Thursday, December 7, 2017 - Noon
Fibromuscular dysplasia (FMD) is an uncommon disorder often found in women between ages 30 and 50, but may also occur in children and the elderly. It can be difficult to diagnose, but while there is no cure, it can be treated effectively. SCAD (spontaneous coronary artery dissection) is a rare condition that occurs when a tear forms in one or more blood vessels, which can slow or block blood flow to the heart and cause a heart attack. It is mostly found in women between the ages of 30 and 50 and is associated with FMD. Vascular experts Heather Gornik, MD, Natalia Fendrikova Mahlay, MD and Pamela Mace, RN, President of the Fibromuscular Dysplasia Society of America (FMDSA) answer your questions.
- View more information about FMD.
- FMD and SCAD Clinic at Cleveland Clinic
- If you need more information, contact us or call the Miller Family Heart & Vascular Institute Resource & Information Nurse at 216.445.9288 or toll-free at 866.289.6911. We would be happy to help you.
- View previous chat transcripts.
- Fibromuscular Dysplasia Society of America - FMDSA
bones: How does FMD affect the GI tract? What are symptoms, indications that FMD is affecting brain arteries?
Natalia Fendrikova Mahlay, MD: When FMD affects the GI arteries, it may cause abdominal pain, especially after eating. Mesenteric (GI artery) FMD may cause an artery dissection or aneurysm, which can be associated with pain or bleeding. In terms of brain artery FMD, this can also cause dissections and aneurysms and can present with symptoms of headache, swooshing in the ears, and more rarely stroke or bleeding.
Heather Gornik, MD: I'll also mention that in many cases brain (cerebrovascular) FMD can be asymptomatic.
DBTC: I was diagnosed with "mild" FMD involving four arteries following a first SCAD event in May 2017. The SCAD was not in any of the four areas and did not result in a stent or any heart damage. Are there any measures I can take to slow or stop any progression of the FMD?
Heather Gornik, MD: Fortunately, FMD does not seem to be a quickly progressive process... but good to do all that one can for general vascular health.
Natalia Fendrikova Mahlay, MD: We always want to make sure that blood pressure is well controlled, cholesterol and blood sugar remain normal, and you are on the appropriate medications for heart and vascular risk factors.
Pam Mace RN: This was a hot topic "does FMD progress" at our meeting last year... from my experience in working with patients for over a decade, FMD does not appear to be a progressive disease. After diagnosis, patients who receive proper care for their FMD go on to live full lives...and we hear from them (in terms of concerns) less and less.
Pdm64: I was diagnosed by cerebral angiogram in 2016, with bilateral carotid FMD. I was referred because my GP heard bilateral bruits on both carotids during a routine exam. I have mild headaches and have had some dizziness in the past, but no other serious symptoms so far. My blood pressure is normal. No aneurysms and no dissections. I have had three carotid ultrasounds since, and each one has shown an increased velocity. The last one had increased velocity from 170 to 234 on the right side with similar findings on the left side. Does this indicate that my FMD is progressing? Can progression be detected by ultrasound? I am being seen by an interventional radiologist who is excellent and very knowledgeable about FMD. I was 64 years old at diagnosis. I currently take one full aspirin daily. Thank you for taking my question.
Heather Gornik, MD: Usually when velocities change on ultrasound, it's not because the FMD had progressed, but because a different tech/lab did the scan. Those changes are pretty modest. FMD rarely progresses, but talk to your doc.
Kahlan453: I have been diagnosed with FMD and have an appointment with Dr. Gornik in March. What are the symptoms of SCAD? Are there ways to see if past dissection has happened?.....If repeat angioplasty is needed let's say in three months, could that just mean the prior angioplasty wasn't successful or could the FMD be that progressive that fast? I really have a ton of questions but most can wait till March. I would like to give a thank you real quick to you, your team and Pam Mace for putting information and awareness out there.
Heather Gornik, MD: I look forward to meeting you. During your visits in our clinic, we spend a lot of time reviewing your history, exam, data, and making a plan and answering questions. As for SCAD, that is spontaneous coronary artery dissection -- fortunately, if you have not had this happen to you it is very unlikely to develop.
SupportFMDsa: Thank you Dr. Gornik, FMDSA and Pam Mace for all your years of dedication to finding out more about FMD. Since you two have so much experience and knowledge of FMD, I am wondering what do you think is the most significant finding you have learned of in the last ten years? Thank you!
Pam Mace RN: Thanks! I am absolutely amazed at the number of people being diagnosed with FMD....this is nothing that we ever expected in 2003 when FMDSA was incorporated. The fact that the disease was considered primarily a renal disease, and now we know that is not true, I think will help prevent many newly dx patients from suffering consequences they would have without that information.
Heather Gornik, MD: I agree with that, and would add: Link between FMD and aneurysms and dissections-- Up to 40% of patients with FMD have had one of these...this was a novel finding from the US Registry. I am very proud to have worked with our Registry on that.
MIAngel59: I am newly diagnosed with FMD in both carotid arteries and have an ultrasound scheduled for my renal arteries. I am 58 years old. Does this affect my lifestyle, i.e., running, strength training, and yoga? Is there any information regarding life span with this disease? Second, two weeks prior to the cardiac event that lead to my diagnosis, I had a hemorrhage in my left eye where it was discovered that I have a blocked artery and a blocked vein. I had a hypercoagulable workup done that was negative. Could FMD be related to what is going on in my eye?
Natalia Fendrikova Mahlay, MD: I am sorry about your health problems! This seems to be complicated...we would really need to see you in the clinic and review all our records and scans to answer these questions/concerns.
FMD and Dissection
andyj: I have FMD in multiple arteries my last dissection was in April 2017, I had severe bruising and pain in both arms prior to this, no one knows why. I read Dr. Rooke say his mentor, an interventional radiologist, use to tell him you can easily tell a difference between FMD and segmental arterial mediolysis because FMD never dissects and SAM does. If it dissected, then by definition it's SAM. Can you comment on this?
Heather Gornik, MD: There has been a lot of new knowledge about FMD since 2012, and we have learned that FMD does indeed cause dissection. In fact, up to 20% of patients in the US FMD Registry have had a dissection, so that adage is no longer true. SAM is another topic --- it presents with many vessels dissecting at the same time in the absence of beads.
desertdune: I'm confused. In one answer I read that FMD causes dissection. In another the answer is that FMD is not progressive. Does that mean it does not need to be monitored and occurs with or without dissection at dx?
Heather Gornik, MD: Good question. Progression means beads get worse without a dissection. This is uncommon. Dissection is a sudden tear in an artery that can lead to a blockage quickly. They are different.
Robin Berlin: Hi Dr. Gornik! I need a new screen name as I am a post soccer mom too :) Having said that and a mom of two girls in college and new evidence re: genetics and hormones? It was exactly three years ago this week I had bilateral carotid artery dissections. I have FMD. I still experience pain in the left carotid area (neck, cheek, eye occipital) about twice a week on average. I know it is not common to be experiencing pain at the level I still do, but want to check in if you are hearing of other patients experiencing pain where the dissection was before stent. We know stent is good. Any info on this with you and the FMD team.
Heather Gornik, MD: It's a small subset of patients who have dissection related pain so far out... I am really sorry this is still ongoing.
Sun-chaser: Does FMD come with you at birth, or can it develop at any point? Is the genetic component string enough that my kids (young adults) should be scanned? I was adopted, so health history is scant at best.
Heather Gornik, MD: I would say stay tuned...there are many groups currently studying genetics of FMD, but there is no genetic testing now. We recommend checking family members only if they have symptoms of FMD (high blood pressure at a young age, swooshing in ears, etc.). Again, we hope there are advances here and more to tell you in the years to come.
Paco3: Hello. I'm 52 with FMD in vertebral, carotid and iliac beds and a SCAD in Jan 2013. I was wondering if any research has been done on causes of FMD, specifically in utero.
Heather Gornik, MD: Thanks for this question. Multiple research efforts are ongoing to understand FMD. There is likely a combination of genetic, hormonal, and possibly mechanical factors that cause FMD. Stay tuned for more information in the years to come. I am excited by the number of new investigators who are becoming interested in researching FMD, and the FMD Registry continues to generate new information. Unfortunately, these things take time… but I am hopeful that in the near future we will understand more about what causes FMD.
Diagnosis of FMD and Diagnostic Testing
Jill Nikole: To properly diagnose FMD, should a carotid artery scan be completed as well as a renal scan? Or would a normal renal scan be enough to rule out FMD?
Heather Gornik, MD: Great question…I’m glad you asked it. In order to rule out FMD, I think assessing the carotid PLUS renal arteries is a good place to start, but depending on symptoms, other areas may need to be imaged as well. For patients found to have FMD in one area, we now recommend imaging all of the arteries from “brain to pelvis” to check for FMD, but more importantly for aneurysms or dissections (tears) in arteries.
SoccerMama: Just diagnosed with FMD in both carotid arteries with aneurysm on one side. Diagnosis came after ED dismissed CT findings (after sudden, severe migraine). Like many with this diagnosis, I had never heard of this disease and am feeling very overwhelmed and anxious, as well as confused (something I never experienced in my 21 years of military service). As I am struggling with how to address this disease, its ramifications and impacts on the rest of my body, I am uncertain on where to start this journey. I understand Dr. Gornik and Cleveland Clinic are the leaders in this area, and I'd be interested in any advice in light of limited information, exacerbated by the number of medical professionals who are unfamiliar with this disease. To make matters worse, many people key on the fibromuscular term and assume a muscular condition. Therefore: 1) What would be your best advice for someone in my situation? 2) How do I start this journey/process? Thanks for the help!
Heather Gornik, MD: Your screen name makes me smile… I am a “SoccerMama” too! First of all, I think it is important to be seen by someone who is experienced in the care of patients with FMD... ideally at one of the US Registry centers which have the most experience, but if not, perhaps by a vascular medicine or vascular surgical specialist who has cared for these patients. I would also emphasize three key things as you start your journey: 1) It is important to be sure the diagnosis is correct. Not every patient labeled as having FMD ends up truly having this disease, as there are other conditions that can “mimic”/overlap with FMD. 2) Every patient with FMD is different – the location of the beads/narrowings and severity can manifest differently in every patient and every patient needs an individualized care plan. 3) Not all symptoms a patient may have are due to the patient’s underlying FMD – important to see an experienced clinician who can really correlate symptoms to vascular findings. Good luck to you, and we would of course be happy to see you here.
FMDk: Is it dangerous for a patient with mild FMD in iliac, renal and carotid arteries to have a heart cath?
Natalia Fendrikova Mahlay, MD: Your cardiologist needs to be aware of your diagnosis before planning the procedure. However, please know many patients with FMD undergo heart and other catheterization safely.
quirky: I am an asymptomatic 60-year-old female with incidental discovery of "mild beading" in both ICA via CT head angiogram. No stenosis, no aneurisms in head, vertebrals ok. My new primary doc saw this incidental note at bottom of report. Sent me to vascular doc who ordered U/S studies of carotids, iliac, aorta, and renal arteries. Found elevated flow velocities in right renal. Concede flow velocities not validated for FMD. Right ICA also had elevated velocity but no stenosis seen on 2D image and no spectral doppler turbulence. BP is running 115/72 and have no other symptoms--fairly healthy, no meds. Chol less than ideal but ratios are good for that and triglycerides. Vascular doc says follow up with U/S six months - one year. But also said could consider CTa or MRa. Still called incidental finding. Is my prognosis OK? Will it continue to be dormant? Have been taking one - two fish oil per day/years. They did not mention baby aspirin. Do I really need to get further study with CTa or MRa? I am reluctant.
Natalia Fendrikova Mahlay, MD: It would be best for you to be seen in our FMD program or another center experienced with FMD patients to get all of our specific questions answered. As for type of testing that needs to be done, it all depends on which vessels are involved and the specifics of your case.
Ishajune21: Greetings from Canada. SCAD/MI medically treated 2014. Renal ultrasound shows artery demonstrates an increase in wall thickness with some irregularity. CT shows iliac arteries mildly tortuous with no significant stenosis. Is FMD diagnosed by a specialist in FMD or by general radiologists?
Pam Mace RN: FMD is diagnosed many times incidentally through imaging that was done for another reason. Depending on the patients' symptoms, they may present to a PCP, neurologist, or nephrologist. I highly suggest patients, once diagnosed with FMD, f/u at one of the US Registry centers with someone experienced in the dx and treatment of FMD. For international patients, we do have a patient representative for different countries (Canada, others) listed on our website (www.FMDsa.org) that can help you identify a physician in your country.
Symptoms of FMD
bones: Is increased anxiety a symptom of FMD?
Pam Mace RN: Anxiety is not a symptom of FMD, although once patients are diagnosed and told they have a rare disease (with no cure), it tends to increase anxiety --- at least initially. I find that the more that patients educate themselves and are evaluated at a center that understands FMD, it makes a huge difference. FMDSA hosts an annual meeting and it gives patients the opportunity to meet others with the disease and learn the latest data on FMD.
SDsummer: Every once in a while I will have a sharp pain in a finger or toe and then a minute or so later, a large bruise will appear. I assume that a blood vessel has burst, causing the pain and subsequent bruise. Is this related to the FMD and SCAD?
Heather Gornik, MD: This sounds like something called a spontaneous venous hemorrhage, which is generally benign. It is NOT directly related to FMD or SCAD, but could be related to being on anti-platelet or blood thinning medications.
FMD Monitoring and Follow up
SupportFMDsa: You mentioned having imaging from brain to pelvis to check for FMD and or aneurysms and dissections. How often should this be done?
Natalia Fendrikova Mahlay, MD: At least once to determine which vessels are involved with FMD -- additional scans will depend on the specifics of your disease.
Heather Gornik, MD: It's starting to come up that patients with FMD in one area had that brain to pelvis imaging five years ago that didn't find aneurysms/dissection/disease, should they get another scan every X years. I'll be honest, we don't have a definite answer to that and it is individualized.
Ladiedoc: How often should FMD be checked for after an initial CTA was negative for FMD?
Heather Gornik, MD: We don’t have guidelines on this, and it’s a case by case basis. If someone was “screened” for FMD and has no evidence of FMD anywhere on scans, I may not ever check again. If a patient has known FMD, let’s say in the renal arteries only, but has no FMD in any other areas on the ‘brain to pelvis’ imaging, we don’t have guidance on whether to check again… in my practice, I sometimes might check the other areas 5-10 years later, but again, we don’t have good data to support when to do this so it’s customized to the individual patient and their history and pattern of disease.
mdv: Since FMD is not progressive, at what frequency (if any) do you generally recommend rechecking?
Natalia Fendrikova Mahlay, MD: It's a good and common question! Frequency of testing will depend on the specifics of your case (such as symptoms, vascular complications like aneurysm/dissection, severity of disease, etc.). At minimum, we repeat imaging every one - two years, but again it varies by patient.
tingle bells: Female, late 40s, with sudden onset pulsatile tinnitus two years ago. It lasted six months, resolved for a bit, then returned. Both times the onset was after a hard run (is exertion a factor?). I also have numbness/tingling episodes in my riight hand, which seem to be progressing. Attacks last 20-30 seconds, and they used to come on a few time a day--they felt like my hand/arm was filling with air and buzzing. Now they happen dozens of times per day (98 times the day I tracked it), and the "attacks" feel a little different--more uncomfortable, with a squeezing sensation in hand (and sometimes also upper arm). It feels like I'm not getting blood, feels heavy/clumsy...then it passes. Docs ruled out carpal tunnel and thoracic outlet syndrome, which they initially suspected since arm movement brings on attacks. A recent carotid ultrasound found tortuosity, but my doc says it's "not FMD." With PT and tortuosity, though, are more scans in order? Are these hand/arm episodes consistent with FMD? If so, I'll travel!
Natalia Fendrikova Mahlay, MD: It would be difficult to say for sure if your symptoms are related to FMD without seeing you and looking at your scans...we know that up to 30% of patients with extreme carotid tortuosity may have FMD, but FMD in the arm arteries is fairly rare.
Sun-chaser: Is a vascular specialist best suited to follow FMD? I initially consulted with neurosurgeons after a spontaneous carotid dissection, but they didn’t identify FMD. The vascular surgeon did.
Pam Mace RN: I think you should not focus on the specific medical specialty...it's the experience of the person treating your disease (FMD). I can't stress this enough.
FMD and other Medical Conditions
Pdm64: Has any correlation been discovered between FMD and arthritis? I was diagnosed with bilateral carotid FMD at the age of 63. Is it likely I have had this all my life and it has only now been discovered? Does stress cause or exacerbate FMD?
Natalia Fendrikova Mahlay, MD: There is no known association between FMD and arthritis. Our average age of FMD diagnosis is mid 50's and many patients present after incidental findings without any symptoms. We do not have data on FMD and stress.
2011FMD: I was recently diagnosed with pulmonary hypertension. My cardiologist inferred that he views my multifocal FMD, ASO and PAH as indications of some large, possibly interconnected, vascular problem. Has research or the data base shown any correlation? I am 70, female, never smoked, maintain a healthy weight and active lifestyle. My concern is on yet another disease (rare, afflicting mainly females) that puts me at greater risk for stroke. Thank you for your great work dealing with FMD.
Heather Gornik, MD: FMD is not known to cause pulmonary artery HTN. See my prior comment that “not all symptoms a patient may have is due to FMD.” I would be sure other causes of pulmonary HTN are assessed, including silent prior blood clots.
Wendyll: Good Morning. Is there or could there be a relationship between FMD and Prinzmetal’s Angina, even if it’s a case of mild FMD? Also, is it a good idea to be taking Statins?
Heather Gornik, MD: I don't think of FMD as causing vasospastic angina, but it can cause coronary dissection/SCAD. FMD does not seem to cause chronic chest pain syndromes. In terms of statins, this is a non atherosclerotic/plaque disease --- whether you need statins or not depends on your cholesterol and other risk factors.
bones: I was diagnosed at age 66 with FMD at UVM Burlington. In the past two years have lost 20 lbs. Is this normal for FMD?
Natalia Fendrikova Mahlay, MD: I don't think this is typical for FMD to cause weight loss...please follow up with your local physicians to check for other causes of your weight loss.
bones: Have had stent placed in the SMA and now there is scar tissue around the stent. FMD was diagnosed about 18 years ago. Any comments or suggestions?
Natalia Fendrikova Mahlay, MD: Without any additional information it would be difficult to say if your SMA stent placement was related to FMD. It would be difficult to offer any opinion without knowing specific information.
Treatments - FMD
Julie Kasper: What about cryotherapy, is it safe to use this kind of therapy with FMD?
Heather Gornik, MD: There is no role for cryotherapy in the management of patients with FMD.
Bunky: I have been diagnosed for 10 years now and I have found that the need for angioplasty’s have increased. My main area of FMD is renal. Is there a time when a stent is used and if so does it help or is the chances close to same of repeat?
Pam Mace RN: I am not sure why you are needing angioplasties routinely... this is unusual...unless you are very symptomatic. If you are not being seen at one of the Registry centers, I would recommend you do so at least once. Is your BP out of control? Why do you need continued angioplasties? Are you having renarrowing? Feel free to reach out to me offline at FMDSA (216.834.2410). If you are not already on our Inspire support group page, that may be helpful as there are over 2,000 patients on there who may be a good resource for you. Link below.
mpgillette: I had a SCAD in September 2017, do you consult with SCAD patients? I have not been able to find a cardiologist in the Toledo, OH area who has treated a SCAD patient. I am seeing a cardiologist but I am his first SCAD and I sense that he really isn't sure what to do with me. Do you recommend I be tested for FMD? If so, what are the risks with the diagnostic test used?
Heather Gornik, MD: Yes, we absolutely see patients with SCAD in our FMD/SCAD program. We have multiple providers who have experience evaluating patients who have suffered a SCAD event. We generally check patients who have had SCAD for FMD – this is accomplished with CTA or MRA in post cases and includes imaging of the arteries from the brain into the neck and in the chest, abdomen, and pelvis (aorta and branches). We are looking for FMD, but also other vascular abnormalities like aneurysms or other dissections.
mekanik: I am 60 years old and have had a SCAD in 2003 and got CABG. Got MI in 2008, but did not find anything on CAG except that the graft was closed and there was nothing to see at the place for the old dissection. There was no symptoms until 2013, after which I have an unstable angina pectoris with a few weeks to months apart. There have been no troponisms the times I have been hospitalized. Over the past six months, I have got extrasystoles several times a day. They come about on every third beat and lasts for a few minutes up to an whole hour and they come especially when I do something where the pulse rises. Is it common for you to see angina pectoris more frequently after so many years without symptoms? Is it common to get more extrasystoles when you have had SCAD? Do you think that it may be due to my older age and I should leave it as long as I'm not getting sick or fainting? I have normal heart function with just a mild to moderate aortic insufficiency.
Natalia Fendrikova Mahlay, MD: I am so sorry for your symptoms. It seems that you really need to be evaluated by a cardiologist familiar with SCAD who can review your specifics.
Heather Gornik, MD: Agreed... and of course we'd be happy to see you here with our team, but we really need to review specifics of your case.
Jillnikole: Cold season is coming and I'm a new SCAD patient....what otc cold medicines are safe to take?
Natalia Fendrikova Mahlay, MD: Avoid the medications containing decongestants which may raise your blood pressure.
HllSCAD2016: The mayo clinic recently came out with an article about SCAD survivors who have chest pains in conjunction with their menstrual cycles. Are you seeing this in patients you see at Cleveland Clinic? What causes these brief pains? What, if any, treatment is recommended for these? Are these pains that we feel causing any damage?
Heather Gornik, MD: Hi there. I've seen this data and think it's interesting...clearly there is a lot to learn about post SCAD chest pain syndromes...it's not the usual mechanisms of chest pain.
Treatments – SCAD
Sherid: Hi - I have seen a study that recommends beta blockers to prevent SCAD recurrence. I understand everybody is different but is there a recommended dosage for Metoprolol Tartrate? If not, what is the most prescribed dosage you've seen for SCAD and FMD? I'm 5'9" and 140 pounds and taking 12.5 mg twice a day but that's a small dose and I want to make sure I'm getting a protective effect. Thank you!
Heather Gornik, MD: This comes from a cohort study out of Vancouver and is Dr. Saw's work.... they did not look at specific doses nor was this a randomized controlled trial. Nonetheless, I think it is interesting data...stay tuned.
Ladiedoc: Have you ever treated SCAD patients with EECP?
Heather Gornik, MD: I have not used EECP (which uses leg compression cuffs to improve endothelial function) to treat SCAD. For most patients with SCAD, the arteries heal within a few months of the initial event, so there is not a need to treat long term blockages. Some patients with SCAD do have a chronic chest pain syndrome, the cause of which is likely different than that of typical angina, heart blockages, but we have not used EECP for this here at Cleveland Clinic.
Catwoman: I had a spontaneous carotid dissection two years ago. FMD was missed by neurosurgeons on scans until a month ago, when a vascular surgeon at MD Anderson in Houston identified it on the carotid. He tells me it could have been present at birth. Will it grow in size along the artery or remain as is? I will have a battery of other scans in February to look for FMD in other spots in my body. I have a small pseudoaneurysm and another occipital aneurysm that is 8mm that we are watching. Having had a granular cell cancer diagnosis (behind ear) and proton radiation this summer, I’m hoping that FMD will be something I can live with. Your thoughts?
Heather Gornik, MD: Dear Catwoman: I am sorry for all of your issues. Unfortunately, in order to weigh in on specifics of your case, we would need to review your scans and see you in the office. In general, it seems that the ‘beads’ of FMD do not rapidly progress. Sometimes pseudoaneurysm from prior dissections can grow, but this is unusual in my experience. I don’t think the cancer behind the ear is related to FMD, and FMD shouldn’t interfere with treatment plans, but again, it is hard to give you specific advice without fully evaluating your case.
Sherid: Good afternoon. I had a SCAD STEMI in 2015. Afterwards, in 2016, I had a CT with contrast at Cleveland Clinic and a Pseudoaneurysm formation of the left V1 segment of my Vertebral Artery was discovered. I'm currently on a beta blocker and baby aspirin. What is the typical treatment for a Pseudoaneurysm? Does it only require monitoring? If so, how often? Is there a way to monitor it without another CT with contrast? If it's a certain size, does it require surgery? Are there any risks with it (for example, could any part of it break off and cause a blockage)? Thanks so much.
Natalia Fendrikova Mahlay, MD: Most of the carotid/vertebral pseudoaneurysms are followed with serial imaging as long as they do not cause major symptoms. For most of these pseudoaneurysms, no intervention is needed as long as they remain stable in size and symptoms are controlled. We recommend making sure your blood pressure is well controlled and continuing your blood thinning medications (such as your aspirin).
Heather Gornik, MD: ..and to f/u frequency of monitoring is really determined on a case by case basis... most often patients are able to get down to yearly scans, but more frequent initially.
Caring: What level of blood pressure is meant by "well controlled"? I had a SCAD and have FMD in my coronary, vertebral and right renal arteries. My blood pressure is consistently very low 90s/50s. I am taking metoprolol, valsartan and for blood thinning, 81mg aspirin.
Heather Gornik, MD: That blood pressure is terrific as long as you feel OK! New definition of hypertension recently released....goal < 130/80 at all times...ideally lower for patients with prior dissection.
Activity and FMD and SCAD
NCSCAD: I have recently suffered a SCAD and was subsequently diagnosed with FMD in my carotid and vertebral arteries. Should I be concerned about having my neck extended to have my hair washed in the basin at the beauty salon? Any other activities to avoid? Thank you!
Pam Mace RN: Activities to avoid would be things such as: roller coasters, sky diving, scuba diving, and contact sports. I have seen things related to "beauty parlor stroke" caused from neck extension...but this seems rare and the patients didn't necessarily have FMD. That said, if you have cerebrovascular FMD, I would be cautious with anything that causes your neck to be extended for a period of time -- especially if this causes symptoms (dizziness, headache)
Ladiedoc: I had SCAD 8.1.17. I didn't have access to cardiac rehab but exercised six days a week before my SCAD. It was located in my right coronary artery no stents. I was told by my cardiologist I could do push-ups, planks, sit-ups. On Facebook groups many people say no. Can you give me a better idea as to what can and cannot be done?
Heather Gornik, MD: We generally recommend against isometric exercises such as chin ups, full push-ups for patients who have had SCAD, along with heavy weight lifting. That being said, there are currently no formal guidelines on this. I know the American Heart Association plans to publish a Scientific Statement on SCAD in 2018 stay tuned, perhaps there will be more information there.
FMD and SCAD Clinic at Cleveland Clinic
SoccerMama: Due to the expertise and "popularity" of the FMD Clinic, it is becoming very challenging for new patients to get appointments any earlier than June 2018! For someone newly diagnosed with FMD, this feels like an eternity--is there any thought or potential for expanding FMD clinic days/times to allow patients more flexibility in scheduling appointments?
Heather Gornik, MD: I am sorry for your troubles...we have expanded our team of experts to include others, including Dr. Fendrikova-Mahlay. All of these docs were personally selected and trained by me to work in our FMD program. WE have a meeting a few times a month where we discuss cases and make sure we have a consistent approach. My colleagues may have more access than me... make sure you are asking for first available doc in the FMD program. Again, I think they are all great.
Moderator: Thank you to everyone for joining us this afternoon. Unfortunately we cannot complete all questions, but many of those not answered were addressed in previous questions.
Pam Mace RN: I would like to thank everyone for the great questions. I wish you all Happy Holidays. Please don't hesitate to contact FMDSA... I see that many people on the chat are from all over the US and other countries and are looking for care. We do offer resources and have patient volunteers in other countries that can be a resource for you.
Natalia Fendrikova Mahlay, MD: I am grateful for the invitation to participate in this web chat! You have asked great questions...wishing everyone Happy Holidays.
Heather Gornik, MD: I guess that's a wrap! It's been great to hear your questions..some simple, some more complex. I'm sorry we didn't' get to them all. I would like to thank Pam Mace for being here today and all she has done for FMD and as a partner in our research, clinical, and advocacy efforts. Pam, you are an inspiration to me always! I'd also like to thank my partner Dr. Fendrikova Mahlay for coming for her first chat. She's been a terrific partner in our FMD clinic, and I know she will be getting more and more involved in FMD in the years to come.
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