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Fibromuscular Dysplasia (FMD) (Dr. Gornik and Pam Mace RN - FMDSA - 4/18/12)

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

Wednesday, April 18, 2012 - Noon

Description

Fibromuscular dysplasia (FMD) is an uncommon disorder characterized by abnormal cellular growth in the walls of medium and large arteries. FMD is often found in women between ages 30 and 50, but may also occur in children and the elderly in some cases. Often the disease is hard to diagnose since many FMD patients do not exhibit any symptoms or findings on a physical examination. Treatment for FMD varies and can be tailored to treat different severities and while there isn't a cure, it can be treated effectively. Dr. Gornik, a vascular medicine specialist and leader of The Fibromuscular Dysplasia Clinic at Cleveland Clinic and Pamela Mace, RN, President of FMDSA and an FMD patient answer your questions.

More Information


Diagnosis of FMD: Symptoms and Diagnostic Testing

kathleen: In the meeting in January where the registry results were reported, Dr. Lookstein said,” Assessing a patient's renal artery before and during treatment using IVUS and a pressure wire provides the key to successful resolution of hypertension by renal-artery angioplasty in FMD patients." I have FMD in my renal and carotid arteries. I had one angioplasty 4 years ago which helped with my malignant hypertension. But I am on 5 blood pressure pills. I have been thinking of going to one of the FMD clinics and am wondering if they all use the IVUS and pressure wire procedures that Dr. Lookstein recommended. If not, which clinics do use them?

Dr__Gornik: Kathleen, for the group I think you are mentioning the ISET meeting which had a few sessions on FMD. It is an important interventional radiology meeting held each year in Miami, Florida. Most of our FMD interventional team members do use IVUS and/or pressure gradient assessment for FMD here at Cleveland Clinic, though there are some cases where this may not be done. Unfortunately, we don't yet have hard evidence that these things help with successful procedures in our renal FMD patients, but yes, I agree (as a non interventional person) that IVUS and pressure gradient measurement are very helpful.

Pam_Mace_RN: I am aware that a lot of facilities do not use IVUS. I would check with the facility you are being evaluated at if you are being considered for a procedure if it is important to you.

Dr__Gornik: I really second that. As a patient, I think it is reasonable to discuss things you have read about regarding procedures with the doctor who is going to be doing the procedure.

Yram22: My daughter, who is 21 years old, has had ongoing face pain and pressure, dry eyes, and left sided paresthesias/sensations down her left arm, side, and leg for over a year now after feeling a sudden 'pinch' in her left side of her neck. The doctors did a CT scan and MRI of her head and neck and only found an ethmoid cyst. She recently had an episode where she had something like shortness of breath. Her left ear is now feeling hollow and dry with pain, like in her sinuses. Could this be FMD? If so, what type of doctor should she see and what type of tests should be ordered? Thank you for your time.

Dr__Gornik: Dear Yra22. While this could possibly be FMD, the symptoms do not sound typical for this, and there are many other potential causes. FMD can cause some neurological symptoms and headaches and a ringing or swooshing sound in the ear, but not dry eyes or hollow ear feeling or usually shortness of breath. I would start with a good general medicine or family medicine doctor to evaluate your daughter's symptoms.

kathleen: Does the whooshing in the ears mean that the FMD is getting worse? Some days mine is worse than other days.

Dr__Gornik: Good question. I don't think the whooshing sound means that FMD is getting worse in most cases. There are factors like blood pressure and also "ambient nose" that can alter how loud the "whooshing" is perceived. As you know, and sounds like live with daily, Whooshing is very common among FMD patients.

Living_grateful: 1. When I was first diagnosed with FMD, I was told my pain was not caused by the FMD. I have heard that there are now recognized pain issues with FMD, is this true? 2. In regards to the spiking blood pressure, is there still testing or research being done as to what is actually triggering the spikes, i.e. the artery stenosis vs. an endocrine/adrenal trigger? Thank you!

Dr__Gornik: I do not think of FMD as being a disorder that causes chronic pain in MOST patients. However, some patients who have dissections have had chronic severe headaches and neck pains (carotid dissection) or abdominal pain (renal dissection). Some FMD patients do have pain --- I always as a doctor want to look for NON FMD causes of the pain, as again, just the artery lesion of FMD alone do not generally cause pain.

ssvilar: What are some of the symptoms of mesenteric FMD?

Dr__Gornik: Hi Ssvilar! Mesenteric FMD can present with abdominal pain after eating and weight loss. It can present with a dissection of an intestinal artery. In some patients it is entirely asymptomatic though it can cause a bruit a doctor hears over the abdomen or is found on an imaging study done to look at other arteries (such as a CT or MR of the renals).


Renal Artery FMD

FMDSHANE: Dr.Gornick, I have FMD of both renal arteries and have already had four renal angioplasties and a renal stent placed. I was diagnosed at the age of 66 years old and have had FMD (severe) since 2005. Currently I take Lisinopril, Toprol XL, Norvasc, Tekturna, Medicardis, Hydralazine, Clonodine patches, Clonodine 0.2 Mgm prn and still have blood pressure surges over 200 systolic. I applied for the trials for renal denervation but was turned down at three separate centers for three reasons; one because I have FMD; one because I have a stent and one because I have had angioplasties. Do you think that once the trials are over that patients like me will be considered for the procedure? I am not eligible for a renal autotransplant, renal bypass or nephrectomy as my left kidney does not have enough function for the right one to be removed. Does any medication control the surges? Thank you so much for dedicating yourself to FMD patients as you give us hope.

Dr__Gornik: Dear FMD SHANE. You have been through a lot, but I also really appreciate your question and your educating others about renal FMD. You raise a few important points. Unfortunately, for some patients with very severe disease, angioplasty may not cure or even control HTN. For some patients, surgery is considered. It sounds like you have had opinions from very experienced centers, but if not, you should pursue this.

With regard to renal denervation. This is a very "hot topic" in the cardiovascular world right now. It is an experimental therapy, not available in regular clinical practice to treat high blood pressure. As you correctly point out, to my knowledge, patients with renal artery disease, including FMD and atherosclerosis, are excluded from studies of this. I do not know at this time if this will be a treatment for HTN in renal FMD patients, but I await data first to see if it helps folks without FMD. Thanks again for the questions.

scottie: Thank you for this opportunity. This question relates to renal FMD. What are the indications for surgical intervention? My present understanding is that if creatinine and albumin/creatinine ratio are normal and also BP is under control with meds then renal artery stenosis does not need surgical intervention. Is this correct?

Dr__Gornik: Important question Scottie. For renal FMD, the indication for intervention (which is usually in 2012 an angioplasty rather than surgery) would include uncontrolled blood pressure or new onset high blood pressure in a young patient or high blood pressure on many medications with difficulty tolerating the medications. For asymptomatic patients without high blood pressure, we would not intervene on FMD unless there was a problem with renal function or if there were a renal aneurysm. Again, I will emphasize that fortunately, most renal treatment is done with minimally invasive procedures, likely angioplasty, though surgery was done in the past.

Kimm: Hi Dr. Gornik. I was diagnosed with FMD in August 2011. Both renal arteries are about 70% blocked. I have had angioplasty on the right renal, which was not successful. A MAG 3 test showed that I have 100% kidney function. The vascular surgeon says I'm too high risk for any further procedures. Carotids were scanned and are ok. My BP readings are still slightly high, but being treated with Norvasc 5mg and Toprol ER 37.5. I'm wondering if there is any further testing that I should have done. Also, If my renals are both significantly blocked, how can I have 100% kidney function? Also, can this condition affect the eye? I also have a narrowing of a vessel over my optic nerve head. What would be the symptoms if the arteries in my legs were to become blocked? Should I be on plavix? I am on baby aspirin right now. Thanks so much for taking the time to have this chat and also taking time to answer my question.

Pam_Mace_RN: Hi Kimm, I would suggest that you get a second opinion. If you are able to travel I would recommend being seen at one of the registry centers or FMD programs/clinics as they see more FMD patients than the average doctor. You didn't state where you live so feel free to contact the office and we can help you find a doctor close to you pam.mace@FMDsa.org

Dr__Gornik: I would second that Pam. Kimm, we'd of course be delighted to see you here in Cleveland. As for your question regarding leg symptoms and FMD, in many cases there are no symptoms at all, but a doctor may hear a noise called a bruit over the arteries in the legs, especially the groin area. Some patients with FMD in the leg arteries (actually the arteries in the pelvis that supply the legs, or iliac arteries) can have claudication, a symptom of pain in the legs with walking that goes away within a few minutes of rest. Good luck to you

Kimm: I have already been to Mayo clinic in Jacksonville and now see Dr.'s at Emory in Atlanta. I live in North GA. Thanks for taking the time to answer my questions.

Pam_Mace_RN: Thanks for joining the chat

Kimm: With both renal arteries affected with FMD, is there a need for regular Renal Scans?

Dr__Gornik: We generally do recommend surveillance studies for our FMD patients. In my practice, we usually do an ultrasound every 6-12 months. At other centers, something like MRA may be done.


Carotid Artery FMD

KateC: In 2002 at the age of 32, I was diagnosed with an occluded right internal carotid artery - likely due to dissection. The physician notes indicated beading in the left internal carotid artery with potential FMD. There was very little information on the web at that time. After several repeat Angios, the occlusion cleared due to Coumadin treatment. Since it cleared, I have not seen the doctor. The question I have is with beading and a dissection, can FMD be definitively diagnosed. I live in Atlanta, Georgia and I am not aware of an FMD specialist here. Should I have any ongoing tests? I have also had kidney stones and feel a significant amount of abdominal pain from time to time. Could there be a relationship?

Pam_Mace_RN: Hi Kate, since you were diagnosed in 2002 and the physician also noted a question of FMD in the left carotid artery I would suggest that you are seen for a follow up. Most of the patients I speak with are evaluated at least once a year and more frequently if they are symptomatic.
Dr Rishi Gupta is at Emory in Atlanta he is the Associate Professor of Neurology and he is familiar with FMD. 
Good luck!

LP2330: I had a carotid dissection in 2008 with no confirmed reason for dissection. Was treated for 1 year with Coumadin and after MRA was cleared that dissection had healed. In 2011 I lost vision in eye(s) which returned within about 20 minutes and was admitted to the hospital. Diagnosed with TIA and confirmed FMD with CTA of head and review of MRA from 2008. Since then have been taking Plavix daily. I have a question regarding "beauty parlor stroke syndrome". Since neck manipulation is to be avoided with FMD, do you feel there is any issue/risk with your head going back into a shampoo bowel? Since the TIA when going to the salon I have been having my hair washed forward into the bowel. Is this a safe alternative or is there really no concern here? Thank you.

Dr__Gornik: Dear LP2330, I am familiar with the concept of "beauty parlor stroke" or cervical dissection occurring after salon treatment... but I really think this is very, very rare and have not personally yet seen a patient with salon-related dissection.

Pam_Mace_RN: I am aware of an article on "beauty parlor stroke" where FMD is mention. That said, I am not aware of anyone who has had a stroke or dissection after being at the salon (... at least not until they got the bill!). I would mention to your stylist and shampooer your medical history. For me, I do this and they are very fast and gentle in the shampooing process.

LP2330: Would you feel safe to say that it is okay to lean the head back into the bowel then?

Dr__Gornik: .. back on the "beauty parlor stroke" topic all. I think OK, just tell shampooer be gentle and not prolonged. But of course, also discuss with your own doctor.

Heidi50: An ultrasound of my carotids showed >70% stenosis, but the follow-up angiogram showed good flow. is it common for the ultrasound to overstate the problem and if so, why am I going back for another ultrasound 6 months later? Same issue with the renal ultrasound vs. angiogram. Thanks!

Dr__Gornik: This is a really important point. Yes, for FMD ultrasound does not do a great job telling us how severe a blockage is. Those stenosis categories on an ultrasound report (e.g., >70%), are really designed for atherosclerosis/plaque blockages and not FMD.

aimee: I have been diagnosed with FMD of the right carotid artery. I have headaches that worsen asa result of increased vasovagal pressure (sneezing, lifting heavy objects etc) Is this an associated symptom? If so what are the treatment options?

Dr__Gornik: Aimee, headaches with Valsalva are a bit unusual for just FMD. I would be sure you are checked for an intracranial process or elevated pressures in the brain. I would suggest you see a neurologist to discuss these symptoms.


Coronary FMD

Heidi50: I had an angiogram that showed carotid, vertebral, renal and iliac FMD. I don't think my coronary arteries were not looked at. Should they be?

Dr__Gornik: We do not routinely screen coronary arteries of our FMD patients, unless the patient is having angina/chest pain or other symptoms that are worrisome. Coronary FMD usually presents as dissections/tears of arteries and not stable symptoms. I learned a lot about coronary FMD at last year's FMDSA meeting from Dr. Chris Buller.

Pam_Mace_RN: There is research being done as Dr. Gornik mentioned by Dr. Buller and Dr. Saw in Canada. We are learning more about coronary FMD. Dr. Buller will be updating us next month at the FMDSA meeting. We look forward to his update and findings.


Multi-vessel FMD

Abbiel: 1. I have moderate FMD in bilateral carotid arteries in the cervical, petrous, cavernous and supraclinoid segments and bilateral vertebral FMD in the cervical segment. I have not been able to find any information about FMD in the carotid arteries in areas other than the cervical segment. Last years angiogram showed only the cervical segments . This year’s follow up shows it in these other areas. 1. Can FMD progress this quickly? 2. What can you tell me about FMD in these other segments of the ICA's?

Dr__Gornik: Dear Abbiel. It sounds like you have multi-vessel carotid and vertebral artery FMD with some intracranial involvement. Rather than assuming FMD has "progressed" in one area over a short period of time, I would query your doctors if that area was fully imaged on the prior scans. In my experience, FMD does not tend to rapidly progress and very rapid changes are usually due to something else, like a dissection/tear in an artery. I anticipate there will be some information coming out of the US FMD patient registry regarding cerebrovascular FMD including intracranial disease.


FMD and Dissection

beachgirl1: Hi

Pam_Mace_RN: Hi beachgirl... hope you are somewhere warm :)

beachgirl1: I was diagnosed with FMD after a left vertebral artery dissection in May 2009. In October 2011 I suffered a celiac artery dissection. With the first dissection I was sent home from the ED with a "migraine." The last dissection I was told I must have a pulled muscle causing my back pain. With this dissection I never experienced abdominal pain, I thought it was a renal dissection. I was insistent on further testing, and the dissection was found. I just want to stress the importance of education and knowing your own body. My question is, as I have found very little information on celiac artery dissection and FMD - are there other unusual dissections I should be concerned about? I currently take plavix and toprol, should I consider taking any other medications? Or special scans? thank you

Dr__Gornik: You make one really terrific and important point regarding knowing you own body and also sometimes having to speak up and educate health care providers about the symptoms of an uncommon/rare disease. I have to be honest that in many cases, FMD patients have more experience/knowledge about FMD than some health care providers. We are trying to change that... but it takes time.

As for your question re: dissections, we do sometimes see dissections in the abdominal arteries, though carotid and vertebral are most common. I am afraid I don't know enough about your case to give specific advice, but I'd want to be sure your diagnosis of FMD was accurate and that other vascular disorders associated with dissection (such as a connective tissue disorder) have been ruled out. Good luck.

Pam_Mace_RN: I am aware of only a few patients who have had multiple dissections years apart and not at the same time. Dr. Jeff Olin gave a presentation on the FMD registry data on dissection at the ACC in Chicago last month and may be discussing this at our meeting in May here in Cleveland.

LP2330: What connective tissue disorders can be associated with dissections? Can the FMD be associated with these disorders?

Pam_Mace_RN: There are several other diseases that are associated with dissections, such as: Ehlers-Danlos and Loeys-Deitz. There are abstracts on the FMDSA website (www.FMDsa.org) discussing this from Dr. Naz McDonnell. Here study at the NIH is also a connective tissue study and includes patients with dissections we are hopeful some of her findings will be release in the future.

Dr__Gornik: One of our Cleveland Clinic medical students, Stacey Polosky, had a poster at the American College of Cardiology last month with our FMD group. In our practice, we have done testing for the FMD patients with dissections for Loeys Dietz and Ehlers Danlos and have found that the yield of such testing is very low. I think we need to identify new and novel marks for FMD distinct from other connective tissue disorders... the biorepository will hopefully help with this in the future.

natali1980: Hi!! I have yet to be given a clear diagnosis on FMD. I have a follow up CT scan next week in regards to bilateral vertebral artery dissections that happened on two separate occasions and I should know more then. My left vertebral artery is totally occluded but has reconstituted blood flow above the occlusion. My neurosurgeon told me my body just found "back roads" to get blood to my brain and I was lucky in that I did not suffer a stroke from my dissections. My question is, b/c there is reconstituted blood flow above the occlusion, is this just as good as having a patent artery? Also, are there any treatments or surgical procedures to open an occlusion? Thank you.

Dr__Gornik: Dear natali1980. Good questions. We see many patients with carotid and vertebral dissections here at the Clinic, some have FMD, and some do not. In most cases, because the blood flow to the brain is provided by many arteries, dissections that totally block off one artery may not cause major impairment of blood flow to the brain. Most dissections are managed with medications (blood thinners), but in some cases, procedures to reopen the artery are done. Generally if an artery is totally blocked and a patient is not having severe symptoms, it would not be reopened.


FMD and Aneurysm

ZoeyKC: What are the statistics of FMD patients with aneurysms? I have read on one site 50 to 60%? thank you

Dr__Gornik: Good question.. There should hopefully be a manuscript published from the US FMD registry in a major medical journal later this year that will address this. From our abstracts, we see ~ 15-20% prevalence of aneurysm at any location among FMD patients, not as high as 50-60% thankfully!

Pam_Mace_RN: ... we will try to get that abstract posted on the FMDSA website soon.


Exercise, Activity and FMD

FMDAdvocate: Hi Dr Gornik, thanks for your time today. Do you recommend a 3# weight limitation for all arterial dissections?

Dr__Gornik: Dear FMDAdvocate. Weight lifting restrictions vary for each individual FMD patient, important factors including whether or not you have had a dissection, have an aneurysm, and your blood pressure control. I do recommend AGAINST significant weight training/lifting for patients with FMD with prior dissection. As for specific weight target, again needs to be customized to each individual.

bnjcook: 38 y/o M paramedic with right MCA CVA (NIH scale 9) Nov 2011 2nd to right ICAD. Initial impression was vasculitis until IR dx me with FMD post angiogram. No evidence of FMD in other arteries. Questions...(1) OTC meds to use for common cold w/ controlled HTN. Obviously no NSAIDS or pseudofed. On no restrictions so I lift and transfer patients. (2) Should I ask for restrictions (25 lbs.) post-ICAD? Avid outdoorsman (backpacking, shotgun shooting, etc) and scoutmaster. (3) Can I continue these activates? Neurology is following. (4) is it more appropriate to be followed by a Vascular Surgeon? (5) Referrals for SLC, UT area? IR suggests angioplasty. (5) Is this tx appropriate and at what stage should I be thinking of tx the FMD or do I just live with it? The only ill effects from the CVA are a little paresthesia. (6) Incidence of reoccurrence of dissection with CVA? (7) If CVA again should I get rTPA to treat (pending initial CT results, of course). THANKS!-Brian

Pam_Mace_RN: Dear BNJcook - As each patient is very different and depending on arteries affected and severity of disease, I think this is a conversation you should be having with your physician who knows your medical history. As I know, most patients with a similar history would have weight lifting restrictions, but that is something you would need to discuss with your doctor.

Dr__Gornik: I agree with that and would also strongly suggest you see experts who care for patients with dissection and FMD. Unfortunately, I have had a few FMD and dissection patients who have had to modify their professions because of issues with weight lifting or other duties.

suzla: I experienced a heart attack in 2008. Two years after I was diagnosed with FMD in carotid & renal. It was then discovered to have affected the circumflex artery around my heart. Is doing cardio workouts recommended? In addition, I have an inoperable aneurysm at base of skull. I want to exercise but not sure what is "safe". Thank you.

Dr__Gornik: Dear Suzla. Sorry about all of your health issues. I don't think it would be a good idea for me to give you recommendations about exercise without examining you and reviewing your records.. please talk to you cardiologist and neurologist. Good luck!

LP2330: Are power walking and dance classes safe activities for FMD patients?

Dr__Gornik: Walking and dance OK for most FMD patients, but if you have high blood pressure or prior dissection, would always check with your doctor first.

Kimm: Is massage therapy safe when you have FMD?

Pam_Mace_RN: It depends on which arteries are affected and the severity of your disease; this is something that you should discuss with your physician. I am an FMD patient and I do get massages occasionally, but I do tell the therapist to avoid my neck area, as I have a history of dissections.


Sudden death and FMD

MKP: On Aug 2, 2011 my healthy, active 21 yr old son passed away suddenly in his sleep. Upon receiving the autopsy report it stated he passed from Cardiac Arrest due to FMD of the SA, AV & Myocardial Arties w/ severe luminal narrowing. Not sure if the other findings pertained to FMD but they were Mild aortic atherosclerosis and hypertensive cerebrovascular disease. I had never heard of FMD until this time. I also have learned there is not a lot known about the cardiac FMD. I can’t find a lot on Cardiac FMD and want and need to know more. I understand there is research being conducted. Another reason for me writing was to bring awareness to you of another sudden death due to FMD. I’m not really sure what any of this means and of course want to know why I lost my son to this. We have had my 20 yr old daughter tested and everything looks good so far. Any information, articles, or people I can talk to would be greatly appreciated. Thank you & look forward to reading your response.

Dr__Gornik: Dear MKP. I am so sorry to hear about your loss. I am aware of some cases in the medical literature and also from medical examiners and pathologists of sudden death in young people due to FMD. I think this is a poorly understood disorder. I also think it is very, very different from the FMD patients we see in our program. In our practice of between 250-300 FMD patients I have had only a few patients with coronary artery involvement, usually having FMD in other areas, and presenting with a coronary artery dissection. Thankfully I have not had a patient in my FMD practice die from complications of FMD.


Progression of FMD?

Flames12: What can I do to prevent it from progressing or can I reverse it or stop it?

Dr__Gornik: Dear Flames12. Great questions.. but in 2012 we don't have answers and there is no medication available to stop or reverse FMD. That being said, I do not think of FMD as a rapidly progressive disease in most patients, which I think is some good news.

Pam_Mace_RN: I know of very few patients with progressive forms of FMD, and most of those have intimal disease.


FMD Centers

lrmanuel: Hi, I live in Louisiana and am trying to find a doctor that is somewhat close to where I live. I have FMD in my carotid artery.

Pam_Mace_RN: Ochsner Clinic in New Orleans, Dr. Chris White, is a participating FMD registry center.

Dr__Gornik: .. we also would be happy to see you here, as many patients come to see us from across the U.S.


Research and FMD

ZoeyKC: Hello DR. Gornik & Pam, Can you give an update on the blood drawn at the FMDSA conferences for the bio-repository? Thank you

Dr__Gornik: OF course. Let me talk about the biorepository in general. We are collecting blood samples at Cleveland Clinic from FMD patients we see here. In addition, I know the Mayo Clinic is collecting blood samples from its FMD patients who would like to participate. The blood samples collected at the 2010, 2011, and the upcoming 2012 FMDSA conference are also being stored. Our plans with this collaboration are to gather a "critical mass" of blood samples from FMD patients and family members and then plan for analysis. A "critical mass" would be on the order of 500 samples or so, and we are probably only ~ 60% there. We will be talking about biobanking at the upcoming meeting.

ZoeyKC: Hello Pam & Dr. Gornik, Besides the FMDSA registry, are you aware of any other research being done in the USA on FMD? thanks

Pam_Mace_RN: Hello Zoey. The only research I am aware of in the U.S. is listed on our web site - FMDsa.org, which is the research study at the NIH and the bio-repository blood draw.

Dr__Gornik: I know there are other medical centers doing chart review and clinical reporting type research too. Dr. Olin is active in FMD research at Mt. Sinai, we have some projects here related to FMD genetics and quality of life, and I know a few Canadian groups (Drs. Buller and Saw) are working on coronary dissection in FMD patients. There may be some other single center work going on as well.

Franbh: I am seen by Dr. Michael Clark, Vascular Surgeon, St. Joseph's Hospital, Atlanta, GA. Are there any facilities in the ATL, GA area that are on the FMD registry? Thank you.

Pam_Mace_RN: Dear Fanbh; there are no FMD Registry centers in Atlanta. That said, Dr. Rishi Gupta is a neurologist at Emory and there are other physicians in Atlanta with experience caring for FMD patients. Please visit the GROUP page of our website to contact our group leader in Atlanta who can help guide you with local physicians.

Heidi50: Dr.Peter D'Houbler, a partner of Dr. Clark at St Joseph's Atlanta sees a lot of FMD. How do they get involved with the registry?

Pam_Mace_RN: You could have the physician(s) contact me at pam.mace@FMDsa.org.


Anti-platelet Therapy and FMD

Louise52: Recently I was diagnosed with a mild stroke . I was diagnosed with FMD 2 yrs ago. Currently I take 3600mg of Fish Oil /day since the stroke since I can't take aspirin regularly. Is this a common practice, and can I stay on Fish Oil for a while?

Dr__Gornik: I'm afraid Fish oil is not considered an adequate substitute for antiplatelet therapy, though we think it's good for overall health. Talk to you doctor about alternative antiplatelet agents, some of my patients take clopidogrel if they need antiplatelet therapy but cannot take aspirin.


Associated Conditions?

ZoeyKC: What is the percentage of FMD patients also diagnosed with ehlers danlos, Marfan or any other connective tissue diseases?

Dr__Gornik: See answer to question above... this is a field in progress and active area of FMD research.

Pam_Mace_RN: In the 7 years that I have been talking with FMD patients, I am only aware of 1 patient with FMD and Ehlers-Danlos.

Nature: Can FMD cause osteoporosis?

Dr__Gornik: FMD is not known to involve the bones, so I would say no. However, FMD is a disease of women in the middle to later years of life, and these are the patients at risk for osteoporosis, so osteoporosis is not uncommon among older, female FMD patients.

Nature: Can FMD cause tremors? If so, how? What is the significance of tremors? How are they treated?

Dr__Gornik: FMD is not usually associated with tremors, but I think you should talk to your doctor/neurologist about this. Some patients with prior dissection might have tremors, but it is not common in our FMD patients. I would look for another cause (medications, other neurological problems).

amedeane: I have active, not well controlled rheumatoid arthritis as well as internal carotid and left renal FMD involvement. Is it possible that there is a link between RA (understanding it's impact and attack on soft tissues) and FMD?

Dr__Gornik: I don't think they are directly related, though I do have a few FMD patients who also have RA.

Nature: Is there any association between FMD and Alzheimer’s, Dementia, Parkinson’s, Depression, or Anxiety?

Dr__Gornik: I don't know of a link with FMD and Dementia or Parkinson’s and am not seeing a signal of this in my patients. AS for depression/anxiety, I do see that many of our FMD patients have some mental health issues. This is an active area of interest in our FMD clinic, and we also work closely with Dr. Leo Pozuelo and Dr. Karen Broer (psychiatrist and psychologist) in our FMD clinic.

Nature: I have read that FMD is not caused by inflammation; is that true? I understand that researchers are finding that most diseases are caused by inflammation.

Dr__Gornik: Dear Nature, we don't think of FMD as inflammatory. We do check a CRP (c reactive protein, a blood test for inflammation) on our FMD patients here when we first see them, and in general it is normal (i.e., no inflammation).


Conclusion

Cleveland_Clinic_Host: Thank you for coming today.

Heidi50: Thank you!

Pam_Mace_RN: Thank you for chatting today. We look forward to seeing you at the FMDSA conference in Cleveland in May. You can learn more about the conference on our website www.FMDsa.org . We are going to try to tweet from some of the talks for those of you who cannot attend, but please remember that tweets are limited. #FMDSA

Dr__Gornik: Great chat, as always, and terrific (and somewhat challenging) questions. I'll look forward to the next chat down the road. HG.

Reviewed: 04/12

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