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Understanding Fibromuscular Dysplasia (FMD) – (Dr. Gornik & Pam Mace, RN, FMDSA - 12/19/13)

Dr. Gornik

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

Thursday, December 19, 2013 - Noon

Description

Fibromuscular dysplasia (FMD) is an uncommon vascular disorder often found in women between ages 30 and 50. It can be difficult to diagnose, but while there is no cure, it can be treated effectively. Heather Gornik, MD and Pamela Mace, RN, President of the Fibromuscular Dysplasia Society of America (FMDSA) answer your questions about the diagnosis and treatment of FMD.

More Information


FMD, Diagnostic Tests and Follow-Up

KK: Dr. Olin said in the past, that MRA of brain should be done on patients who have carotid FMD. I have renal, iliac and 50% right carotid FMD-stenosis, monitored 1X yr. at Univ Calif San Fran Vasc Clinic. Should I have an MRA or CTA, etc. of my brain because I have 50% stenosis in right carotid or not? My Dr. said no need because I had an unrelated MRA done in 2006 at a small town clinic "and they did not find any aneurysms." I also have iliac stenosis, worse on left side, w/symptoms of constant numbness in three left toes for past four years, and occasional, transient, middle-of-night numbness of left fingers, scalp and ears. No other related symptoms. Dr. said she did not know why that is happening, did not relate it at all to my iliac stenosis or FMD, w/no further suggestions to me. Could FMD cause these numbness symptoms? What, if any, FMD-provider testing/follow-up should I get on this? I have an appointment w/Neurologist soon to also check this out. Thank you.

Heather_Gornik,_MD: Based on research from the FMDSA sponsored US FMD Patient Registry, we now screen all FMD patients once for aneurysms throughout the body in our Cleveland Clinic FMD Program. This can be accomplished with MRA or CTA. Based on findings, a surveillance/follow up program can be put into place which is generally simpler than screening all of the vessels from the brain to the upper portion of the legs. As for iliac artery FMD, for those on the chat, this is the external iliac artery that supplies blood to the legs. A significant percentage of FMD patients have external iliac artery involvement; in most cases it doesn’t cause symptoms or just causes a bruit that the doctor can hear over the upper leg/groin area with a stethoscope. Sometimes, external iliac FMD can cause leg symptoms --- a simple test known as the ankle-brachial index where blood pressures are measured in the legs, sometimes before and after exercise on a treadmill, can be done to tell if the external iliac FMD is causing impaired flow to the legs and leg symptoms.

lcrw4d: I was diagnosed with FMD of the abdomen in 2009, and I haven't been looked at since. I am on blood pressure meds. Should I be finding someone to look after me?

Heather_Gornik,_MD: Yes, you definitely need to be reassessed... five years is too long.

Mmom: Can you explain what this means?
CTA - report from the doctor, Chronic complete occlusion on left M-stem (M1 segment with large collateral flow from the left recurrent artery of Heubner providing circulation of the left middle cerebral artery circulation. There is occlusion of short segment of the L M2 branch of the left middle cerebral artery with evidence of some collaterals causing ablation of the inferomedial aspect of left temporal lobe. FMD in the internal carotid arteries and MRA reportedly showed distal L ICA stenosis in a Moyamoya pattern. He doesn't think the FMD could account for my symptoms..Moyamoya could more likely do so.
MRI without contrast - showed Brain history: 435.9 Unspecified Transient Cerebral Ischemia.
Mild chronic ischemic small vessel degenerative white matter lesions.
Symptoms are dizziness, fatigue, memory problems, and confusion. ice pick pains in my head, flank pain. blood pressure is normal pulse runs anywhere from 85 to 110.

Heather_Gornik_MD: Dear mmom --- the report describes narrowing/complete blockage of one of the vessels on the left side of the inside of the brain or intra-cranial disease. MoyaMoya is a term used to describe narrowings inside the brain and can be due to many causes, including sometimes FMD. Without reviewing your case and films in detail, it is difficult to know if your symptoms and/or imaging findings could be due to FMD.

Mmom: What scans should I request from my doctor to check for FMD since it is in my carotids.

Heather_Gornik_MD: In our Cleveland Clinic FMD program, our current approach is to image FMD patients from brain to pelvis (iliac arteries) and examine the brachial arteries and lower extremity arteries with physical examination. This can be accomplished with CTA or MRA and ultrasound can be used to assess the carotid and abdominal vessels. Once all of the vessels are “mapped” in terms of what vessels are involved, future surveillance imaging is more targeted (i.e., if just carotids are involved can image carotids with an annual ultrasound), but we do now recommend a more comprehensive one time imaging assessment, mainly looking for aortic and branch artery aneurysms, but also other findings of FMD.


Aortic Root Dilatation

fmdk: I am a 69 year old FMD patient (carotid and renal arteries) with aortic root dilation. Would it be considered safe to have a heart cath. in an emergency (ex. heart attack) if recommended by local cardiologists? Also, I rarely had headaches before diagnosis eight months ago. Both Losartan, Lipitor and FMD are reported to cause headaches. How do I know if it is FMD or one of the drugs taken to treat it that are causing the headaches. They often occur at the same time each day. Does an increase in the pulsatile tinnitus mean that the FMD is progressing?

Heather_Gornik,_MD: You have a number of great questions in there. Cardiac catheterization can be done even in the setting of aortic root dilatation and for FMD patients, but of course, like all invasive procedures would want to work with an experienced cardiologists to weigh risks versus benefits of having a heart cath. As for whether your meds or your FMD is causing headaches, this is difficult --- certainly FMD (both carotid/vertebral and just renal FMD) is associated with headache. A headache specialist may be able to help you sort this out. Finally, you asked about increasing pulsatile tinnitus and FMD progression. My sense is that increased pulsatile tinnitus is more commonly due to either changes in environmental factors, which allow the patient to notice it more or hemodynamic effects (blood pressure, pulse, etc.). Rarely increased pulsatile tinnitus can be the sign of a dissection or other abnormality. I recommend that you discuss this with a specialist familiar with FMD to determine if repeated imaging is appropriate.


Causes of FMD and Life Expectancy

mslararey: Hi Pam and Dr Gornick, thank you so much for having these chats they are very helpful and it's great to interact. I have two questions. The first question is are you born with FMD or is it something that can develop at any time in your life, and only caught some time after complications? My second question is about the causes of FMD. I once met with a naturopath regarding food intolerance and I mentioned having FMD (mainly renal, then neck, a bit in the legs and stomach). She never heard of FMD but was very curious, she then said that dysplasia was often caused by inflammation (anywhere in the body). In your experience, do you think there might be a link between the two?

Heather_Gornik,_MD: Great questions. In terms of question number one, we have a long way to go to understand what causes FMD and when the changes in the artery first develop. That is why FMD research is so important. We are hosting a meeting here at Cleveland Clinic in May which will bring scientists and researchers interested in FMD to plan research collaborations to better understand this disease. As for your question about inflammation, it is generally accepted in the scientific community that FMD is NOT an inflammatory disorder.

Fmdk: Our son and daughter-in-law are considering having a third child. I have FMD in carotid and renal arteries with Marfanoid features, most notably enlarged aortic root. What are the chances that this might be a problem for their children?

Heather_Gornik_MD: We do have some patients in our clinical practice with aortic root enlargement and FMD. At this time, the genetics of FMD are poorly understood. There are a number of researchers currently investigating the genetics of FMD, including Dr. SanthiGanesh at University of Michigan. At this time, one might consider having your family members consult with a medical geneticist and genetics counselor who is familiar with both Marfan syndrome and FMD. These programs are available at many large medical centers.


FMD and Life Expectancy

McFarlane: Is the overall life expectancy less in patients with FMD?

Heather_Gornik,_MD: We do not have long term data on this question, but in early follow up from the US FMD Registry, mortality from this disease is low. I tell my patients here that I have yet to have a patient of mine die from FMD related complications. I have had two deaths in my practice of ~ 350 patients, and both were related to malignancy.

Pam Mace RN: I agree with Dr. Gornik and in my 10 years of speaking with patients, none of them have passed.


FMD and Carotid Arteries

Tad: Hello Dr. Gornik and Pam!! At the conference Dr. Olin mentioned that a good percentage of people with renal FMD have carotid involvement as well. I did have a carotid ultrasound done, that states I have 30 percent blockage of the right carotid, but they did not see any pathology. My own MD ordered cholesterol blood work, which have always been normal, so a waste of time in my eyes. Should I be pursuing further testing? I have frequent headaches, at times dizziness.

Heather_Gornik,_MD: The % stenosis number that is put on ultrasound reports applies to plaque blockage and not FMD. I would want to know that is what the 30% blockage truly means. If you have plaque in your arteries, this is not FMD, and I might well recommend a statin medication for you, even if your cholesterol is “normal”. We definitely would now also check your brain arteries and make sure you have been evaluated for aortic and abdominal branch aneurysms.

Freespirit: What physician specialist do you recommend a person with carotid FMD see? I have carotid FMD; it has not been recommended that I check for FMD in my arms and legs, even though I have symptoms of cold and numbness. Do you think my arms and legs should be evaluated for FMD? If so, what type of physician do you recommend? Thank you.

Pam Mace RN: I would recommend a neurologist and also a good vascular doctor. Greater than 50% of the patients that participated in the registry have more than one artery involvement so I do recommend that your other arteries are imaged such as the renal arteries.

Heather_Gornik,_MD: I agree with Pam. We are generally imaging our patients once from brain to the pelvic arteries and evaluating the arm and legs on physical exam. I don't think the specialty matters as much as the familiarity with FMD and vascular disorders.

Carolinablue: Hi Dr. Gornik and Pam. I am newly diagnosed with bilateral carotid FMD, and I'm curious to know if having FMD in the carotids (with no coronary involvement) causes an increased risk for heart attack in any way. I realize that there is an increased risk for stroke but was wondering about heart attacks specifically. Also, how effective is aspirin in stroke prevention with FMD? Have you known any patients to have been on a daily aspirin that later suffered a subsequent stroke? Do most of the complications that I hear and read about occur before the patient has had a chance to begin antiplatelet therapy? Thank you so much!

Heather_Gornik,_MD: We have no focused data on aspirin for stroke prevention in FMD --- we generally do this based on application of data from carotid plaque blockage studies to FMD patients. Most FMD patients in my experience do fine on aspirin. When recurrent events occur on aspirin, it is often more likely the result of something like a dissection rather than an aspirin failure or a true "clotting" type event. I hope someday we can do medical therapy trials in FMD patients, but we first need to continue efforts to diagnose this disease properly and identify the patients in the first place.

Pam Mace RN: Many of the complications that you are reading about is when a patient is first diagnosed with an event rather than when they are already diagnosed and treated.

Sophiemonique: Question: What should I look for, to determine if my blood pressure, and headaches, neck pain, is the start of a new dissection, or the typical pains of Carotid FMD?

Heather_Gornik,_MD: This is tough for many patients, but I think gets easier as you are imaged, your symptoms are managed, and you get to know what is your "typical" FMD headache/pulsatile tinnitus/head/neck symptoms versus something new? In my experience, among patients who have not had a dissection, developing one during follow up is uncommon. In addition, among those who have had a dissection, the repeat dissection rate is quite low, and gets even lower after the patient gets through the initial few months.

Sophiemonique: When I was first diagnosed with Carotid FMD, my renals were also checked, with no beading or FMD shown. Should I continue to have them checked, or if it wasn't shown then, I don't have it?

Heather_Gornik,_MD: We are now imaging our FMD patients once from brain to the upper leg arteries. If we don't see FMD in a specific area, we generally do not follow or repeat imaging every year.

Pam Mace RN: I agree with Dr. Gornik and medial FMD does not appear to be a progressive disease.

Gardanaar1: I was diagnosed with FMD of the right carotid artery in 2005 by ultrasound and put on baby aspirin daily. Since then my internist has not ordered any follow up studies. What should I do? What kind of specialist should I see? I live in the Raleigh NC area.

Heather_Gornik,_MD: You definitely need follow-up. We also now check the aorta and all other major branch vessels for FMD/dissection/aneurysm. I would recommend a vascular specialist at a major medical center.

Pam Mace RN: We do have a patient advocate who is also a board member who is also in the Raleigh NC area - her number is on our website under patient support.


FMD and Renal Arteries

Skippy01: Good afternoon Dr. Gornik and Ms. Mace, thank you for answering all our questions. On behalf of two patients in the Netherlands I would like to ask you two questions: 1. Anti-platelet therapy is not generally advised in our country because of possible bleeding complications with FMD, because it is different from atherosclerosis. We are wondering if this is the right approach? 2. Why is it sometimes so difficult to control renal hypertension, even after successful angioplasty of the renal arteries? Thank you for all your research!!

Heather_Gornik,_MD: Welcome to the Cleveland Clinic/FMDSA FMD Webchat! Among most United States FMD clinical centers, FMD patients are generally treated with antiplatelet therapy. I do not perceive the bleeding risk to be higher than that of other patient populations, and in some respects this is a lower risk group due to younger age. Your second question is a very interesting one. I think the issue is one of case selection. Unfortunately, in many cases patients not only have renal FMD, but also have factors associated with essential hypertension such as overweight, diabetes, and may also have a family history of HTN. Patients can have essential hypertension and have a renal “string of beads”. It is important to be sure that the FMD in the renal artery is truly significant. There can be prominent beads in a renal artery but no hemodynamically significant limitation to blood flow. In those cases, angioplasty is unlikely to help as it is unlikely that the FMD was truly causing the hypertension. In our center, we find pressure gradient measurements across the FMD lesions/beads to be helpful. If there is no fall in blood pressure across the kidney artery, an angioplasty is generally not performed.

GeorgiaNana: My name is Carol and I live in the Atlanta, Georgia area. I was diagnosed with FMD this past February. My question is what determines whether a patient will have an angioplasty or a stent when opening severe stenosis of renal artery. I recently had an angioplasty of my left renal artery with severe stenosis. I have FMD and also positive for Factor V Leiden, and was wondering if this makes a difference in decision to do angioplasty instead of stenting? Thank you for all you do. Carol N.

Heather_Gornik,_MD: Hi Carol. First of all, I don't think the Factor V Leiden is related to FMD. This is a common genetic abnormality associated with venous disease/DVT. As for renal artery FMD, whether or not to do angioplasty (at least our approach here) is determined by symptoms (HTN and for how long, how many meds, lack of other causes like obesity/diabetes) and also hemodynamic significance of the lesion. Patients can have classic renal "string of beads", but there is no real pressure gradient across the kidney artery and flow is normal --- in those cases, my sense is that angioplasty is unlikely to cure high BP. As for angioplasty vs. stenting, in general for FMD, we can treat with angioplasty alone. Stenting is reserved only for cases when there is dissection of the kidney artery or cannot successfully treat with angioplasty. In some severe cases, open surgery is still required, but this is uncommon.

Pam Mace RN: As Dr. Gornik stated, stenting is reserved for cases such as she has listed as well as aneurysms. There are risks involved and I am aware of patients who have had complications after renal artery stenting.

Joy2theworld: I am 27, recently diagnosed with FMD and will be undergoing open renal bypass on Monday @ Mayo. I have been working with renal specialists who are quite familiar with FMD, but are working on getting into see Dr. McBane sometime after surgery. My left renal appears advanced perimedial FMD, also in right renal less significantly, left gastric and hepatic. I just had an ultrasound of my carotids, which showed mild beaded appearance of my left ICA. What implications does this have and what restrictions/precautions does this give me? What do I need to watch for? Thank you so much for providing us with great information!!

Heather_Gornik_MD: Dear joy2theworld. I wish you the best during your surgery and recovery. Mayo Clinic is a terrific medical center. It is very common to find FMD in multiple vascular areas, and my sense is that it doesn’t necessarily mean you have a worse or better prognosis. In the FMD registry at least 1/3 of FMD patients have multiple vascular areas involved, and now that most centers are routinely screening most of the potentially affected areas with imaging studies, I think we will find more and more patients with multivessel FMD.


FMD in Brachial Artery

GMJ: I am a 62 year old male in Canada diagnosed with FMD in my brachial (right arm), ulnar and ulnar palmar arch (left arm) areas of my arms (it does not appear to not be in other vessel beds) and I've had complications from distal micro emboli (hands/fingers and feet/toes). In hindsight I have been having circulation problems in my arms for about five years prior to diagnosis. I am wondering how common is this form of the disease, and does it tend to be progressive? FYI I am scheduled in to CC in mid-January.

Heather_Gornik,_MD: Brachial artery FMD is one of the more common less common sites. We do see this and emboli to the hands can occur. Dr. Kim or I will look forward to meeting you soon to evaluate in detail.


FMD in Multiple Arteries or Locations

Katus: I was diagnosed with FMD four years ago when I saw my x-rays could not believe how my renal arteries are. I had a stroke in 2006 (and lost my hearing in my left ear) and kidney failure in 2009. I have HBP since I was 24 years old and every day is more difficult to control. Now my cardiologist found FMD on my neck and occasionally also feel buzzing in the ear. Is there anything I can do to prevent, this covers all my arteries. All this has me very worried.

Heather_Gornik,_MD: Dear Katus, I am sorry to hear about your health issues and I know that living with FMD can be very frightening. I suspect that the FMD in the neck may have been present for a long time before it was diagnosed. That is generally the case. FMD does not generally develop quickly --- when it is found in a new area of the body, it is generally because no one ever checked before. We are now checking all of our FMD patients one from the “brain to the pelvis” to identify areas of vascular involvement. Those areas that have FMD are followed, and those areas that do not have FMD do not have been followed as closely.

Salty: I have FMD in carotids and exterior iliac, and so far nowhere else. Can I expect it in other arteries? If I have no aneurysms now, am I likely to develop any? Is water aerobics or water running safe? I have family history of stroke and heart disease, walk a lot and do regular tread milling and some low impact aerobics. I understand that strenuous exercises may not be safe for someone with FMD. What constitutes strenuous?

Heather_Gornik,_MD: Dear Salty, as discussed above, you do need to be checked elsewhere, such as in the brain arteries and renal arteries --- we are now imaging our FMD patients comprehensively once from “brain to pelvis”. In general, moderate aerobic exercise such as treadmill, walking, and water aerobics are safe for FMD patients --- and terrific for cardiovascular health. I generally recommend against heavy weight training, very high intensity conditioning regimens, and contact sports for FMD patients --- but this needs to be customized for each patient depending on her/his history (such as whether there is a history of dissection or aneurysm) and also the blood vessels that are involved.

Pam Mace, RN: Hi Salty, I agree with Dr Gornik about having your other arteries screened for FMD. The two most common arteries affected are the renal and carotid arteries and the data from the patient registry has shown that more than half the patients with FMD will have FMD in more than one artery. Patients that have contacted me and say they now have FMD in another artery were not previously scanned/imaged in that artery to look for FMD.

Abbielevy: I have Carotid and Vertebral Artery FMD and last Spring FMD was found in my Popliteal Arteries in both legs. I realize FMD can be in any artery but this is one that my doctor who is part of the Registry had never seen. Also it does not have the string of beads appearance like my Carotid and Vertebral Artery FMD has, but looks more like "Ridging". Is this something that you have seen before in your practice?

Heather_Gornik,_MD: Dear Abbie --- FMD can involve the leg arteries, but it is almost always confined to the pelvic location, the external iliac arteries. I see a lot of FMD in my practice, but have never seen popliteal artery involvement. I would want to make sure this is really FMD, not atherosclerosis, standing wave artifact on an angiogram, or popliteal entrapment. Popliteal FMD again is something I have not seen and I do follow hundreds of patients.

Pam Mace RN: I am also not aware of patients with popliteal FMD.

FMDSHANE: Dr.Gornick, What causes the blood pressure "spikes" experienced by FMD patients? Most of us have sudden elevations of blood pressure, skin flushing, severe headaches, vertigo, anxiety,etc. My BP would go from 118/70 to 220/90 in a period of five minutes with no warning and no known stress related activity. Physicians including my cardiologist and nephrologist state "well BPs vary during the day" but this does not answer the question. After three renal angioplasties, a renal stent with a regime of eight antihypertensive medications, I was finally placed on Edarbyclor 40mgm/12.5 which along with Metoprolol XL 100 Mg Bid; Amlopidine 10 Mg Daily; and Clonodine 0.2 Mg patches weekly together. I finally have a normal blood pressure but not before I developed nephrosclerosis (bilaterally). I had been told that BP spikes would "cause no problem" but obviously that was not true. Thank you sincerely for your contributions to patients with FMD! Barbara Las Vegas, NV

Heather_Gornik,_MD: Dear Barbara, thanks from joining the chat from sunny NV! I am sorry to hear about your BP issues. It really sounds horrible taking so many medications. Drug resistant HTN and the "spikes" are definitely something I see in our FMD patients, even in some cases where we are sure there is not residual hemodynamically significant stenosis across the renal artery. I am sorry, but in 2013/2014 I don't have a mechanism for this in FMD. As for treatment, you may have read about the renal denervation trials --- unfortunately, these studies currently exclude patients with FMD, even if the narrowings are not significant. Perhaps at a future time, this might be available to some FMD patients who have had normal blood flow restored to the kidney but still have high BP or spikes. Stay tuned...

jenw2006: I was diagnosed with FMD in 2007, present in carotid, vertebral, renal & celiac. I generally feel good, seem to be in fairly good health, have not had any procedures/stents. Headaches, Horner's in left eye [result of TIA/dissected left carotid, since reopened] and bruits being my only visible/daily life issues. It's been a few years since I had ultra sound of my neck. I see an internist but she said only needs to see me if I'm having any difficulties. Should I be more proactive with medical approach? I don't want to have tests/images unless needed. Curious to know if you recommend a course of action from time of diagnosis for your FMD patients?

Heather_Gornik,_MD: We do generally put our FMD patients in an imaging surveillance protocol, and most of our patients have their involved vascular beds/arteries imaged every year or so.


FMD and Migraines

TTfmd1218: In patients diagnosed with FMD, have you found any link with migraines? In other words, if a patient was previously experiencing migraines, have they gotten more frequent since FMD diagnosis or if not previously experiencing migraines, has the patient began experiencing migraines since FMD diagnosis? What kind of meds do you suggest for patients experiencing migraines?

Heather_Gornik,_MD: FMD is definitely associated with headaches, including migraine type headaches as well as non-migraine headaches. There was a nice presentation on headaches by Dr. Rena Verma on behalf of the United States Registry for FMD given at the American Heart Association meeting last month. Here is a link to the abstract: www.abstractsonline.com/Plan/ViewAbstract.aspx?sKey=51506782-2977-4d56-8b88-0d6fd2f09e27&cKey=c911f469-b263-496c-bfa9-d65c554286a2&mKey={951E351E-429C-4B2E-84D0-8DA73B00DE45}. In terms of medications for headache, I would suggest you work closely with a headache specialist. We generally recommend against vasoconstrictive medications such as ergotamines and even against the tryptan medications for patients with carotid FMD.

Abbielevy: One of the symptoms of Carotid Artery FMD that seems to affect so many are migraine headaches. Since migraine headaches seem to be a problem for many women in general how would someone be able to determine if their headaches are FMD related or one of the many other reasons for migraines? Also what is it about FMD that would cause a migraine or migraine like headache?

Heather_Gornik,_MD:See prior answer - we also had a great abstract on this.

Pam Mace RN: If you go to the homepage of our website there is a great abstract with info on headaches and FMD that was just presented at the AHA meeting in Dallas. - www.fmdsa.org

Sweedish61: If I get stressed out I get a headache and can't think.....Is this normal? What can I expect? Is there a cure? My sister just passed away, she had Tia and strokes run in the family. Is this a cause of concern for my three daughters?

Heather_Gornik_MD: Some patients with headaches, especially migraine type headaches report feeling somewhat “slow” cognitively during a severe headaches, so this is not uncommon. There is no cure for FMD, but in general patient’s symptoms and vascular complications can be well managed with an expert care team. Finally, as for family history, I am sorry to hear about your sister’s passing. There are many different causes of TIA and stroke, and FMD would be less common than other potential causes, but a significant percentage of FMD patients have a family member who has suffered a stroke (~ 50% in the US FMD Registry). However, most patients with FMD do NOT have a family member who has clinical FMD. Researchers are just starting to delve into the genetics of FMD, so hopefully there will be more information in the years to come.

Canadianmom: Hello Dr. Gornik and Pam, I have Carotid FMD. What types of medication are used to help deal with migraines? I know that we cannot use vasoconstrictors etc. Thanks so much.

Heather_Gornik_MD: We try to avoid vasoconstrictors for our FMD patients with carotid/vertebral FMD, but like all things this needs to be individualized recommendations weighing risks vs. benefits. There are many of other classes of medications used for our migraine patients, mainly as preventive therapies. Here is some information on migraine from our Cleveland Clinic website, it does not specifically address FMD, but it is helpful:


FMD and Vascular Disease

Freespirit: What is the difference between FMD and vascular disease?

Heather_Gornik_MD: Fibromuscular dysplasia (FMD) is a specific type of vascular disease the effects the arteries only, especially the renal arteries and the arteries to the brain (carotid and vertebral). It is one type of vascular disease. The most common type of vascular disease that affects the arteries is atherosclerosis or plaque deposition in the artery wall.


FMD and Symptoms

Freespirit: Can carotid FMD cause pain in the sides of the neck? Thanks.

Heather_Gornik,_MD: Dear Freespirit --- absolutely. Neck pain, also known as “carotidynia” in the medical community, is a relatively common symptom of carotid FMD.

JudyfromNJ: I had never heard of FMD, but my 41 year old daughter has been ill for two years and no one has been able to diagnose her. Her symptoms started after she had a cardiac ablation for episodes of SVT's. She has had diffuse pain in her arms, legs, neck, head, along with dizziness, dyspnea, chest discomfort. Also overwhelming fatigue. She has had numerous tests including MRI of the brain (normal), right-sided heart cath to check for pulmonary htn (neg), pulmonary studies, stress tests, MRI of the heart (neg). She has had a muscle biopsy to rule out Mitochondrial disorders (also neg). She has drastically changed her lifestyle because of the fatigue and dyspnea. My mother had her first stroke at 57 yrs. old and I am wondering if perhaps she had FMD and if my daughter should be checked for this? She does not have high BP (actually it is low). If she were to be checked for this, who should she see and what test should be done?

Heather_Gornik,_MD: I am sorry to hear about your daughter's health issues. FMD could be a cause, but there would be other entities which would be much more likely. I do think she needs to be evaluated by a thoughtful cardiovascular specialist and neurologist.

Freespirit: Would carotid FMD cause scalp tenderness? Thank you.

Heather_Gornik,_MD: It's not a classic or common symptom, but not impossible as a headache variant. Would definitely review with your doctor.

Bruin: Good morning. I was taken to the hospital on Memorial Day because the entire right side of my body was paralyzed. MRA, CT-scans, and CTA showed no occlusions. Only abnormality was "irregularity of the left ICA at the level of C1 and C2...artifact or FMD" found on CTA. Follow up MRIs and MRAs came back normal. Final MRA Neck w/ contrast states "subtle irregularity of the distal cervical portion of the left ICA from CTA is not clearly visible on this exam. Therefore possibility of FMD not excluded." It took about one month for me to regain total use of the right side of my body. I have not had any other symptoms. (I also have Myasthenia Gravis. Neuro ruled out MG and meds as cause of T.I.A.). Please advise. Which test will definitely rule out FMD? Should I see a different kind of specialist? My neuro is expert at MG but not FMD. Thank you for taking the time to answer my questions.

Heather_Gornik,_MD: I am so sorry to hear about your health issues. The definitive test to diagnose cerebral FMD would be a catheter based cerebral angiogram. I would recommend you be evaluated by a cerebrovascular neurologist or stroke specialist to decide if this is indicated in your case.

dstrat: Can having an angioseal after an angiogram cause stenosis in the leg? I had no symptoms before the procedure when exercising and now my leg muscles tire, ache and toes go numb when walking on the treadmill, in that leg only.

Heather_Gornik,_MD: It is not common, but yes, vascular access closure devices can cause arterial narrowing. Other injuries to the arteries could have also occurred including dissection or thrombus/clotting. I would suggest you be evaluated by a vascular specialist.

mslararey: I have numbness in the left side of my face and neck, it seems sensitive to cold as well. I saw a neurologist and she ordered a series of tests. There doesn't seem to be anything wrong with my nerves or brain. However one of my blood vessels in my neck has traces of FMD. Do you think the numbness is a direct symptom of that? Is it a common symptom?

Heather_Gornik,_MD: Permanent numbness is an uncommon symptom of FMD unless there has been a stroke. I would really need to see and examine you and review your imaging to be able to rule in or out a connection between the two.

GeorgiaNana: Can FMD wax and wane? I've been told this, and don't understand completely.

Heather_Gornik,_MD: No FMD does not wax and wane, though symptoms due to FMD can!

Amandaf: My FMD is located in my vertebral arteries. Monthly I seem to get "kinks" in my neck or shoulder that leave me in pain for weeks at a time. What are your thoughts on chiropractor, massage or anything else that can help with these. I have been taking too many ibuprofens since diagnosed and now I think I am getting ulcers. So I am hoping for an alternative, Dr.'s where I live don't know enough, so pretty much just tell me to stay away from everything and don't do anything.

Heather_Gornik_MD: Dear amandaf, I think the first thing is to be sure that the neck and shoulder pain is really due to FMD --- do you have cervical spine disease, for example, or another musculoskeletal problem that is causing the neck pain that has nothing to do with your FMD. There have been some cases of cervical artery dissection associated with chiropractic neck adjustments, and I have cared for a few patients in whom this has occurred. Because of this, I generally recommend against this treatment, but there are other therapies that can be done for neck symptoms without the adjustment procedures. If you do see a chiropractor, I think it is critical that he/she know you have a vascular condition of the neck arteries. In general, European type or relaxation type massage is fine for cervical FMD patients. Warm compresses or other heat-based therapies are also fine. Please do get checked for other causes of neck/shoulder pain and to be sure that FMD is really the cause of you symptoms.

Scottie: This question relates to neck pain and headaches. It seems that many FMD patients experience neck pain which is fluctuating and is not linked with particular activities,triggers etc. How is this explained in terms of the FMD process? Also, similarly with headaches. Is there a vascular spasm mechanism which causes both symptoms, and if so, are FMD patients more prone to experiencing symptoms due to already narrowed portions in arteries?

Heather_Gornik_MD: Hi Scottie. You are absolutely right that neck pain and headaches are common symptoms among patients with FMD. In some patients neck pain and headaches may be due to a dissection or tear in a carotid or vertebral artery, but in many patients the headaches/neck pains occur just with FMD “beading”. Some patients with FMD can have headaches even with only renal artery involvement. There is a lot to learn about the mechanism (cause) of these symptoms in FMD. It is also important to be sure there is not another cause for neck pain --- for example, some patients with FMD can also have other health issues like severe arthritis of the cervical spine.

Mimi: I was diagnosed w/FMD in 2008 at age 64. I know I had FMD previously but they had not discovered it. I had one angioplasty which brought my BP down from 200/180. But I am on 5 BP pills. My BP is good--usually around 120/78. My vascular surgeon agrees that I am on a large amount of BP meds, but as for doing an angioplasty, he says, "I hate to poke a skunk." What do you think?

Heather_Gornik_MD: Dear Mimi, I generally agree that if blood pressure can be well controlled with medical therapy, especially for a patient with long standing high blood pressure and also prior angioplasty, it is reasonable to continue medical therapy. The patient’s most likely to have a “cure” of high blood pressure with renal FMD in general are those in whom high blood pressure has been present for only a short period of time, younger patients, patients without other health issues that are associated with high blood pressure (like diabetes, metabolic syndrome, obesity, strong family history of essential HTN), and patients where there is a significant pressure gradient across the beads or narrowings in the kidney artery. I also agree with your doctor that there is potential hazard for angioplasty, especially if you are not a candidate who is likely to have a cure of high blood pressure and if your blood pressure is well controlled.


FMD and Women

Minzmom: What are safe treatments to lessen menopause symptoms (hot flashes, night sweats) for FMD patients?

Heather_Gornik,_MD: This needs to be customized depending on your history (i.e., have you had a prior stroke or clotting issue, do you have cardiac disease), your vascular involvement (especially if there carotid involvement) and also the severity and location of your symptoms. There is very little data on hormone replacement therapy and FMD. For some FMD patients, hormone replacement therapy is high risk, particularly those with prior TIA or stroke. For other patients with very severe symptoms, HRT should be considered after a thoughtful evaluation by an expert familiar with FMD as well as the expert treating the menopausal symptoms. The evaluation should include consideration of risks, severity of symptoms, and also alternative therapies (some anti-depressant type medications, alternative or holistic medicine therapies, and local therapies such as for vaginal dryness, etc.). I don’t think we can make a blanket statement here.

Minzmom: Is Estrovan safe to take for menopausal symptoms, as it is all natural, not hormone based?

Heather_Gornik,_MD: I fear I am not familiar with this specific preparation. In general, the risks of hormone replacement need to be evaluated for each specific FMD patient and balanced against the severity of post-menopausal symptoms. Would definitely review this preparation with your doctor/GYN.

I am 38 y/o F, have renal FMD and had bilateral vertebral dissections 3 years ago after a ski accident, but am now pretty well - coming to see you in March. For patients who might otherwise benefit from oral hormonal meds (for heavy periods, dysfunctional uterine bleeding, etc) what are your thoughts? Is this absolutely contraindicated?

Also -- I used to take triptans for migraines and they worked extremely well for me, but I have now been told since my vertebral dissections that they are not an option, which is very difficult as I have had a hard time dealing with the migraines with standard OTC meds. Are there other migraine abortants you recommend to FMD patients?

Thanks and looking forward to meeting you - I realize the answer to these questions might be very patient specific, but wanted to ask in case you are able to make some general statements.

Heather_Gornik_MD: The risks vs. benefits of hormone replacement therapy or oral contraceptives for FMD patients really need to be weighed out on an individual basis balancing severity of FMD and other risks of hormone therapy (e.g., prior history of blood clots or other thrombotic issues McFarlee:) versus severity of symptoms and potential benefits. As for migraine medications, we generally try to avoid tryptans or other vasoconstrictors for FMD patients, especially those with prior dissection, but again, this has to be considered on a case by case basis. For many of our migraine patients, we focus with headache specialists on maximizing use of preventive medications. I look forward to meeting with you in a few months to discuss these issues in more detail.


FMD and MALS (Median Arcuate Ligament Syndrome)

FINEMIGHTY&DYNAMIC: Thank you Dr. Gornik and Pam Mace for your continued support of those of us affected by FMD! I and at least six others I know of have been diagnosed with Median Arcuate Ligament Syndrome and experiencing uncomfortable symptoms from this. Are you seeing FMD patients presenting with MALS in your clinic? Has the registry shown data suggesting FMD patients are presenting with MALS? Again, thank you for your ongoing pursuit of answers Dr. Gornik and Pam!

Heather_Gornik,_MD: Median arcuate ligament compression of the celiac artery is common in women. We once looked at presence of MALS in FMD patients versus women without FMD and didn't see a different (in the vascular lab here) but we never published this. I am sorry about that! For some patients median arcuate ligament syndrome can cause a lot of abdominal pain. We have an energetic team here at Cleveland Clinic doing some work on laparoscopic ligament release.


FMD and Stroke

Minzmom: In the event of a second ischemic stroke, is it safe for a clot busting drug (TPA) to be administered for a FMD patient who is on a daily 325mg aspirin - or are the risks too high?

Heather_Gornik,_MD: I have cared for FMD patients who have received TPA for ischemic stroke, generally before it was recognized that the cause of the stroke was FMD. For FMD patients, the likely cause of a stroke is a carotid or vertebral artery dissection, which is a different mechanism than most typical ischemic strokes, which are more likely to be due to embolic events.

Minzmom: What do you suggest that an FMD patient who has already had one ischemic stroke should put on a medical alert bracelet - and do you recommend that it should be worn at all times?

Heather_Gornik,_MD: I often recommend a Medical Alert bracelet for my FMD patients, especially those that have had major vascular events such as a stroke or dissection or who have aneurysms. I think this is a very good idea.

Pam Mace, RN: In your case, I would add H/O (which means history of ) stroke, FMD.; and then add ICE (in case of emergency) and add a close family members phone number, that family member should know your full medical history and who your doctors are so that they can provide information in the event something where to happen and you were not able to give the information. As far as wearing your bracelet daily that depends on your medical history, symptoms and how active you are. If you were traveling alone I would wear it but if you were out with family or friends you might be comfortable without it. You should also add ICE as a contact in your phone and the number of a family member who again knows your medical history, medical professionals are trained to look for that. Look at the site called Laurens Hope they have medical alert bracelets, they are fun with lots of choices for a bracelet or watch that can be worn with your medical alert tag.

Sweedish61: Since I had my stroke (my 2nd in two years) I am having trouble with math which was always my strong suit. Also prior to the 2nd stroke I had a car accident. Could the car accident aggravated the condition Fmd which I hadn't been diagnosed yet?

Heather_Gornik_MD: Certain types of stroke can cause different neurological syndromes including problems with various aspects of cognitive function. As for the automobile accident, we generally do not think of FMD as a traumatic process, so I think unlikely, unless an arterial dissection (or tear of an artery) occurred, which can be due to trauma.


Reversible Vasospasm

scottie: Thank you for holding this online chat and for all your work with FMD. My question relates to reversible vascular spasm. Is this recognized in FMD and could this explain differing MRA results over time? I had severe left sided subclavian stenosis showing a year ago and this year there is no evidence of it on my recent MRA. Can reversible spasm cause our symptoms to come and go?

Heather_Gornik,_MD: Thank you for joining the chat! As for reversible vasospasm, there is an entity called reversible cerebral vasoconstriction syndrome (RCVS) which can present with severe headaches and even stroke and is more common in women. This is not directly related to FMD but is on the differential diagnosis. As for your subclavian "narrowing" --- I would be very suspicious that this was an imaging artifact. MRA is notorious for this, and the subclavian would be an unlikely location for vasospasm. FMD is NOT considered a vasospastic disorder in general.


FMD and Medications

hunter16: I have Bilateral FMD of ICA and Vertebral arteries, also plaque noted in ICA, I was started on Simvastatin due to 80% blockage of my LAD and had a stent placed. What will the statin do for my ICA? I believe the blockage in the ICA is 35%

Heather_Gornik,_MD: You raise an important point. FMD and plaque blockages are different vascular diseases but can happen simultaneously in the same arteries. The percentage stenosis number applies to plaque blockage or atherosclerosis, but not FMD. I do generally recommend statins for patients with carotid atherosclerosis to prevent progression of the blockage and evidence suggests this may also prevent stroke or mini stroke.

Minzmom: With the new statin guidelines, do you recommend that FMD patients who have had a stroke start taking a statin?

Heather_Gornik,_MD: It’s a very timely question! I generally do recommend statins for FMD patients with prior ischemic/embolic stroke as well as for those FMD patients who also have concomitant atherosclerotic disease (such as carotid plaque as well as for FMD). For patients who have had hemorrhagic stroke or have no plaque but have had a carotid dissection, there is not strong evidence to support statin therapy, unless there is some other strong reason for it (such as diabetes, heart disease, etc.).

Sophiemonique: I found I had carotid fibromuscular dysplasia ten years ago, when I had a TIA and dissections on both sides. I was put on coumadin because the dissections were not operable, and two years later went into Mayo Clinic, where they then took me off coumadin. I remained asymptomatic. This is ten years later and I just had another carotid dissection, and was put on coumadin and plavix, again, not operable because of the type of dissection. My doctor told me I would probably have to remain on coumadin the rest of my life. ( I am 57, female). My question is- Are most patients who have carotid fibromuscular dysplasia on Coumadin? I had gone to Mayo Clinic after the first time, and they took me off coumadin. Thank you!

Heather_Gornik,_MD: For carotid artery dissection, many but not all patients are treated with coumadin initially, generally for three months or so. It is unusual to have recurrent dissections so many years apart, but this can happen in FMD.

fmdk: Dr. Gornik: Losartan seems to be a somewhat controversial drug. What is your opinion re: the idea of some researchers that there might be a cancer connection? It would be reassuring to hear your thinking since you treat so many FMD patients.

Heather_Gornik,_MD: I know there is evolving data on this, but I do think in my patient population the benefits outweigh the risks and I prescribe losartan and related angiotensin receptor blockers routinely in patients with renal FMD (or also use Ace inhibitors) and also patients with aneurysm disease.


FMD: Exercise, Massage and Chiropractic Adjustments

kturn08: I am 32 years old and was diagnosed with FMD this year. In May, I had a synthetic bypass on my right iliac artery, six weeks ago angioplasty on my left. I am distance runner, practice bikram yoga and overall exercise nut. My surgeon thought I would have immediate relief and be able to run and participate in my workouts post-surgery, but I am still experiencing symptoms regardless of the activity and running intensifies it the most. I get pins/needles in my leg; it cramps and worsens when it's cold. My legs feel dead & fatigue quickly. It happens in both legs. I am completely frustrated & feeling defeated. Have you come across other cases with FMD in the legs with athletes and are they able to resume activity? Are there other tests to see what's happening when my legs are at work vs. at rest? Other surgeries, therapies, etc. that can help with symptoms or are these things I will always live with? Any supplements to help, diet, etc. Thank you for your time. Frustrated in CT

Heather_Gornik,_MD: Thanks for joining chat. This sounds like major quality of life impairment and I am sorry about that. Isolated iliac FMD is somewhat unusual. There is also an entity called external iliac endofibrosis which presents in female athletes, and I wonder if this could be related --- it is an FMD like condition. I think you can always seek a second opinion as your leg symptoms sound very severe. First step would be to determine if they are due to the vascular problem versus another entity (muscular, neurological, compartment syndromes, etc.). We would be happy to see you here. Good luck.

mindawg: I had a left carotid dissection on August 12th, 13. I don't recall any symptoms prior-never had a migraine, blood pressure problem ect. I've always been very active--triathlons, hiking, lifting, gym classes; including yoga and bootcamp. My question is once my dissection is healed what am I able to return to without being scared of this reoccurring? 4 days prior to dissection/stroke I had went to a Chiropractor and had a neck manipulation. Do I go back to my normal life, but just be careful of my neck? I want to be aware of the do's and don'ts, without living my life in fear. Also, should someone with this being taking a blood thinner for the rest of their lives? I've been told both "no“ and "yes."

Heather_Gornik,_MD: Dear Mindawg. I can give some general guidelines that we give to our carotid FMD and especially our cervical artery dissection, but each patient’s situation is unique. I generally recommend against heavy weight lifting, contact sports, and intense competitive exercise programs for patients who have had prior carotid/vertebral dissection. For most patients, moderate aerobic exercise, such as walking, elliptical, swimming, yoga, hiking, are OK. Whether or not you can compete competitively or continue triathlons would really need to be evaluated based upon your specific history and imaging findings. I generally recommend against chiropractic adjustments for patients with carotid FMD and/or a history of cervical artery dissection. In terms of blood thinners and dissection, many patients are treated with blood thinners such as warfarin/coumadin initially. Most patients are ultimately transitioned to antiplatelet medications like aspirin or clopidogrel, but again this really needs to be customized.

s1u1e: I have intracranial carotid FMD, is it a problem to continue exercising as normal (weights/treadmill/inversion table). I also see a chiropractor (he is not a pop and jerk type) but just wondered if there was any danger in these treatments. (He is aware of my FMD.)

Heather_Gornik,_MD: Again it really depends on the specifics of your case. When you say intracranial FMD is this beading or aneurysms, etc. In general aerobic exercise, treadmill is fine. Light weights too, but we do generally recommend against heavy weight training for FMD patients. I generally do recommend avoiding chiropractic manipulation of the neck for patients with cerebrovascular FMD.


FMD and Diet

swedish61: I know diet will improve anything. What is the best diet for FMD?

Heather_Gornik,_MD: I generally recommend a heart healthy diet, low in animal fat and rich in fruits and vegetables, but no, I'm afraid there is no data on FMD and diet... I'd like to say that chocolate can cure FMD, but afraid that is not the case (holiday joke).


FMD and Inflammation

Freespirit: What new information has been learned about FMD in the past year or so? Many illnesses seem to be caused by inflammation; could inflammation be the cause of FMD? Thanks.

Heather_Gornik,_MD: There is general consensus that FMD is not an inflammatory disorder, so there is no role for anti-inflammatory treatment or immunosuppressive agents in FMD care. From my perspective, the main new development relates to the need to assess all of the vessels in an FMD patient, not just the carotid and renals or the areas that correlate to symptoms. We do this to look for aneurysms or tears in arteries (dissection). One other interesting development that was just published last month in the Journal of the American College of Cardiology from the US FMD Registry by lead author (and my partner here at Cleveland Clinic), Dr. Esther Kim was that men with FMD tend to present with a different constellation of symptoms than women. One of the more common presentations of FMD in men is renal artery dissection and renal artery infarction. Men with FMD are also somewhat more likely to have any aneurysm or dissection than women with FMD.

Pam Mace, RN: Our website does have data released from the patient registry posted on there as well as power point presentations from several physicians. Dr Gornik has a great presentation posted on the home page of our website www.fmdsa.org. We are in the process of updating our website and we hope that it will be live this week. We have a page dedicated to research and the patient registry so all information/data from the registry that has been presented can be found there.


Marijuana and FMD

dstrat: Hi Dr. Gornick, I would like to know how you feel about FMD patients smoking marijuana. It is an incredible pain reliever for arthritis conditions in my hands and hips and also a great stress reliever in life in general and alleviates having to take pain medications. Appreciate your time and energy teaching us what you know about this disease.

Heather_Gornik,_MD: There is no data on marijuana and FMD. Marijuana is not legal in most states. In addition, there is an entity known as cannabis arteritis where marijuana can affect the arteries, so in general I do not recommend.


FMDSA and FMD Registry

FINEMIGHTY&DYNAMIC: Happy Holidays! I get so excited to see the information coming out of the FMD registry. And as the number of the registry participants continues to grow it only furthers our progress in learning more about this disease! Can you tell us how these findings will help in the future for those of us affected by FMD? Will these findings help to set protocols? Thank you Dr. Gornik and Pam Mace! The Dynamic Duo!

Heather_Gornik,_MD: Thank you for your kind words. My participation in the FMD Registry (sponsored by FMDSA) has really been a highlight of my medical career. I had a chance to recap the registry findings at the American Heart meeting last month --- I believe slides are on line at www.fmdsa.org. I can't emphasize enough how important I think the Registry has been not only for research (ten abstracts published to date), but also in raising awareness and engaging the medical community in this disease. I think the Registry investigators are learning and growing in their FMD knowledge as we contribute to the scientific knowledge about this disease. We should have 1000 patients in the Registry any time now. I'd like to acknowledge not only FMDSA but also the Registry chairman, Dr. Jeffrey Olin my friend and colleague in New York and also the University of Michigan MCORRP team.

Pam Mace RN: In addition to what Dr. Gornik said, I would like to thank all the donors that made the Registry possible. Without your support there would be no Registry. Currently we have 14 centers participating in the US and we are in the process of working with other centers who are interested in becoming participating centers. Stay tuned and information will be posted on www.fmdsa.org!

pom: In the Netherlands it isn't usual that when someone is diagnosed with FMD in renal artery, they will also start looking in the carotid artery. Why is that a difference between America and Holland? And also when I told them that there is a 65% change to have it also in the carotid, they are not responding.

Heather_Gornik,_MD: It sounds like we need to get the word out on the US FMD Registry findings to the Dutch medical community. There will also be a scientific statement soon from the American Heart Association on FMD, chaired by Dr. Olin, which I think will be helpful to share.

Pam Mace RN: Up until just a few years ago, the thought was that 75% of the FMD cases affected the renal arteries. We saw an increase in carotid diagnosis after the FMDSA awareness campaign started and we were attending medical conferences educating medical professionals. In the US we have seen a direct correlation between diagnosis and awareness. That is why attending conferences and the awareness campaign is so important. FMDSA has been working with researchers in the Netherlands, Europe, Canada, Australia and any country that will listen!

GeorgiaNana: Thank you for this online support group and for FMDSA. My doctor also avoids my questions and shrugs his shoulders when I ask questions. I am scheduled to see you in mid-January also, and am looking forward to it.

Heather_Gornik_MD: Thank you! Happy New Year and see you soon. We’ve really enjoyed doing these chats too, and I appreciate all of the terrific (and sometimes challenging) questions we had today.

Sophiemonique: I feel a lot of stress, wondering if my doctors truly do understand fmd, so finding this webchat has made me feel so much more at ease. I have been getting tested every year, but still managed to have a dissection, so after 10 years, of finally not having stress, its back... Thank you so much for your answers. Peggy

Heather_Gornik_MD: Thank you Peggy. I am sorry to hear about your having another dissection.

EliC: Thanksgiving Day is past, but I'm still so thankful for Drs. Gornik and Kim and Cleveland Clinic, Pam Mace and all FMDSA and all regulars on FMD Inspire who make me feel less alone. I knew no other FMDer for over 30 years. Don't wish FMD [or any chronic disease] on anyone, but so much better time now to be diagnosed. It will be even better for future diagnosis with Doris Duke Foundation donating for FMD study at U. of Michigan. Dr. Olin is a great supporter of the cause in NYC. All of the volunteers and professionals helping FMDers have my most profound wishes for a very healthy, happy, and productive 2014!

Pam Mace RN: Thank you! We are so proud of Dr. Santhi Ganesh getting that grant from Doris Duke for $450,000 for FMD research.

Mcfarlee: Just want to say a big THANK YOU to Dr. Gornik and everyone involved in researching this condition, I have been diagnosed for 14 years but only stumbled on this organization in last couple months, with my own docs always kind of just shrugging when I asked questions about my condition (and I say that with respect as I am a physician too!) -- You have given me and my family so much hope and relief - and a lot of what I have learned here has been quite reassuring. THANK YOU!!!

Heather_Gornik,_MD: Thank you!

Pam Mace RN: Thank you for your kind words - I am glad that our website and resources have been helpful to you. We have our patients in mind with all of our programs - just trying to provide resources and making things easier for you.

Reviewed: 01/14

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