiotensin receptor blocker (ARB) as a first line drug, so for high blood pressure, something like candesartan would be a good choice. Just don't have any data that this works in terms of any benefit on the FMD itself, but we know it's a good blood pressure agent.
In terms of your second question, you may have symptomatic sublcavian stenosis, but your symptoms are also somewhat atypical for this and could also be due to a non vascular problem. It would be important to determine how severe the narrowing in you subclavian artery may be and also whether you have low blood pressure in your left arm. If I were seeing you in the clinic, I would perform a vascular study where we would measure blood pressure in your left arm and then see if this blood pressure dropped to low levels while you are exerting yourself, and causing pain. If this were the case, one might think about an angioplasty procedure, but it is also important to be sure that there are not other diagnoses at work, such as a nerve problem, spine problem, or muscle problem.
llfoster: Do you typically recommend a Statin if LDL is normal? I have heard this is standard of care in Europe.
Dr__Gornik: This is a good question, and we don’t have rigorous clinical data to support our practice. For my FMD patients with LDL cholesterol > 100 mg/dL, with any atherosclerotic plaque, or with a prior ischemic stroke, I generally do recommend a statin agent, or at least I discuss risks vs. benefits of statins with the patient.
sunshine1: In your experience working with FMD patients, is aspirin therapy enough to help lessen some of the symptoms of vessels with stenosis due to FMD?
Dr__Gornik: Good question. Yes, most of my patients with carotid FMD are maintained on aspirin therapy alone, and I have seen very few “aspirin” failures in my practice. I have a few carotid FMD patients, particularly those who have suffered a carotid dissection, for whom I recommend clopidogrel (another antiplatelet medication that works by a different mechanism) or the blood thinner warfarin.
BoDLN: Dr Gornik, I am taking 1200 mg of red Yeast Rice and 500 mg of Milk Thistle for my liver. Will they have an adverse effect on my Lotrel?
Dr__Gornik: I am afraid I am not very familiar with the potential for drug interaction or toxicity of the red rice yeast, mild thistle, and your Lotrel. I know there has been some concern recently that not all red rice yeast preparations are the same and some may contain additional chemicals or have more or less potency of the element that lowers cholesterol. The National Institutes of Health has a Center for Alternative Medicine and you might try their website: nccam.nih.gov. Also, consider talking to your pharmacist.
Greenjean: Is Plavix routinely used as treatment to prevent blood clotting for FMD patients? Are there alternative drugs?
Dr__Gornik: Hello Greenjean. See answer to sunshine1, above. In most cases, aspirin is adequate, but for a small percentage of patients, clopidogrel may be prescribed.
Harperandwesley: thank you for doing web chat and many thanks to organizers and participants at recent FMDSA annual meeting. I really recommend for all potential or actual patients. Just a quick question. I was having escalating frequency of cerebral artery dissections several years ago. I was started on doxycycline intermittent therapy and this seems to have stabilized vessels. I can't find any current research about this and wanted to know what you thought about this association. thank you
Pam_Mace: That’s interesting, I have never heard of any research on this, but another patient had asked about this over a year ago.
Dr__Gornik: I am also not familiar with this treatment. I know that antibiotics such as doxycycline have been studied for treatment of aortic aneurysms, but they have not been found to be very successful.
Symptoms and Symptom Relief
AliceA: Hello... I was diagnosed in December of 2004 with FMD along with having an aneurysm and stroke. Lately I hear a thumping sound(my heartbeat) not a swoosh in my ears. It was just one ear at first but as of late last year. It affects both. I take only medications basically to maintain a normal blood pressure ( 2 types), a statin, Synthroid and an osteoporosis supplement. The thing is I have never been on anything to thin my blood (as I had a subarachnoid bleed). I would really love to have an evaluation to tell how the disease is or is not progressing. The depressing fact is.. no one in this area seems to know what I am talking about!! I would truly love some type of help or knowledge, as my daughter has started having symptoms as well.
Dr__Gornik: Hello Alice. I would definitely recommend following up with the neurologist or neurosurgeon who helped care for you during your brain aneurysm and stroke. I generally obtain annual imaging studies for my patients with FMD, such as a carotid duplex ultrasound. Ask your neurologist/neurosurgeon regarding aspirin. For many patients who have had an aneurysm treated, this is fine, but this needs to be decided on a case by case basis. The thumping sound in your ear is common among FMD patients… some patients report a "ringing" others a "swooshing" and others a "thumping." As for your daughter, have her discuss her symptoms with her doctor, along as the fact that you have fibromuscular dysplasia and a history of brain aneurysm. In most cases, FMD does NOT run in families, but in some it can.
sunshine1: I currently have FMD in my left renal artery and my left internal carotid artery. The degree of stenosis in my carotid artery is 40-60%. I feel as though I have symptoms most days (pressure in the left side of my head, intermittent blurry vision in my left eye, head aches and my left eye looks to be not as healthy as the right eye) I have also had a lot of trouble keeping my attention focused. Are these "symptoms" that would warrant consideration of treatment of such a stenosis? Also, is it possible to have a vasospasm is such a vessel to make symptoms worse on certain days? Treatment for this? Thank you for all of your time and dedication to helping patients with FMD!
Dr__Gornik: Good questions. Many patients with carotid FMD report symptoms that you described that do not correlate to severe stenosis, such as headaches, swooshing sound in ears, tinnitus, tightening in the head sensation, neck pain. In these cases, there is no clear evidence that angioplasty would be at all beneficial and also note that angioplasty carries some risk. We do sometimes consider carotid artery angioplasty for intractable headaches or for patients who have severe symptoms who had a carotid artery dissection. It would be warranted to have an evaluation with an experienced specialist in FMD.
Pam_Mace: I would add that I am not sure what type of doctor is following you or when your last testing was done, but I would recommend following up if your symptoms seem to be worse and you have not recently had testing.
Dr__Gornik: I would also recommend that you would see a neuro-ophthalmologist for your eye symptoms and a good vascular doctor, experienced with FMD. I think your question about spasm is a good one. Spasm of blood vessels can lead to migraine headaches, and I have clinically seen patients with FMD who may also have spasm of blood vessels in other areas leading to worsening symptoms.
Greenjean: Not sure you got my questions 1-5 or 6 plus the question about the annoying swish and unable to sleep?
Pam_Mace: We did not receive your prior questions – sorry. However, I have been living with the annoying swishing for years. Sometimes just repositioning my head helps.
Janet: My daughter was recently diagnosed with FMD, are behavioral changes to be expected?
Pam_Mace: From my personal experience and experience dealing with patients, depending on vessels affected and severity, patients go through lots of emotions including anxiety, fear, and depression and in cases, loss of normal activities and life changes due to having the disease.
Pam_Mace: In many cases, this can take several years to work through.
Dr__Gornik: There may also be physical reasons for behavior changes such as blood pressure shifts and central nervous effects of medications she may be taking. I also agree there is stress in having a new diagnosis of a disease, particularly if you are a young person. We have a psychologist and psychiatrist who work with us in the FMD clinic. I would recommend you discuss referral to a mental health professional with her physician.
VANurse_2: I am a 63 yr old female who has been in very good health. WT, exercise level, cholesterol levels normal, b/p 95/60. Experienced dizziness and angina like pain upon exercise in afternoon.(But not in AM) Was placed on Amlodipine 2.5mg. Had negative treadmill. Had carotid duplex with findings of 60-79% stenosis Distal ICA from FMD. Vascular doc said take a wait and see approach with repeat ultrasound in 6 months and to take 81mg ASA QD. Father had 2 strokes and abdominal aneurysm. Is this a treatment plan you would support?
Dr__Gornik: dear VANurse – I would not be doing your case justice if I made treatment recommendations without talking to you, examining you and reviewing your imaging studies. Some of your symptoms could be FMD related but I would be concerned about other problems as well.
Ajones: I have had hypertension for 14 years and recently was diagnosed with FMD, severe narrowing of the right renal arteries and angioplasty was performed three weeks ago. During the 14 year period, I have experienced panic/anxiety and I am wondering could this be associated with FMD or the hormone angiotension II.
Ajones: This isn’t a question but I just wanted to thank you all for providing live online health chats, I am from Australia and it has been difficult to gain information and advice about FMD. I am so grateful for your time and advice. Thank you so much.
Pam_Mace: Dear A Jones, thank you for your nice note and I also am very grateful to the Cleveland Clinic for the web chats. It is such a great resource for patients all over the world.
Dr__Gornik: Again, thank you for your comments. I have cared for some patients with renal FMD for whom their episodes of very high blood pressure manifested as feelings of doom or anxiety. I wonder what your blood pressure was during these times. I also wonder if the angioplasty has not only helped your blood pressure, but your anxiety too.
MaureenW: Pulsatile Tinnitus about drove me crazy a few years ago. I used a machine by neuromonics.com that was programmed to my hearing test and used music therapy with white noise impregnated in the music. Unfortunately, the machine wasn't coverage by insurance but I slept with it on my ears for two years and it did help me retrain my head to not focus on the swooshing. I imagine you hear this complaint from us with the swooshing. Pulsatile tinnitus can be very debilitating in the beginning. Does Cleveland use white noise machines or any other therapy?
Dr__Gornik: Dear Maureen. Thanks for your question. We have started to explore some auditory therapy options for pulsatile tinnitus here at Cleveland Clinic, but are just in the earliest phases of looking into this. I know that “swoosh” is a major, major problem for our carotid FMD patients. Stay tuned!
Mossy: Has the ear "ring" ever been described as a high pitch "sing" -- much like the sound of electrical wires?
Pam_Mace: Hi mossy, patients contact me with all different types of descriptions of the noise in their ear, the most common being the swooshing noise. In some cases it turns out that some of the different types of noise are related to other things and not FMD. Have you seen an ENT doctor?
Dr__Gornik: Hi Mossy. Yes, I agree with Pam. Your “sing” is different from our typical FMD “swoosh” due to turbulent blood flow in the carotid artery of the neck. I agree an evaluation by an ENT specialist may be very helpful.
FMD in Children
hkp: We live in Iceland and our 7 year old daughter has been diagnosed with FMD in her renal arteries. As far as we know she is the only child that has been diagnosed with this condition in Iceland. Her carotid arteries have been checked with ultrasound. Should her carotid arteries and brain be checked with more accurate techniques? What imaging technique would you then recommend? Can MRI give false positive or negative results?
Pam_Mace: Hi hkp. Your daughter's symptoms and the severity of symptoms would drive the type of testing. Specific questions - I can reach out to Dr. Kevin Myers, who is our pediatric nephrologist on the FMD advisory board, who would be happy to respond. Email me your specific questions.
Dr__Gornik: Dear hkp - I suspect there are other children with FMD in Iceland, although this is an uncommon problem. I may recommend your daughter be evaluated by a nephrologist at a major university/medical school if she has not been already. At the FMDSA meeting, we did have a discussion regarding the fact that FMD in children seems to be a slightly different disorder than the FMD that presents in young and middle-aged women — there seems to be more aggressive narrowings, and the intimal disease seems to be more common.
My sense of things is that carotid disease tends to be less common in the pediatric type of FMD, but this needs to be substantiated with research. I think a carotid ultrasound or MRA in an experienced center should be adequate to screen for FMD. The FMDSA may be a fantastic resource for you to connect with specialists in pediatric FMD as well as families that have the same experience. I encourage you to contact Pam.
Hkp: Our daughter has FMD and we have lost a son to brain cancer (sPNET). Is there any known link between FMD and cancer?
Pam_Mace: I am so sorry for the loss of your son. I am not aware of any link between FMD and cancer nor have I ever been contacted by another family with a similar history.
Hkp: What kind of regular check ups/follow ups would you recommend for her?
Dr__Gornik: I, too, am so sorry to hear of your son's loss. In terms of what type of follow-up is recommended for your daughter, it’s difficult to say without knowing her history and examining her. For children with FMD, renal FMD seems to be more common, and frequent follow-up for blood pressure monitoring is often needed until blood pressure can be well controlled.
Hkp: Is it ok for her to participate in sports (gymnastics and dancing) given that her BP is under control? What if her carotid arteries or arteries in the brain are affected?
Dr__Gornik: Please see some of the answers under the exercise section. Your daughter’s exercise regimen does need to be tailored to her own case, including her blood pressure control and whether there is FMD in the carotid arteries. Usually patients with FMD are able to do most of the activities they have enjoyed (with a few exceptions like contact sports, scuba diving, ski diving), but the intensity of the activity may need to be modified. This is a very important issue to bring up with your daughter’s FMD specialist.
Hkp: How common is FMD in children? How is FMD likely to progress in a child as it grows up?
Dr__Gornik: These are great questions. FMD in children sometimes has a different presentation than FMD that presents in young and middle-aged adults. FMD in children may present with renal artery disease but also narrowing of the aorta or the arteries to the intestines. FMD in children is more commonly the intimal type, which presents with smooth, tubular narrowings rather than the classic “string of beads.” The FMDSA-sponsored International Patient Registry will hopefully give us some very important insights on the difference between “pediatric” and “adult” FMD.
FMD and Women
tracyvdb: What % of your female patients also have pre-mature menopause and/or ovarian failure. I am interested in whether there is a link between this and FMD.
Dr__Gornik: Hi Tracy – great question. I do not have data for you now, but I will tell you that Age at Menopause is one of the data fields we are collecting in the international FMD patient registry sponsored by FMDSA.
Pam_Mace: With my experience in talking with patients, this is not a question that I hear a lot about from patients.
Tracyvdb: Is it always recommended to stop estrogen replacement (including birth control pills) for patients with FMD? If so, what is the best method for preventing osteoporosis in young (30s) patients with FMD and pre-mature menopause? I currently take 500 mg of calcium with D 3/day. Is there anything else I should be doing from a prevention perspective?
Dr__Gornik: Dear Tracy. This is an outstanding question, and unfortunately one we just don’t have an answer to. Because FMD is so much more common in women than in men, it has been proposed that one of the factors that leads to this is estrogen. When studies have been done looking at birth control pills and development of FMD, however there has been no consistent link. Hormone replacement therapy with systemic estrogen may be associated with increased risk of ischemic stroke based on large studies of patients, but there is no specific data in the FMD population. I generally do not recommend starting hormone replacement therapy for women with carotid FMD, and we consider other options for symptoms such as topical (i.e., vaginal) estrogen preparations or even some complementary and alternative therapies for hot flashes, etc. A discussion of use of oral contraceptives and/or hormone replacement therapy is an important part of the clinic visit in our FMD program, and every patients’ risks vs. benefits is different. In terms of preventing osteoporosis, calcium and vitamin D is great. Aerobic and some light weight bearing exercise is also potentially beneficial long term.
VA Nurse2: What part does age at menopause play in FMD?
Dr__Gornik: Another great question. See above. We don’t yet know whether age at menopause is associated with FMD, but we are collecting data on age at menopause as part of the FMD International Patient Registry.
Risk Factors and FMD
mimi: Has there been any connection between high levels of homocysteine and FMD?
Dr__Gornik: Hi Mimi - no literature yet to my knowledge, but as you may know, we are collecting blood samples from FMD patients here at Cleveland Clinic as a part of a research study and I do think homocysteine levels among FMD patients may be one of the things we will look at along with levels of inflammation such as cRP, lipids and other factors.
Beady: Can obstructive sleep apnea cause carotid FMD?
Dr__Gornik: To my knowledge, no, and I don't suspect they are related, aside from the fact that obstructive sleep apnea is a common disorder in the U.S. I always emphasize to my FMD patients that they can have other health problems too and not to let FMD become the scapegoat for everything wrong with their health, although that is what commonly happens when a patient has an uncommon disease.
MaureenW: Okay, Taboo subject. Have you seen any difficulty with people with FMD and immunizations. I am an advocate for immunizations and have had my share while in the Navy and working in the medical field. My concern is that I don't react well to immunizations, I get severe joint pain after receiving them and I am a nonconverter with smallpox and hep B. Also Rheumatoid Factor went up to 40 after Hep B series. (I do not have RA, they tested because of joint pain). Just wonder if our immune system is a wee bit sensitive. I can't bring myself to get the flu shot because I know I will ache terribly if I do.
Dr__Gornik: It is important to know that FMD is a noninflammatory disorder and I know of no data and have no clinical experience that makes me think of a link between immunizations and FMD. I don't think the immune system is a key player in terms of the pathogenesis of FMD, but we obviously need more research in this area.
kperlini: Getting the right balance for exercising when you have FMD is challenging . What about water aerobics with water weights to increase resistances. Thank you
Pam_Mace: Many patients have asked questions about weightlifting and exercise. Exercise is important. Your specific exercise regimen should be based on the severity of your disease, arteries affected and should be something you and your doctor agree on. There is a great article in Fitness magazine that came out this past February. Information is on the FMDSA website.
llfoster: What is the upper heart rate in exercise acceptable for a patient with carotid FMD only, otherwise healthy? Also, how long is it okay to sustain the upper rate? Do you feel it is okay for patients with carotid FMD to play tennis?
Pam_Mace: As each patient and their medical history is different, this is a conversation I feel you should have with your personal physician who is familiar with your medical history and what your normal heart rate is; he or she can then better guide you in where your heart rate should be with exercise and how long you should sustain it.
Dr__Gornik: I agree with Pam. Each patient’s circumstances are different, and factors that influence a patient’s personal exercise prescription include whether or not there is a history of prior dissection and how well blood pressure is controlled, so I agree there is no “one fits all” solution here, Different types of exercise are associated with different degrees and types of physiological stress. For example, there is a difference between singles and doubles tennis and how competitive the game will be. Factors such as maximal heart rate and maximal blood pressure need to be considered, along with whether exercise is sustained at a moderate pace or is more of a sprint type of exertion.
llfoster: What is the maximum weight an FMD patient should lift?
Pam_Mace: I think your doctor would have to answer this question as he/she is familiar with your case. Personally, I have carotid and vertebral involvement and I only use light 5 pound weights- its not worth the risk for me.
Dr__Gornik: I agree with Pam that we generally do apply a weight restriction to our FMD patients – heavy weight lifting is associated with Valsalva maneuver which puts a large strain on the blood vessels. I generally tell my FMD patients or carotid dissection patients to avoid lifting more than 25 pounds.
lizaugusta: I have bilateral renal stenosis (successfully treated with angioplastly for uncontrollable hypertension) and stenosis in the external carotids that is not symptomatic. I am 37 years old and would like to know (as I am sure all of us do) if I need to worry about the disease progressing, coming back in the renal arteries, going to other arteries, etc. Is it common for the disease to remain 'dormant' once there is symptomatic resolution? Also, any recommendations for physicians in California?
Dr__Gornik: Dear Liz, as to your prognosis, which I think is at the heart of your question, this is precisely why we are conducting the FMD patient registry. I will say, in my own clinical experience, there are many patients who have had stable disease over many years. That being said, if you look at the literature probably about 25 to 30% of patients will need another renal angioplasty procedure within 5 to 10 years. The registry will give us more information about this too. I think it is important to see a vascular specialist experienced in the care of FMD periodically to see how you are doing and evaluate the stability of your disease — hopefully you will have good news at your visits.
Pam_Mace: In California, Dr. John Cooke at Stanford and Dr. John Laird at UC Davis are two physicians that see FMD patients.
MaureenW: So thankful for all your help with FMD. After a busy year seeing so many FMD people, is there anything that has surprised you about FMD or the people you have met that have traveled so far for help.
Pam_Mace: I am sure this question is meant for Dr. Gornik, but I have to say it is still surprising to me how many people are getting diagnosed and contacting FMDSA. This is a very educated group of people and I am told on a regular basis “I want to be seen by the best doctors for this disease.”
Dr__Gornik: Neat question Maureen. I have been constantly surprised and motivated by the drive of the FMD patients and their families to learn more about their disorder and to go back to their communities and educate family, friends, and even their doctors about their problem. I’ve really come to respect the “swoosh” in the ear – it really is common. Also, my sense of things is that FMD is a chronic vascular condition that can lead to a lot of health problems, but can also be managed and overcome, so I am pleased that I have not seen a lot of critical illness due to this disease. I have also learned that while there are a lot of commonalities among FMD patients, each patient really is different and needs are careful “going through” of their history, physical exam, and imaging to come up with the best treatment plan.
Peaches2: it seems as though most patients seem to already know their condition and how severely they are affected.
Pam_Mace: Hi peaches, some of the people asking questions have had the disease for years and they have great doctors who sit with them and discuss their disease and plan of care. I would suggest getting a copy of all of your medical records and putting them into a binder and update it every time you go to the doctor or have a test done.
Peaches2: I would like to know how does one go about setting these diagnoses since there are no doctors in my area I am familiar with. And my daughter seems to exhibit the same symptoms I have and I had a dissection five years ago. Lately my symptoms are getting worse.
Pam_Mace: I am not sure where you live but you can contact me and I can try to help you find a doctor in your area. firstname.lastname@example.org
Lizaugusta: Are you finding any relation to other connective tissue disorders? My father has Ehlers Danlos, and I wonder if this might be related.
Pam_Mace: hi lizaugusta, I am only aware of two patients that have fmd and ehlers danlos. There is information about an NIH research study and an abstract on the FMDSA web site www.fmdsa.org.*
Dr__Gornik: I will disagree a bit with Pam and say that we do see an overlap of FMD with other connective tissue problems, and we have a genetics counselor in our clinic who helps us evaluate other blood vessel wall disorders when appropriate. We have seen some patients in the clinic who have been told they have FMD, but in reality they have another blood vessel wall/connective tissue problem. In your specific case, the history of Ehlers-Danlos in your dad is certainly concerning, and I would recommend that you undergo evaluation for this disorder.
Greenjean: What % of patients has a genetic history of FMD? How is this tested or researched?
Dr__Gornik: My sense of things is that the majority of patients with FMD do not have a family member with this problem, although there are reports of familial FMD in the literature. The International FMD Patient Registry, sponsored by FMDSA, will collect data on family history.
Greenjean: Pam - thank you for organizing this and Dr. Gornik thank you for helping us patients to better understand what is going on. I will like to find out if there is any way people out of state (Central New York) can be seen at your clinic and still have some kind of health benefits coverage.
Cleveland_Clinic_Host: Cleveland Clinic participates with most major medical insurance programs. See my.clevelandclinic.org/patients-visitors/billing-insurance/accepted-insurance.aspx for information on insurance plans accepted by Cleveland Clinic. Coverage limitations are dependent on individual group contracts. Therefore, you should contact your insurance provider directly to learn the specifics of your coverage at Cleveland Clinic. Your insurance representative is the best person to inform you of the level of coverage you will have as a patient here. Please contact our Financial Counselor - Cardiovascular Medicine: 216.444.9434 (long distance, call 800.223.2273, ext 49434) if you need further financial information.
raccoongirl04: I was diagnosed w/ fmd of right renal artery & both leg arteries. Had angioplasty 2 months ago to open 90% blocked renal artery and left leg. Afterwards the angio-seal let loose a bit and I had a large hematoma. I'm actually still sore 2 months later. My concern is that the right leg will eventually need to be done. How often does a hematoma complication occur? It was quite painful and I 'm concerned about having further angioplasties because of it. Also, how often should I get imaging studies done? I can't have mri's due to my pacemaker. Thank you.
Dr__Gornik: In terms of the hematoma that developed after your procedure, unfortunately that is a recognized complication of all catheter-based procedures, and patients without FMD can have this happen too. Your experience is a valuable lesson to the group that all invasive procedures carry with it some risk including the risk of bleeding. That being said I am very sorry this happened, and hopefully your symptoms will improve soon. If you are still having pain in your leg this far out, please let your doctor know and you should be re-evaluated.
Pam_Mace: As a cath lab nurse, hematomas are seen in all patients, not just FMD patients. That is why it is important to follow discharge instructions. As Dr. Gornik instructed, I would contact your physician, and even contact the cath lab and ask to talk to a nurse familiar with your procedure and they may be able to help answer your questions.
Dr__Gornik: As to your frequency and type of imaging studies, that is determined on a case by case basis. In many cases, especially when MRI cannot be performed, ultrasound can be used to follow FMD.
FMD Conference, Registry and Research
csterritt: I have a known 4 yr history of FMD found innocently as a carotid bruit. I have no side effects except HTN. My mother and her identical twin have suffered from HTN their whole lives. My younger sister also has high blood pressure, but is not treated. Would we be candidates for the FMD registry? What is involved in an evaluation? Does insurance cover the stay and workup?
Dr__Gornik: Thanks for your question regarding the FMD registry. It sounds as if you have carotid and perhaps also renal FMD. FMD can run in families, but in many cases it does not. You would definitely be eligible for the international FMD patient registry. As the registry is currently organized, you would need to be cared for at one of the registry sites. We are fortunate to be a registry site, along with Mt. Sinai in New York (where the registry lead investigator Dr. Olin is located), University of Michigan (which is also coordinating the study), and other sites, including Mayo Clinic, Oshner Clinic (New Orleans), Institute of Vascular Health (South Carolina), North Central Heart Institute (Sioux Fall, South Dakota). I understand that more sites may be added soon.
mimi: I was not able to attend the conference in May. Was there any new information about FMD given ?
Pam_Mace: The meeting was very exciting and all the feedback was very positive. This year our focus was on more research, which is very exciting. By next year's meeting we will have data from the patient registry to share at the meeting. It is also very exciting that new FMD clinics will be opening. I would really like to thank Mass General and UC Davis for being sponsors as well as Cleveland Clinic, and both will be opening FMD clinics/clinic days. Follow the FMDSA website for more information when it can be announced.
Dr__Gornik: For me, the most exciting aspects of the meeting were the beginnings of a formal research effort in FMD, which has never been undertaken previously. The registry will provide vital data in terms of the epidemiology of this disease, natural history and prognosis. We have started a biorepository of blood samples to study genetic factors and biologic markers in FMD patients. Unfortunately all research requires 3 things: 1. motivated patients and researchers; 2. research funding; and 3. a little bit of time. I will just say we have 1 covered but we need to work on # 2 and #3 together.
Pam_Mace: FMDSA is currently funding one research project in Belgium and the patient registry. Both require continued funding; all research proposals are reviewed by our board of directors and approved by the executive committee. After this year, we will only be able to fund the patient registry due to our limited funding.
llfoster: What is the total number of patients enrolled in the FMD registry worldwide?
Pam_Mace: Our last update as of May was 175.
llfoster: Thank you for volunteering your personal time to speak at the recent FMD conference. Would you be able to post your lecture notes on the Clinic web page or FMDSA web?
Dr__Gornik: Dear llfoster, I really enjoyed this year’s FMDSA conference and came back from the meeting refreshed and inspired for my clinical activities and research here at Cleveland Clinic. Your suggestion to post the lecture notes is a great one, and I will forward these along to FMDSA.
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Heather Gornik and Pamela Mace is now over. Thanks again Dr. Gornik and Pam for joining us.
Dr__Gornik: Goodbye everyone, and thank you for participating. The enthusiasm of the FMD patients continues to be a great personal and professional motivator for me. You guys keep me on my toes!
Pam_Mace: Thank you everyone for participating - great questions. Together, we are learning.
caitlynn: Thank you Dr. Gornik and Pam for all you're doing to help patients with FMD!
Zimbabe: Thank you Pam and Dr. Gornik for this time it is very valuable and deeply appreciated :)
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