Fibromuscular Dysplasia (FMD) (Dr Gornik&Pam Mace RN - FMDSA - 4 11 13)
Heather Gornik, MD Cardiologist and Vascular Medicine Specialist,
Robert and Suzanne Tomsich Department of Cardiovascular Medicine,
Sections of Clinical Cardiology and Vascular Medicine
Thursday, April 11, 2013 - 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 isn't a cure, it can be treated effectively. Dr. Gornik and Pamela Mace, RN, President of FMDSA answer your questions about FMD.
FMD: Diagnostic Testing, Prognosis, Progression
fmdk: When we are told, that FMD does not usually progress I assume that means that new vascular beds do not develop later. But existing vascular beds always have the potential for progression, is that correct? Newly diagnosed with FMD in carotid and renal arteries as well as aortic enlargement. Do you recommend that patients avoid massage therapy?
Pamela_Mace,_RN: Dear FMDK, I am aware of a few cases where FMD has progressed and typically that is with patients that have intimal FMD and not the medial FMD that about 90% of the patients have. Dr Gornik may have a better perspective on this.
Heather_Gornik,_MD: There is potential for FMD to progress within existing areas, but in my opinion this is not common, at least with medial fibroplasia or classic string of beads type FMD. When there is rapid progression, it is often due to a dissection. When FMD “shows up” in a new area, this is usually because it wasn’t thoroughly evaluated in the first place rather than it “growing”.
As for massage, I think usual Swedish massage is fine for FMD patients. Need to be cautious if you have a history of arterial dissection or are on blood thinning medication. Tell your massage therapist about your artery condition. If you have carotid/vertebral FMD, the therapist should know you have a vascular problem when approaching the neck. Like all massage, would definitely recommend working with a properly trained and licensed therapist.
chinni: Hi Dr Gornik and Pam, I am a second year resident in family medicine, was preparing for a presentation on FMD - carotids and found this website, very impressive!! Could not find lot of literature on imaging and prognosis, would really appreciate if you could give your input on the following:
- Was wondering if there is any data about the sensitivities and specificities of ultrasound vs. CTA vs. MRA for diagnosis.
- Also any data on prognosis and success of different management strategies ( medical vs. Balloon vs. stent ) and recurrence rates.
Heather_Gornik,_MD: Wow - thanks for your interest. See an abstract we did at ACC in 2011 on Prognosis in FMD and procedures - this is being updated with more information on the registry. As for specificity and sensitivity of various imaging technology - sparse literature but groups are working on this.
Pamela_Mace,_RN: We have links to the abstracts presented over the last years on our website and you may also want to pull the article from Circulation that was published in 2012 with the data from the FMD registry which is also on our website - www.fmdsa.org. Contact me if you are having trouble locating these.
Cleve1996: I have never heard of this, does this only affect the arteries? What test do you do for them. I don't have headaches but have pulsatile tinnitus. What causes it or is it like blocked arteries? I quickly glanced at it and saw Weinberg images. Do MRAs without contrast work or do you have to have contrast?
Heather_Gornik,_MD: Hi there. We are talking about FMD which is an uncommon artery disease that affects arteries to the brain, and kidneys most commonly. It is different from plaque or atherosclerosis. Pulsatile tinnitus or a swoosh in the ears can be caused by many things including FMD. A good place to start may be a carotid ultrasound test and a check by an ENT doctor. You may also be interested in a website about pulsatile tinnitus called whooshers.com.
zebra girl : Do you have any information on the long term prognosis of intimal FMD. Mine has been found in arteries that were previously clear. Thank you.
Heather_Gornik,_MD: We are learning more about intimal FMD. It tends to be somewhat more aggressive in terms of narrowings/blockages. My sense is that it is less associated with dissections and aneurysms but this needs to be proven with the data. The FMD Registry is collecting information by FMD type - so stay tuned.
Pamela_Mace,_RN: Dr. Kevin Meyers published a great article in CathLab Digest on adolescents with FMD which the majority of the children have intimal disease. It is something you may be interested in.
hwatsonnia: hello, I am a 52 YO female with FMD in internal carotid and vertebral arteries (C3) - dissection and aneurysm with up to 50% stenosis. I am being followed by an interventional radiologist and the only restrictions I have been given are chiropractic, and jerky movements. He says go on with your life, this won't kill you. I am on a daily aspirin. Does this sound like a reasonable plan of care?
Heather_Gornik,_MD: I am happy to say it does. Need to check you for aneurysms in other vascular areas and I would periodically re-image the dissections but I am very happy to say I have not had a patient die of FMD related complications.
Pamela_Mace,_RN: I agree with Dr. Gornik. I do think it is important to have yearly follow up and if new symptoms would arise - it is also important to share this with your physician in case further testing is needed.
Cleve1996: Having Pulsatile tinnitus, ENT recommended MRA. He said with contrast, however most hospitals didn't do with contrast so mine was done without. Are MRAs valid without contrast? Also I saw someone mention infundubulin, does this pertain to FMD? (An infundubulin showed up on a non contrast MRA 4 years ago had rechecked and was told I didn't have to come back.
Heather_Gornik,_MD: Non-contrast MRA also called time of flight MRA, is ok to check for most vascular causes of tinnitus but accuracy for detecting FMD and dissections will be improved with contrast (Gadolinium). Infunibulin is a small vascular out pouching that needs to be differentiated from an aneurysm which is why you had a re-check.
jkasper: So yearly testing should be done on both carotid and renal arteries. Should they be done at the same time or separate?
Heather_Gornik,_MD: I don't think there is a right answer for this - it depends on how often you are seen for clinical visits - many of my FMD patients get imaging once a year but see me two or three times a year in the office.
Symptoms: Tinnitus, Pain, Other
hopeful: Thanks so much Dr. Gornik and Pam for doing this for us. I was wondering if anything new has come around as far as hearing aids. I hear buzzing bees in my right ear now and the heartbeat still in the left. Just wondering, waiting, and hoping. I can't wait for our conference and my upcoming appointment. Love to you both, Ronni.
Pamela_Mace,_RN: Hi Ronnie, nice to hear from you. I am not aware of anything new with hearing aids to block out the tinnitus. I am looking forward to hearing Emma Greenwood's talk at the annual meeting on Pulsatile Tinnitus. You might be able to find information on her web site at whooshers.com.
Heather_Gornik,_MD: Hi Ronni. Thanks for your participation in these chats, as always. Nothing specific on the buzzing bees front, other than the fact that tinnitus is very common in our FMD patients. We continue to work with audiology here at Cleveland Clinic, and if you haven’t done so already, you might want to see them. Also, tinnitus will be a focus of a talk at the FMDSA conference meeting in May. See you soon.
scottie: Does your experience with patients at your clinic show any pattern of pain linked with FMD- affected vessels? Or perhaps with dissected vessels or with aneurysms? I have had neck pain since my internal carotid dissection/aneurysm 3 years ago. I did not suffer from neck pain at all prior to that.
Heather_Gornik,_MD: Dissection is definitely one of the most common causes of pain in FMD patients. Including carotid or vertebral or renal artery or mesenteric artery dissection. This can be a quality of life problem for many of our patients. We often work with our headache and neurology colleagues for medical therapies to help with pain. Even patients without dissection can suffer with pain especially headaches. Most of our patients can get their pain under good control with medical therapy and still lead a good quality of life. Some patients have no pain.
Pamela_Mace,_RN: Data from the FMD registry showed that neck pain was one of the most commonly presenting symptoms from FMD patients.
Heather_Gornik,_MD: You are not alone Scottie!
zebra girl : Hi. I know that, like with any disease, FMD can get the blame for symptoms that are caused by other illnesses or general aging, and realize that I can’t be paranoid over every ache. I am however concerned by the common response from doctors, that FMD does not cause pain. I have multi vessel FMD, and have had mild to severe pain, that has usually been resolved by angioplasty. Unfortunately, it took the removal of one kidney to have the flank pain removed. If an artery is stenosed enough, or occluded, then isn’t ischemia or claudication or pain a normal consequence?
I have read previously on chats that we should look for other causes for our pain, but shouldn’t we and our doctors at least rule out FMD first, by testing? especially if the area causing pain has an artery affected by FMD. I know I may be a rare case, but I’m concerned. My iliac, renal, and brachial FMD all caused pain, which vanished after angioplasty or surgery. I have intimal FMD, which I'm aware is less common too. So, I suppose, in short.. do you believe FMD stenosis-occlusion-aneurysm should be considered as a possible source of pain in FMD patients, and, if so, is there any current research on this matter. Thank you.
Heather_Gornik,_MD: Dear Zebragirl. You raise some important issues. This is challenging. I follow dozens, if not hundreds of FMD patients who don't have pain related to beaded arteries and narrowings and a minority who do. In most patients, chronic pain due to FMD is related to dissection. The exception to this is the headache and neck pain we see in carotid FMD patients and also some of our renal FMD patients (again a real minority) have flank pain. We need more research here. Importantly, ruling out other causes of pain. I do not advocate angioplasty procedures as treatment for pain syndromes --- need to remind the chatters that angioplasty can be very helpful when performed for the right reason, but we also see complications of angioplasty, so they are not without risk.
mkathy: I have carotid and renal FMD. I also have headaches. There will be months when I don't have headaches and then periods where I have them almost every day. Is there any information on why this happens? After my one and only angioplasty, my headaches improved quite a bit. I am on 5 BP pills. I am 68 years old.
Heather_Gornik,_MD: I would want to make sure that your headaches are not related to high blood pressure - do you check your BP during headaches?
Pamela_Mace,_RN: My suggestion would be to be evaluated at a headache clinic such as the one at Cleveland Clinic because they see so many FMD patients there.
fmdk: Is there anything safe to take for pain (not Headache) besides Tylenol. For example after an ER visit requiring pain medication.
Pamela_Mace,_RN: I think it depends on the type of pain and severity of pain what you would need to control your pain. Again as Dr. Gornik has recently stated with NSAIDS anyone with renal impairment or function needs to be cautious.
Heather_Gornik,_MD: Again a consultation with a pain management specialist, preferably one familiar with FMD may really help your quality of life.
hopeful: With the carotid FMD when I feel the booming sensation in my head and neck I always take my blood pressure and its normal. Aside from this, no stroke symptoms, thank heavens, just wanted to ask if any other patients have these exact symptoms too.
Heather_Gornik,_MD: Thanks for clarifying some of our carotid FMD patients do report pulsation in the head and neck so you are not alone.
Pamela_Mace,_RN: We have a lot of patients that have different types of sensations, not all patients have had dissections but may be just carotid FMD - we do have an INSPIRE support group where specific questions addressing headache and symptoms are asked and patients respond - you may find this informative. The link to the INSPIRE support group is also on the home page of the website.
Hopeful: My Mom now is diagnosed with dementia can the FMD in her brain and carotids contribute to this?
Heather_Gornik,_MD: FMD is not known to be associated with dementia, although if she has very severe cerebrovascular FMD and especially if she had a prior stroke, this could be a contributor.
DSPRAT: Is it common to have daily pain? My husband has renal and intestinal FMD, which was diagnosed just under a year ago. He has bilateral renal artery infarctions and dissection of the superior mesenteric artery with mild aneurysm formation and experiences pain every day.
Heather_Gornik,_MD: Unfortunately, arterial dissection is an important cause of pain in FMD patients. If he is not doing so already, he should be evaluated by a specialist with expertise in FMD. It would be important to assess the size of the aneurysms/pseudoaneurysm he has and if there are any severe narrowings in the abdomen that might benefit from an angioplasty or stenting procedure (for dissection).
Blood Pressure and FMD
scottie: Thank you for this opportunity to ask questions today. Many of us FMD patients seem to experience BP surges, when the BP goes high for a time and then reverts to a more normal level. What is the mechanism for this and why does this happen more readily in FMD affected patients than in the general population?
Heather_Gornik,_MD: We notice this as well in some of our FMD patients and call this labile hypertension. What is tricky is that it is also seen in patients with other conditions - not just FMD; including atherosclerotic renal artery disease and even essential hypertension. I am not completely convinced this is specific to the FMD population.
New Jersey: If both carotid arteries are in the 60-79 stenosis range due to FMD, does this warrant going on medication or having surgery? (History is loss of one kidney function and bypass on remaining kidney in Aug. 1999 due to FMD).
Heather_Gornik,_MD: This is an important point you raise. First of all the % stenosis categories that are put on ultrasound reports are for plaque related blockages (atherosclerosis), not FMD. All FMD should warrant medical therapy --- generally antiplatelet therapy with something like aspirin, but we do not intervene/angioplasty carotid FMD unless a patient has symptoms due to blockages, regardless of how high those ultrasound numbers are. This is different than plaque related disease where carotid endarterectomy or stenting in some cases is done because the blockages are severe, even if there are no symptoms.
RLMSLL: I was recently diagnosed with FMD within the bilateral internal carotid arteries. My optometrist detects a possible oxygen delivery issue indicated by a thinning of the cornea and optic nerve, and I have an appointment scheduled with an ophthalmologist in two weeks. Is there any possible connection with FMD such as FMD within ophthalmic arteries?
Heather_Gornik,_MD: This would be somewhat unusual unless the degree of blockage is very severe, and I would be concerned that there is another explanation other than FMD. I might suggest testing to evaluate the degree of flow into the eyes. A test such as transcranial Doppler (an ultrasound test) with evaluation of the ophthalmic arteries can accomplish this. Being evaluated by an FMD specialist would be helpful.
Pamela_Mace,_RN: I am only aware of a couple of FMD patients that have issues with their ophthalmic arteries and I am not sure that it has been linked to their FMD.
Zigzag: Are there autoimmune diseases associated with FMD? Is FMD ever found as a result of having an underlying autoimmune disease?
I am a 60 year old female and my intracranial right ICA dissection has not healed. It is now 6 months since symptoms appeared. What should I expect at this point? I have a history of upper back/shoulder/lower neck problems. My right ICA dissection and FMD areas in both ICA's are above these areas. Is the pain in the upper back/shoulder/lower neck from the FMD?
Can it be determined how long one has had FMD? A vascular surgeon that I saw mentioned that there is a possibility that some FMD is an in-utero event. Can that be determined? Can the severity of FMD be determined?
Heather_Gornik,_MD: Lots of questions there. In general we do not think that FMD is autoimmune or inflammatory. We do not know when FMD first develops. I think it probably develops in the young adult years or middle age in most patients. In the FMD registry, the average age of diagnosis of our FMD patients was about 50 - 55 years. In terms of the dissection and healing, it is hard to predict for the individual patient although my sense is that dissections that have not healed after one year may not ever fully heal. More important that you are doing well clinically with no repeat events and that things have not worsened on the imaging studies.
Pamela_Mace,_RN: At this point your doctor should continue to follow you and order follow up imaging and treatment based on the symptoms you are having - if any. After my dissections, I had imaging every three months for the first year but I was symptomatic. Many patients that I know that have dissected never require treatment. Most patients do follow up and have annual imaging.
mKathy: Is a dissection caused by blood pressure getting too high?
Heather_Gornik,_MD: The cause of a spontaneous (non traumatic) artery dissection is not known. It is possible that uncontrolled high blood pressure contributes, but unfortunately, dissection in FMD patients can occur in patients with normal blood pressure and is most likely due to an underlying weakness in the artery wall.
scottie: I read that intimal FMD is possibly less associated with dissections and aneurysms. Do you think that this is possibly due to the fact that intimal is diagnosed mainly in younger patients? It is interesting that most folk are diagnosed in their late 40s or 50s and often with a dissection prompting diagnosis. Is it possible that, as the vascular system gets older, these dissections and aneurysms can happen in FMD anyway-and maybe type is less significant?
Heather_Gornik,_MD: Good questions - a lot unknown here. We do know that between 15 - 20% of FMD patients have a dissection. More common than you may think - but still the minority (fortunately).
Spontaneous Coronary Artery Dissection (SCAD)
Charlotte: My sister had SCAD. When I look online it says it can be from FMD. What do I tell her as far as looking into this - are there definitive tests to find the cause? she is 33 years old. she is healthy and a runner.
Heather_Gornik,_MD: Charlotte - I am so glad you asked this. SCAD is spontaneous coronary artery dissection. This is a rare condition that can cause unstable angina or heart attack. Through the work of Chris Bueller and Jackie Saw (Cleveland Clinic alum) in Canada we have learned that many patients with SCAD have FMD in one or more of their vessels. I now think that all patients with SCAD need to be checked for FMD from brain arteries to iliacs. How this can be best accomplished depends on the expertise of the clinical center locally. This is a scary condition but I am happy to say that it is very uncommon among patients we follow at the Clinic.
Pamela_Mace,_RN: I agree with Dr. Gornik. It is uncommon but I am aware of some patients with SCAD. We do have some of the data on the website from Dr. Jackie Saw - www.fmdsa.org and she will be discussing this at our conference in May.
FMD in other vessels: Renal, Splenic, Messenteric, Subclavian arteries
scottie: I have left subclavian artery occlusion, amongst other affected arteries-cervical and renal. This has been shown on MRA and by ultrasound. Apparently I have good collateral circulation which means my arm is not ischemic. Does this blockage of the subclavian mean that taking my BP in my left arm is less accurate?
Heather_Gornik,_MD: Great question Scottie - I will start by saying that FMD in the subclavian arteries is uncommon unless it is the intimal or peri-medial types of FMD. Medial fibroplasia (string of beads) type of FMD most commonly involves the brachial arteries. That being said, you definitely want to have your BP monitored in the right arm as the left arm readings will be falsely low.
Junie2430: My doctor said I have renal artery stenosis based on ultrasound and a bruit he heard in his office. Next week going for MRA. Is that the best test to find out if I have FMD of my renal arteries?
Heather_Gornik,_MD: The best test depends on the local experience with imaging in your area and MRA is perfectly fine. The only way to diagnose FMD with 100 percent accuracy and determine severity of narrowings is with a conventional renal angiogram with assessment of pressure gradients across the renal arteries. If you don't have hypertension I would not recommend an angiogram or angioplasty in most cases.
FMDSHANE: I am a 74 year old retired RN diagnosed in 2005 with severe renal FMD. My treatment has included three renal angioplasties, a right renal stent, and cardiac catheterization. Diagnosed with malignant hypertension and bilateral nephrosclerosis the physicians have attempted to stabilize my blood pressure elevations by placing me on a number of anti-hypertensives. I was finally stabilized on Lisinopril 20 MGM BID; Benicar 20 MGM DAILY; Metoprolol ER 100 MGM BID; Amplodipine 10 MGM DAILY; Tekturna 300 MGM DAILY; Clonidine 0.2 MGM (2 patches transdermal) weekly; Hydralazine 50 MGM QID and Clonodine 0.1-0.2 Mgm PRN. In November of 2011, I had a reaction to the Lisinopril (angioedema of lip/face) so my Benicar was increased to 40 MGM but my systolic BP was over 180-190.
The physician discontinued the Benicar and started me on Edarbyclor 40 Mgm/12.5 and I was able to maintain a BP of 118/68-132/70 and stop taking the Hydralazine and prn Clonodine dropping down to 5 medications from 8.
My question is about Edarbyclor- it states if a patient has anuria or worsening renal function that it must be discontinued. In spite of my nephrosclerosis, my BUN and Creatinine are normal. My nephrologist has been ordering my blood studies every 6 months. Is that frequency acceptable? I am the only patient that my three physicians has on Edarbyclor and it is a newer medication so they do not have other patients to compare my experience with.I appreciate the opportunity to be able to ask you a question- thank you so much for your ongoing commitment to FMD patients.
Heather_Gornik,_MD: Wow - I am so sorry about your major blood pressure issues. I do not have much experience with that new drug - Edarbyclor. It is very difficult for me to comment on how frequently your renal function needs to be checked without seeing you. I would want to make sure your renal FMD was re-evaluated recently to make sure it is not playing a role here.
Linda-Lou: I have FMD of multiple arterial areas. The renal aneurysm is calcified, 1.3cm, and now see that I have calcified aneurysm of splenic artery. What is the significance of the "calcification," and what would the symptoms be for splenic artery FMD? I have aching in mid back, nausea also but attribute that to multi antibiotic treatment from MAC lung disease. Thank you.
Heather_Gornik,_MD: We see splenic arteries in some of our FMD patients, even if there is not classic FMD/string of beads there. IN general these do not cause symptoms. We generally repair these when they approach 2 cms in size, perhaps smaller for a woman who has not yet had children. Calcification is common and does not mean too much. Splenic aneurysms, like all aneurysms in FMD patients, need to be followed periodically with imaging studies (such as CTA or MRA).
GlendaKMO: Hello. My daughter was in the hospital with very high blood pressure. Prior to this very healthy. She had many tests and found to have FMD affecting her renal, mesenteric arteries and also her carotids. She is being treated with medications right now and normally her blood pressure is ok but when she exercises her heart rate goes very fast. we have taken her blood pressure and it can be up to 170s or 180s and she gets a headache. So she is not sure what to do next. She is 30 years old and wants to get back to exercise. We live in Missouri - would be willing to come up there if it would be worthwhile to see an FMD expert.
Heather_Gornik,_MD: We would be happy to see her. Patients with renal FMD most likely to have a curative response to angioplasty are those who are younger without other cardiovascular risk factors and of normal body weight.
believer1955: I have history of multiple aneurisms with one surgery of the descending aortic surgery and 2 brain surgeries. Also, I was diagnosed in 2008 with Fibromuscular Dysplasia. Now, I have an small half dome-shaped 2.5 mm aneurysm which arises from the right internal carotid artery just proximal to a fairly large2-3mm infundibulum associated with the right anterior choroidal artery origin. I would like to know if I can do a flight from Orlando to Cleveland. Also, What is the best option for this aneurysm: surgery or coiling and what is an infundibulum? Thanks!!!!!
Heather_Gornik,_MD: Dear believer. I'm afraid it's impossible to give you information on the need for surgery or coiling without really reviewing your angiograms and examining you and having you evaluated by one of our neurovascular interventional specialists. Please contact our offices to try to arrange to see you here. I wish you all the best.
Pamela_Mace,_RN: I am aware of many patients with aneurysms that do fly, I actually have not heard of anyone being told that they could not. If you have concerns you should speak with your physician who is familiar with your complete medical history. As far as treatment options that is something you would have to speak with your physician about as again he/she has a better understanding of your complete medical history.
FMD in Men
mjmmfletch: My husband recently had a stroke which was attributed to FMD. He is 50 years old and otherwise in good health, no stroke risk factors that we knew about prior to this. Is there an FMD "supercenter" I should have him checked at? How do we ensure this doesn't happen again? And should I have my children checked out as well?
Pamela_Mace,_RN: I am sorry to hear about your husband's stroke. There are several FMD Clinic's set up in the US including the one at the Cleveland Clinic. There are also other centers that participate in the FMD Patient Registry, they tend to see more FMD patients than most physicians do. Here is a link to our web site with more information http://www.fmdsa.org/patient_support/patient_registry. As a patient myself, I do suggest having an evaluation at least once by a physician who really knows FMD. I know it's made a difference for many patients.
As far as having your children checked for FMD, I think it depends on their age and any relevant medical issues they may be having. If you have a child diagnosed with high blood pressure at a young age or a history of headaches you might want to speak with the physician and determine if there should be an evaluation for FMD. I am aware of less than 15 families that have more than one family member affected by FMD.
Heather_Gornik,_MD: I am sorry to hear about your husband’s health issues. FMD is less common in men than in women, but can occur. The usual mechanism for stroke in FMD would be a dissection of an artery or an aneurysm, less so a clot. His neurological imaging, such as CT angiogram or MRA would establish the diagnosis. I think it is important that you husband be evaluated by a neurologist with special interest in cerebrovascular disease/stroke. Certainly we can see him here for an opinion as well.
Angioplasty and FMD
BlalockLisa: I am a 48 yr. old female and about 13 yrs. ago I was diagnosed with FMD. I underwent angioplasty on both kidneys at Centennial Medical Center in Nashville, TN. I have been on blood pressure medication ever since with no other history of high blood pressure in my family. My question is: Will I ever have a reoccurrence FMD again? Or has there ever been a reoccurrence of FMD in a patient that has had renal angioplasty? Thank you, Lisa Blalock.
Heather_Gornik,_MD: Dear Lisa. By description, you most likely had intimal fibroplasia, which is the most common type of FMD we see in children. I would recommend some follow-up of your kidney arteries. My sense of the literature is that there is a ~ 25% renarrowing rate after angioplasty procedure. FMD patients need to be followed up even after angioplasty.
Pamela_Mace,_RN: Hi Lisa, I am aware of patients that have had to have more than one angioplasty and they are also still on blood pressure medication, there are several patient stories on our web site. I would start with Jodi Roth's story.
SBRD: At what percent stenosis is angioplasty indicated for carotid FMD?
Heather_Gornik,_MD: I am so glad you asked this important question. I want to emphasize that those % stenosis numbers on ultrasound reports are really not accurate for FMD. For carotid FMD we never do an angioplasty in the absence of severe symptoms. This is completely different from atherosclerosis/plaque where we treat a patient with a > 70 or 80% blockage to prevent a stroke even if they have no symptoms. Atherosclerosis is entirely different from FMD --- again for FMD good news no need for endarterectomy or carotid angioplasty/stenting in most patients with carotid FMD who usually do well with just medical therapy (antiplatelet).
FMD: Steroids, NSAIDs
zebra girl : I have read some research suggesting FMD patients should avoid cortisone therapy. Do you know if this would include inhaled corticosteroids, such as is used for asthma?
Heather_Gornik,_MD: My main concern with any steroids is blood pressure control. I have some FMD patients who need steroids for various indications and we generally think this is fine but monitor blood pressure closely.
fmdk: It was suggested that FMD patients avoid NSAIDS but Tylenol is OK. What do we take if Tylenol is not enough?
Heather_Gornik,_MD: You need to work with your doctors and if you are referring to headache pain - a headache neurologist may have some great suggestions to help your pain and quality of life. The issue with NSAIDS is that they can impair kidney function which we do not want to do in anyone - but especially with someone with renal FMD.
Genetics and FMD
mkathy: Is there any new information on genetics and FMD?
Heather_Gornik,_MD: We published our Cleveland Clinic experience with standard genetic panels (Ehlers Danlos, Loeyz Dietz) in FMD patients and found this to be low yield . We continue to store blood samples as part of a biorepository for future collaborations once we reach a critical mass. I know Dr. Santhi Ganesh is currently working on additional studies related to FMD genetics. You may wish to Google her name at University of Michigan.
Pamela_Mace,_RN: There is a research page on our website along with research abstracts that have been published - however there is no new data as of yet. As Dr. Gornik mentioned there is Cleveland Clinic - Mayo Clinic repository and Dr. Ganesh will also be drawing blood in this year's meeting for anyone who is willing to participate in the U of M research. The NIH study is still ongoing and Dr. Ganesh has been collaborating with the NIH and should be speaking about this topic at the annual meeting.
Heather_Gornik,_MD: I know patients must be frustrated that the FMD medical community has not yet figured out the genetics of FMD - I think it is important for people to understand when dealing with an uncommon disease - it takes time to accrue adequate data. In addition there have now been a lot of exciting advances in the genetics field technically which will hopefully move things forward.
Barriers to research also include the need for funding for specific FMD projects - I am excited there is now a critical mass of clinicians such as myself and Dr. Olin and others who are talking to researchers such as Dr. Kullo and Ganesh and McDonnell and others to coordinate efforts. We are planning an FMD scientific conference here in Cleveland in the near future to bring everyone together and we will be talking about FMD genetics in detail.
hopeful: Please give a general reminder to everyone attending the conference from out of town to please make sure they get all their medical documentation from all physicians faxed to you. Just my two cents.
Heather_Gornik,_MD: Thanks for that - but to clarify - that is only patients being seen in the FMD Clinic at Cleveland Clinic during the meeting week by Dr. Kim or myself.
Pamela_Mace,_RN: For general people attending the meeting - no need to bring records. We would hate for you to unnecessarily bring them and then lose them.
amedeane: First thank you for what you're doing. These chats give us patients an opportunity to ask our own questions but to also see answers to questions that would benefit us as well but we didn't think to ask our own doctors. I was diagnosed with bi-lateral ICA and left renal FMD approximately a year ago. I have been registered as an organ donor since getting my first drivers license. I just wanted to know if barring any other as yet unknown reasons to disqualify my organs for donation on my death, would FMD be a reason to not donate any healthy organs when I die? Meaning now that I have been diagnosed with FMD should I change my drivers license, medical advanced directive and tell my immediately family to no longer indicate myself as a donor?
Pamela_Mace,_RN: Great question. I don't think that having FMD necessarily would disqualify you from organ donation. I am even aware of a few patients that have FMD that were approved to donate a kidney to someone. As an ER nurse when we have to call lifebanc, we give them the medical history of the organ donor and they make the decision on which organs can be donated. I am sure they would be happy to answer any questions that you have 888.558.5433.
Heather_Gornik,_MD: Thank you amedeane for your question. I’m so glad you find these chats helpful. We enjoy doing them. I think it is terrific that you have decided to be an organ donor, but I am afraid I do not know of any data specifically focused on organ donations and FMD. FMD does not tend to involve certain vascular areas such as the liver or the corneas or even the heart arteries in most cases. The kidney arteries might be an issue potentially, but again, I just don’t have enough information. You might consider contacting UNOS, the United Network for Organ Sharing --- www.unos.org.
Tazzy: Can Fibromyalgia be caused from falling into your while it is in a twisted position causing pain that last over 10 minutes? Strengthening Therapy makes it hurt more. stretching and ultra sound help but as soon as weight is added it gets worse again. I also have pain in opposite wrist , not from fall but possibly over use. I also have restless leg syndrome. Could these all add up to fibromyalgia but mistaken for other things?
Pamela_Mace,_RN: To my knowledge fibromyalgia and restless leg syndrome are not related to the diagnosis if FMD. I would recommend finding a specialist familiar with these disorders such as rheumatology to be evaluated.
Heather_Gornik,_MD: That is the other "fibro" definitely not fibromuscular dysplasia and I agree they are not directly related although I have a few patients unfortunate to be afflicted by both.
Heather_Gornik,_MD: I hope to see some of you in May at the FMDSA meeting. I will be there on Saturday and working the marathon on Sunday with my daughter Maxine. Need to start teaching the young ones early about FMD!
Pamela_Mace,_RN: Thank you for participating today. We look forward to seeing many of you at the annual meeting.
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