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Fibromuscular Dysplasia (FMD) (Dr. Gornik and Pam Mace RN - FMDSA - 12/8/10)

December 8, 2010

Heather Gornik, MD
Staff Physician
Robert and Suzanne Tomsich Department of Cardiovascular Medicine: Clinical Cardiology and Vascular Medicine Medical Director, Non-Invasive Vascular Laboratory

Description

Fibromuscular dysplasia (FMD) is a rare disorder characterized by abnormal cellular growth in the walls of medium and large arteries. FMD is most common in women between ages 30 and 50, but may also occur in children and the elderly. Treatment for FMD varies and can be tailored to treat different severities. Dr. Heather Gornik and Special Guest, Pamela Mace, RN, President FMDSA, answer your questions about FMD.

More Information

Cleveland_Clinic_Host: Welcome to our "Fibromuscular Dysplasia" online health chat with Heather Gornik, MD and Pam Mace from FMDSA. They will be answering a variety of questions on the topic. We are very excited to have them here today! Thank you for joining us, let's begin with the questions.

Dr__Gornik: Thank you for having me today. These chats are always a lot of fun for me and a challenge too to keep up with the FMD patient community!

Pam_Mace_RN: I would like to thank the Cleveland Clinic for having me today.


FMD and Diagnostic Testing

jeniello: Would Diovan 320mg's affect the results of a CT Scan? Know that Diovan increases blood flow could the CT Scan still pick up a mild case of stenosis?

Dr__Gornik: Good question. But in general, high blood pressure, low blood pressure, or blood pressure medications should not have an impact on the percentage stenosis on a CT scan. We need to be careful though in interpreting CT scans because % stenosis is generally applied toward blockages due to plaque and not well validated for the beading due to FMD.

Onekidneygal: Hello Dr. Gornick and Pam: Could you explain if ones lab results regarding their BUN would be related to FMD affecting these results. Example I had a lab value of "9" in September and recent labs in November are now "17". Creatinine has remained about the same at .93 and .92 Additionally why is it that often times our kidney labs look great but we have severe stenosis of renal artery? Thank you.

Dr__Gornik: Dear onekidneygal --- the BUN is not a very reliable marker of renal function, it fluctuates widely depending on whether you are dehydrated, what medications you are taking, etc. Creatinine is a more reliable measure of renal function, though it is not perfect. In general, renal function is preserved unless narrowings become very, very severe. Patients can have renal artery narrowings due to FMD but kidney function is generally preserved.

Sedona: I, too, have recently had labs that indicate my parathyroid hormone level is a high normal. Also, my calcium has increased. My MD is going to repeat these in January. Should I be followed by an endocrinologist in stead of my internal medicine physician?

Dr__Gornik: Dear Sedona, I don’t think your parathyroid issue is FMD related. Yes, an endocrinologist would be the specialist with expertise in this disorder, although many internal medicine physicians are also very comfortable treating parathyroid problems.

Onekidneygal: Hello Dr. Gornick and Pam: Do you see a future where there will perhaps be a blood test that could identify those who might end up with FMD? Thank you!

Dr__Gornik: I am afraid it is too early to tell at this time, although our Center and others in the U.S. and abroad are starting to look at blood test markers of FMD.

Onekidneygal: Hello Dr. Gornick and Pam: Angiograms are a common testing procedure for FMD patients. I would like to know if you are seeing any complications in FMD patients who have had the angio seal? Some patients wonder if the collagen in the seal might not work well with FMD patients. What are your thoughts on this? After a recent angio seal (my first one) I have now been diagnosed with greater than 50% stenosis in femoral artery (not FMD). Thank you for your time!

Dr__Gornik: We generally do not use a closure device after procedures in our FMD patients, especially if there is FMD in the leg arteries, but there are some cases when a closure device is preferable.

Kaulrich: How important is to get pressure readings during an renal angiogram? Can stenosis be accurately determined by the an angiogram alone?

Dr__Gornik: I cannot speak for all institutions, but in my own experience with our interventional team here and in collaboration with our FMD experts; it can be difficult on the angiogram alone to tell how severe a blockage is (due to the “string of beads” of many blockages in a row). We have found that either looking inside of the renal artery with an ultrasound catheter (intravascular ultrasound, or IVUS) or measuring blood pressure gradients across the renal artery (significant narrowings have a significant drop in pressure across the artery) can more accurately determine if the “beading” we see in FMD is causing a severe stenosis. We generally do one or both of these in our renal FMD procedures.

Kaulrich: Chest pain and FMD of the coronary arteries has been a frequent topic and concern at our support group meetings. What would be the gold standard for checking coronary FMD? It seems the few with coronary FMD have had negative stress tests, normal EKG and normal cardiac enzymes.

Dr__Gornik: Coronary FMD is highly unusual, and I perhaps have seen it only once in my career. There is much more we need to learn about coronary FMD before I would recommend any tests to screen for it, especially because there may be potential for harm with unnecessary and invasive procedures. We will be capturing some information on coronary events in the FMD patient registry.

Bridget: Are normal dopplers sufficient to portray adequate blood supply to the brain two years after stents or should I insist on a CO2 one? I am tired all the time and just don't feel as if I am getting enough blood to my head!

Dr__Gornik: Bridget, I’m going to defer that answer to your neurologist. Ultrasound can detect blood flow to the brain very well, and transcranial Doppler can detect flow within the brain. Whether or not you need additional testing depends on your specific symptoms.

EliC: Do we need to keep B/P once or twice daily when FMD

Pam Mace: Dear EliC, I think you should discuss this with your doctor based on any blood pressure issues you may be having and if your having symptoms.

Llfoster: Hello Dr Gornik & Pam, Do you feel baseline cardiac testing should be done for FMD patients? Would this only be considered only if symptomatic? By the way it is cold in Florida too!

Pam Mace: As you know there are no real protocols for treating FMD and I know only a handful of patients that have coronary FMD. I do think that anyone who is symptomatic should have testing done and I think most doctors would make their decision based on the patient’s family and medical history.

Dr__Gornik: I agree. Coronary FMD is extremely rare and there are not clear pathways for its treatment. I think there would be more harm done in unnecessary stress testing, catheterization in asymptomatic patients than any good. A close clinical evaluation is very important.


Symptoms and Presentation of FMD

Kriste: I have had high blood pressure for at least 4 years that has not responded to medication. I was finally diagnosed with FMD in aug and had an angioplasty on my right renal artery. Shortly afterward, I had sonograms on my other arteries. I have had pain in the area of my right ear for at least 4 years as well and I felt sure that they would find FMD in my right carotid artery. They found that the artery is 50 to 69% blocked and I will probably have to have an angioplasty next year. (I also have FMD in my left renal artery and left artery with only minimal blockage at this time). My kidney doctor said that it is a coincidence that I have pain at the same spot that I have the FMD. Could the ear pain be related to the FMD? It comes and goes but I feel it stronger the more I exercise. Also, I asked my vascular doctor about getting an MRA or CTA on my brain and he didn't feel I should risk the exposure to the radiation. I am concerned because my grandmother died at 52 from a "hemorrhage due to high blood pressure”; presumably she had FMD. How concerned should I be?

Dr__Gornik: Hi Kriste. Ear pain is unusual for carotid FMD, but sometimes patients can have some pain over the carotid artery. In some cases a chronic carotid dissection could also be present and could cause some pain. We generally obtain at least a brain MRA on our FMD patients to look for intracranial aneurysm --- this is not associated with ionizing radiation. Your grandmother’s family history is concerning for possible ruptured brain aneurysm, so I would recommend this. Good luck.

Mary: I was diagnosed with FMD in 04/2008 with bilateral carotid dissection, left carotid occlusion and right internal carotid flow limiting stenosis and bilateral vertebral artery irregularity with stenosis. tests showed bi-hemispheric cerebral hypoperfusion. I got 3 stents in right carotid & moved to India. 6 month dopplers show blood is flowing in stents. I have no energy now after 4 o’clock memory issues want to address this, but the neurologist does not seem concerned. He prescribed some physical therapy to get energy back. Will that do it or is my brain self destructing? is there anything I can do to prevent that? what is cerebral hypoperfusion and what kind of neurologist should I track down somewhere in this country to answer my questions about it? What kind of medical test do I get to detect changes in my white matter (e.g. to see the changes since the ones in 2008) and would any changes be making me so tired all the time and what kind of physical therapy would help for it, if at all? I am active as much as possible. I walk an average of 8,000 steps a day, swim a mile 4-5 times a week and I have just started a aqua aerobics class.

Dr__Gornik: Dear Mary. Again, it’s tough to speak specifically to your symptoms and your case without evaluating you and reviewing your imaging. It is uncommon for patients with carotid FMD to have cerebral hypoperfusion. Cerebral hypoperfusion is severe narrowings in the vessels that leads to inadequate blood flow to the brain. Only if the narrowings are critical and involving multiple blood vessels to the brain can this been the case, and in my large FMD practice, I have only seen this once or twice. To diagnose cerebral hypoperfusion, we would look at your angiogram or other imaging studies of your carotid and vertebral arteries, we would have you be seen with one of the cerebrovascular neurologists on our FMD team, and we may consider some additional imaging studies, such as transcranial Doppler with holding of the breath or something called a Diamox rain SPECT scan. These tests can be used to assess the adequacy of blood flow. Most importantly, I think you need to be evaluated by a cerebrovascular or stroke neurologist who is very familiar with FMD. Good luck.

RoRo: One of the symptoms of FMD is the swooshing behind the ears. Mine actually sounds more like a deep humming. It comes & goes during the day, but I almost always hear it at nighttime and also after exercising or after a long stressful day. Is there anything that can help reduce it?

Dr__Gornik: Dear RoRo - I spend much of my Wednesdays at Cleveland Clinic hearing about swooshing, pulsing, throbbing and pounding in the ears. Indeed this is a common and what seems to be a very annoying symptom related to FMD. We have started a collaboration with our audiology program for some treatments for pulsatile tinnitus - the medical name for the swoosh. They have a number of treatments to help patients cope with the swooshing. We would be happy to see you here at any time.

Pam_Mace_RN: I commonly have patients complaining of the exact noise you describe - I personally have a swooshing noise. Sometimes just changing the position of my head will make it go away.

Kari: Many FMD patients are told they have "good blood flow" per u/s yet they are symptomatic, ie swooshing, dizziness etc. Just because there is good blood flow does not mean you will not be symptomatic, can you clarify this. It is confusing to many patients.

Dr__Gornik: Dear Kari, good question. One thing important to understand is that ultrasound and all of the non invasive imaging modalities have traditionally been use to determine severity of narrowing of blood vessels when the cause of the narrowing is atherosclerosis or plaque rather than FMD. In some cases, it is difficult to assess how severe the narrowings of FMD may be because of the areas of beading (webs or narrowings followed by wider areas). This probably accounts for some of this, and in some cases a regular angiogram is needed to tell how severe blockages may be. The other explanation for this is that in some cases a patient has FMD, but the symptoms are not due to FMD. Even in an FMD patient, there can be other medical problems “going on” at the same time.

Pam_Mace_RN: Personally I have the swishing noise in my right ear but the blood flow to my carotid arteries is good.

onekidneygal: Hello Dr. Gornick and Pam: Many of my friends and I have carotid FMD. While I understand the basics of FMD in the carotids, when the brain is added into the picture with results such as 3. MULTIPLE BILATERAL PERIVENTRICULAR AND SUBCORTICAL WHITE MATTER NONSPECIFIC HYPERINTENSE FOCI COMPATIBLE WITH SMALL VESSEL ISCHEMIC DISEASE. is this something that would be contributed to FMD? Or is it more likely to relate to long term hypertension? Additionally I have quite a few FMD friends and we all seem to note our memory and cognitive skills seem to be not nearly as good as our non=FMD friends. Would this be related to the carotid FMD and lack of blood flow to the noggin? Thank you again for all that you do! We love you!!

Dr__Gornik: The white matter lesions on the brain that you describe can be related to many things including older age, long standing high blood pressure and vascular issues. I think this is something that needs to be studied more rigorously. We do see this in older FMD patients in MRI scans but I also see this in older patients that do not have FMD.

Pam_Mace_RN: Maybe we should look at cognitive testing in our FMD patients. My experience has been the patients that generally ask this question are greater than 50 years old where you would be more likely to see these changes.

Dr__Gornik: Great idea regarding a study on neurocognitive testing! We are now looking at quality of life in our FMD patients. Perhaps down the road, we may explore cognitive function.

MallK: In 2001 I experienced an intracranial hemorrhage from a spontaneous dissection of the L. vertebral artery. I recovered remarkably well, but in 2009 began to have new symptoms including chronic right neck pain extending from my throat to right ear. Because they do not hear a neck bruit, my physicians don't consider FMD. Does FMD in the vertebral artery also cause a bruit?

Dr__Gornik: FMD in the vertebral artery does not always cause a bruit… even patients with carotid FMD may not have a bruit, so the only way to know for sure if you are having a vascular problem related to FMD (such as a dissection) would be an imaging study. For the vertebral arteries either MRA or CTA is recommended

misstexas: I have carotid FMD with 95 % blockage. Just discovered this summer at the age of 65. I had been lightheaded, headaches, and neck pain causing me to go to doc for inner ear infection. Found FMD with cerebral angiogram but in no other arteries. I'm asking why, at the age of 65 am I all of a sudden symptomatic. I worry it's getting worse. My doctors tell me because I have taken aspirin on a daily basis since I was at least 18 has saved me due to blood flow. They say just continue. Can nothing else be done for headaches and a tripping sensation all the time now?

Pam_Mace_RN: I would suggest due to your symptoms that you be evaluated by an FMD specialist to make sure that you are being managed appropriately.

Dr__Gornik: It is possible the FMD has been present for years and your symptoms may not even be related to FMD or if the symptoms developed suddenly I would want to be sure there was not a carotid dissection because this can present with headaches, neck pain and severe carotid narrowing. Without seeing you and your imaging studies it is impossible to say.

Sk12: Do bruits in carotid arteries significantly increase a patient's risk of dying prematurely of vascular causes per MA general Hospital Vascular Center News?

Dr__Gornik: There is some data that the presence of a carotid bruit increases the risk of cardiovascular events, such as heart attack, stroke, death, but these bruits are those that are due to clogged arteries from atherosclerotic plaque, rather than bruits due to FMD. So, I do not think these data apply directly to FMD patients. This is a very different problem than atherosclerosis.

Sk12: Do patients w/FMD in carotid arteries have pain in their neck? Is it in their head?

Dr__Gornik: I have had a few patients with carotid FMD who have chronic pain in the neck. When this happens, I always want to be sure the patient has not had a carotid dissection or tear of the blood vessels in the neck. Sometimes a patient may have had a dissection and may not even be aware of this.

Pam Mace: Dear sk12, I do get contacted by quite a few patients with carotid disease that complain of neck pain. We are not sure what the correlation is if any.

Libsfmd: Can having FMD of the abdomen cause chronic pain in that area?

Dr__Gornik: FMD can involve the arteries to the stomach and the intestines, though this is less common than renal or carotid FMD. Abdominal pain after eating and weight loss could be signs of abdominal vascular disease.

Sk12: Another one please. Can an FMD patient feel a bulging aneurysm in the carotid artery or could it be the beaded area? Thanks again

Dr__Gornik: Dear Sk12, I’m not sure what you are feeling… I’ve had some FMD patients with some neck discomforts. I would review this bulge with your doctor. Sometimes a vascular ultrasound can be done that focuses right on the area that is bothering you to be sure it is not caused by a blood vessel problem.

Mimi: About 2 months ago, I had chronic headaches. They were dull headaches that would start where my head met my neck and would get progressively worse till they spread to my whole head. My internist prescribed verapamil and my nephrologist upped my Lisinopril from 20mg to 40mg. The headaches got better. I still can feel them coming on at times but they never get really bad. I now am on 5 BP meds. My BP was fine when I had the headaches. Could these headaches been related to FMD?

Dr__Gornik: Definitely, we have seen headache as a very common, and unfortunately very quality of life-impairing, symptom of FMD. You should be evaluated for carotid FMD, presence of intracranial aneurysms, and other causes of headache. In some cases, evaluation by headache neurologist or other headache specialist may be helpful.

NurseAlicia17: I have been an extremely thin female my whole life, until a year ago. I've gained 20 lbs in 6 months, is this weight gain common in FMD pts? 72inch small frame, was 135 lbs, now 155 lbs.

Pam Mace: Hi Nurse Alicia, weight gain is not a symptom of FMD. Could it be due to any medications?

Dr__Gornik: I agree with Pam, as well.

Tracyvdb: I have FMD of the renal arteries and underwent my 2nd balloon angioplasty in Oct. Since then my BP has slowly crept back up. However, it's mostly normal at home and much higher at work (up to the 140s/90s). I believe it is related to stress. If this is the case is it still a concern? Also, for someone like me who is currently off all BP medications, what is my target BP and what is too high?

Dr__Gornik: Dear Tracy. In many cases, even the most successful angioplasty procedure for FMD will not completely eliminate high blood pressure or the need for at least one blood pressure medication. A target of 140/90 applies for most, with an optimal blood pressure of 130/80

Tkvan77: I have "loops" in my carotid arteries. This is now considered FMD as well?

Dr__Gornik: Yes, we do think “loops” are a part of the FMD process, though we are just starting to learn about this in more detail. Looping may also be referred to as “tortuosity

LRussell: Regarding cognitive & memory issues, we have also seen doctors seemingly unconcerned with this side effect, but it is difficult to live with. Any advice on getting someone to listen?

Dr__Gornik: I would recommend seeing a neurologist who is familiar with both FMD and cognitive issues. As I mentioned before, I would be very concerned your symptoms are due to something other than FMD and would want to rule out other abnormalities.

Ginsum2010: I was diagnosed with bi-lat dissections in the internal carotids high up (behind the ears and up towards the brain) - my left side is far worse then my right. I still have lots of pain up the back side of my head/behind my ear and have been on and off pain pills for the whole year. My tests show me being "stable" but still the pain and discomfort persists (along with the thumping noise). I don't like being on all this medicine - I take small doses of vicoden 1/2 tablet once a day or once every few days depending on pain. Could using this medication for a long period keep me from healing or make other things worse?

Pam Mace: I have not heard of pain medication keeping arteries from healing or making things worse. In general I do worry about anyone taking narcotics for a long period of time. I can tell you from personal experience and patients that I have spoken with that it takes time for the dissected artery to heal and as it does- symptoms become less and less of an issue.

Ginsum2010: I too have lots of left ear pain with my dissection like kriste - and when I had the tia that was a major symptom I first thought I had an ear infection - and later in the week when I went numb we discovered the dissection on the left. I believe the pain is because of the dissection.

Pam Mace: Thanks for the input here, even though I have never heard this from patients I will watch for others that may have the same complaint. This is how we learn

Dr__Gornik: Dear ginsum2010, yes, definitely carotid dissection can present with neck pain or even ear pain. I have heard this from some of my patients with carotid dissection.

Ginsum2010: A few times in my life they put me on birth control to help with endometriosis and heavy flow issues - on those times my migraines spiked monthly and my BP was way up - I feel there is a huge correlation with these symptoms and when I had TIA's I'm eager to hear as they do more research. Thanks for all your help ladies this is hugely informative and helpful to not feel so alone in this!

Dr__Gornik: Dear ginsum2010; a lot of patients report to me that there symptoms seem to worsen around the time of the menstrual period (headaches, BP, “swooshing”). This definitely is an area that needs to be investigated further.

Kaulrich: Using white noise helps.

Dr__Gornik: Thanks. I am assuming you are talking about the “swooshing” in the ears (a/k/a pulsatile tinnitus), and I have heard this from patients too.


FMD Treatment

kradik19: Hi Dr. Gornik, Thanks for all the information you gave my husband and I last week. One question I forgot to ask is in regards to pain medications for headaches. Is it unsafe to take medications like Imitrex, Maxalt because of my history of carotid dissection? Thanks.

Dr__Gornik: Dear kradik19 - great question. In general, I do have my patients with carotid FMD and especially carotid dissection avoid vasoconstrictive medications such as the tryptans that you have listed here. In some cases, though, these are absolutely necessary - I might suggest you be seen in a multidisciplinary headache clinic to see if there are non- tryptan options for your headaches.

Rochelle: Firstly, thank you for these informative web chats on FMD. This is the first time I submit a question, but I have certainly appreciated learning from the topics discussed during past web chats. Question: My renal artery dissected after I received a 'routine' stent during man angioplasty, so now I have two stents, one being partially crushed - because of this, I'm told I'll most likely need to be on Coumadin for life. I believe many in the medical community, as well as some FMD patients, feel that stenting should be the first line of treatment for FMD (much the same as if they were treating atherosclerosis). Some patients seem concerned that they were not stented during angioplasty for FMD. Can you perhaps discuss how stenting is generally not necessary or recommended for FMD, and why there can be complications from having them? I also understand there are new studies that are raising concerns with stents/clotting, and how they may affect women differently than men

Dr__Gornik: Dear Rochelle. Thank you for your important question. In general, balloon angioplasty alone is adequate treatment for the narrowings of FMD, so we do not NEED to place a stent. This is very difficult from atherosclerotic vascular disease, where placement of a stent is the standard of care for renal artery stenosis. In addition, we have noticed that some patients with renal FMD have had difficulties with stent fractures and stent renarrowing. Because of these, we generally recommend stent placement for renal FMD ONLY if necessary after balloon angioplasty (if angioplasty alone fails or if there is a renal artery dissection). I should mention that carotid disease and carotid dissection related to FMD is different than renal FMD in the sense that stents are more often needed.

In terms of angioplasty versus stenting in general, it is often a complex decision. Because of this, it is important that an FMD patient is cared for by a vascular interventionalist who is experienced specifically in the care of FMD Patients.

MaureenW: Any concerns with the "angio seal" with us with FMD? Have heard of a few people that have not responded well to this plug.

Dr__Gornik: Our interventional team generally does not use closure devices such as angio seal for the FMD patients because there is a chance of FMD involvement of the femoral arteries. I have also seen some groin complications in FMD patients with angiograms such as small tears or dissections of the femoral arteries or pseudoaneurysms. So - I think particular care needs to be taken in obtaining groin access for FMD patients undergoing angiography.

LRussell: We have heard conflicting information on the use of stents to treat stenosis due to arterial dissection in the carotid artery. Is there any new information available on this? The IR we spoke with "does this all the time with FMD patients" yet we have heard from others - Don't do it! (i.e. risks of tearing are too great)

Dr__Gornik: Dear LRussell. While balloon angioplasty alone is usually effective in treating blockages due to FMD (the webs in the strings of beads), dissection and aneurysms is different type of problem. In many, if not most cases of carotid dissection, a stent is needed to correct the tear in an artery.

Ginsum2010: Any new info into stenting an internal carotid dissection (very high up) or is it still not recommended?

Dr__Gornik: Stenting for carotid dissection depends on the particular case. Patients with neurological symptoms with carotid dissection, development of an aneurysm (called a pseudoaneurysm), or intractable headaches related to the dissection would be at least considered for carotid stenting here by one of my vascular or neuroninterventional partners.

Bridget: Are medications prescribed for osteopenia ok to take if you have carotid stents?

Dr__Gornik: Bridget --- please check with your pharmacist regarding the specific medications you are taking for interactions.

Reidj2: I have had a renal artery that had FMD replaced with a harvested artery from my body. Is this new artery at risk any more or less than any other artery?

Dr__Gornik: Hi Reidj2. Good question. It sounds like you had a bypass graft done. In general a bypass is done with a piece of vein, but in some cases, a renal bypass might be done with an artery from the pelvis (called the hypogastric artery). These arteries generally do not develop FMD and FMD does not happen in veins, but in some cases, a different process called “intimal hyperplasia” can develop (which is different than FMD though it looks similar under the microscope) which can lead to renarrowing of a bypass graft.

Koogyboo: Hi I'm a male, 44 with renal FMD is plavix a rest of my life deal? I am a dairy farmer, lots of hard work, what effect will that have?

Dr__Gornik: Dear Koogyboo. I generally do recommend some sort of antiplatelet therapy for patients with FMD, but the specific therapy (aspirin vs. clopidogrel) depends on the severity of disease, location of disease, and whether a prior angioplasty has been done.

Tracyvdg: I am concerned now that I see maureen's question on the angio seal. is the mynx such a device. that was the device used in my last renal angioplasty for closure.

Dr__Gornik: There are many different types of closure devices used after angiogram procedures, and I believe the Mynx is a newer device. I don’t have any specific data on FMD and closure devices, and many centers use these devices, our interventionalists generally do not, especially if the patient has FMD in the leg arteries.

For everyone on the chat, if you have questions about why or why not a closure device is to be used following your procedure, this is a good question to ask the vascular interventionalist when he or she is explaining the procedure to you.

EliC: The "angio seal" seemed to be SO much better than decades ago and I was home in hours instead of days. Is that not true now and do I need to worry that my groin artery is damaged?

Dr__Gornik: Dear EiC, I don’t want you to get the wrong message from my prior comment. Angioseal closure devices are fine for some patients with FMD and are used routinely at some centers. At our center, our interventional team generally does not use them. If you are doing fine after the procedure, it sounds like the Angioseal its job week.


Follow up with Physicians

tjvan77: What test should be done as part of the follow up protocol once FMD is under control?

Dr__Gornik: Good question. It depends on the location and the severity of FMD. In many cases, disease can be followed with an ultrasound study. In some cases, such as brain aneurysms or certain types of carotid or vertebral artery dissections, tests such as a CTA or MRA are needed.

sk12: I have a diagnosis of FMD involving the cervical internal carotid arteries both left and right. The proximal intradural portion of the left vertebral body is not well visualized. The distal intradural portion of the left vertebral artery is visualized, but told this may reflect some retrograde filling. There is a suggestion of occlusion of the intradural portion of the left vertebral artery. With this said my doctors brush me off. I have constant pain in left carotid artery. I recently had to change doctors due to insurance and was told by my doctor that I had too many tests last in 2008. My left side of neck is swollen all the way up to Jaw. My new doctor did not listen to my carotid arteries either. Dr. Gornik I do not agree w/new doctor I think that I should have some kind of testing at least every two years. I also have symptoms of TIA's numbness on right side, face and leg when under stress. I also experience at times sensitivity top of head.

Dr__Gornik: Dear SK - it definitely sounds like you have carotid and possibly vertebral artery FMD. This requires some follow up and I also do periodically repeat ultrasound studies on my FMD patients. I also recommend anti platelet therapy such as aspirin. That being said, some of your symptoms such as the neck swelling and pain really don't sound like they are due to the vascular disease. Please remember that even if a patient has FMD, FMD can't be blamed for all of the patient symptoms. I think you need to be evaluated by an experienced physician in terms of carotid FMD - perhaps a neurologist in your area.

puzzled: I am wondering if you could recommend any neurologists or vascular doctors that are familiar with narrowing of internal jugular veins? We live near Burlington, VT, but are willing to travel (Boston, Manchester, NH, NY, and Cleveland Clinic!). Thanks.

Dr__Gornik: FMD has not been reported to cause venous disease, and I have certainly never seen a case of this. There are some rare disorders that can narrow veins - I would recommend a vascular surgeon or vascular medicine doctor and of course we would be happy to see you here.

NurseAlicia17: Hello. I have recently been diagnosed with FMD. When the Dr. A went in to place the balloon into the arteries of both kidneys, he found that he could not do that. The "bead-like" damage to the arteries were extensive, Dr. A stated that he had never seen it gone so far into the branches of the arteries. Dr. A made a video of the damage and was going to contact his colleagues for further advice. Dr. A said that we were going to "wait" to see what happened. That there wasn’t anything to do right now. Dr. A is a top-notch Cardiologist and mentored under Dr. Olin at the Cleveland clinic. Is this normal practice for extensive damage to the arteries of the kidneys? My bloodwork has come back with everything in normal limits. So, his thought is to wait until my kidney's start failing? I am a 40 YO female, nurse, basically healthy- except for 2-3 migraines a month and HTN. Should I get another opinion?

Pam_Mace_RN: Dear Nurse Alicia - yes I would suggest you seek another opinion. Treatment depends on symptoms and severity of disease. You do state you have HTN - I would be curious to know how many meds you are on and if it is controlled. Some patients that are not candidates for angioplasty may require bypass surgery - I suggest another opinion and possible evaluation by a vascular surgeon.

Dr__Gornik: Sometimes angioplasty alone cannot treat extensive branch vessel FMD and in some cases renal artery bypass or even something called bench reconstructive surgery is necessary.

Sk12: How often should a patient w/FMD have a follow-up w/their doctor and testing? I went two and half years having problems know in left carotid artery doctors just brush me off. Told I had many tests in the pasts MRA's/MRI's some due to falls from work. What do you recommend?

Dr__Gornik: Dear sk12, the frequency of follow-up and the need for repeat imaging studies depends on the severity of your disease and what blood vessels are involved. Every patient is different. All patients with FMD do need careful medical follow-up.

Sk12: Sorry, I have been having trouble w/computer questions taking off on me. Question Please It a fact that it takes years for FMD to progress in carotid arteries, therefore, no yearly testing is required unless one has symptoms? Thank you

Dr__Gornik: Dear sk12, there is very little information in the medical literature about how quickly or slowly FMD progresses, and I hope the FMD patient registry will provide important insights on this topic. That being said, in my experience, FMD does not seem to be a disease that rapidly progresses for most patients.

Jlstick: Had angiogram for renal art. ansy 8 years ago and was told at that time I had FMD. I go every 3 years for CT Scan and see a vascular surgeon. Am I doing enough to keep an eye on FMD? BP and flow are great. I am diabetic though.

Dr__Gornik: Dear Jlstick --- difficult to answer your specific question without seeing and evaluating you. I would probably query your vascular surgeon if a carotid ultrasound should be done and if there is a need to look for aneurysms anywhere else in your circulation.

Miss: I was just diagnosed with FMD renal arteries. I have had HTN for 6 years with chronic headaches with increase severity, recent colonoscopy due to years of GI distress, this was normal, IBS diagnosed, MRI of brain showed changes in whitematter related to HTN, labs within the last year have been good, last done 3/10. I went for the renal ultrasound per my request as they have been variable with an increase in meds. This was found. I will be seeing a vascular surgeon tomorrow, what should I be asking at that time or requesting for screens to proceed with further treatment?

Pam Mace: Dear miss, I am sorry we were not able to respond before your doctor’s appointment.

RoRo: Pam- thanks for your answer to my previous question regarding exercising while having FMD of my carotids and having a dissection of my internal carotid. You mentioned that I should have my renal artery checked. I had asked my neurosurgeon about that, prior to my 1st angiogram, and he said it wasn't necessary because my BP is perfect. I have another angiogram in 2 weeks- so you think I should again push to have this done? I am 50 yrs old & like to stay physically active. Appreciate the advice!

Pam Mace: Dear RoRo, I do not remember your specific history. Most doctors doing an angiogram on your carotids would not necessary just check your renals at the same time if there is no indication as there are risk involved. That said a renal ultrasound is non invasive and could easily be done to rule out renal FMD.


FMD and Exercise

Deb: I was diagnosed with FMD in 2007. I had a Cervical and Cerebral Carotid CT Angiogram done in Feb 2010. I have focal FMD of the rt. internal carotid artery indicated by focal narrowing. I also have a focal ectasia of the rt. int.artery . Max. diameter is 7.5mm measured in an orthogonal plane, over twice the size of the normal vessel segment at 3.1 mm.(from the report). How dangerous is this, and I have been lifting weights for 30 years, am I pushing my luck??

Dr__Gornik: Dear Deb. You have carotid FMD and it sounds like some mild beading/ectasia of the carotid arteries. The sizes you describe are not that of a very large aneurysm, which is good news, but I would have to see you and your films personally to make detailed clinical recommendations. As for weight lifting, I generally do recommend that patients with carotid FMD avoid heavy isometric exercises such as free weight lifting, because these exercises may be associated with a risk of arterial dissection, such as carotid dissection. In my practice, I tell patients not to lift more than ~ 25 pound objects, avoid contact sports, weight lifting, scuba diving, and activities associated with sudden jerking head motions.

As for weight lifting, I generally do recommend that patients with carotid FMD avoid heavy isometric exercises such as free weight lifting, because these exercises may be associated with a risk of arterial dissection, such as carotid dissection. In my practice, I tell patients not to lift more than ~ 25 pound objects, avoid contact sports, weight lifting, scuba diving, and activities associated with sudden jerking head motions.

RoRo: I was diagnosed with FMD 3 months ago after a Horner's syndrome in my right eye & subsequent cerebral angiogram found the typical beading. I also have a 2cm dissection of my carotid artery causing 50% stenosis. My followup angiogram is in 2 weeks. (1) I do not remember having any trauma to my neck, so did the FMD cause the dissection? (2) should I limit exercise to keep from getting further dissections? for instance, I take spin (cycle) class. My avg HR was 145, high 170. I've now reduced it to avg 125, high 140 but is that still okay or is it risky?

Pam_Mace_RN: I also presented with Horner's syndrome and dissected my bilateral carotid arteries and left vertebral. like you - I had no trauma and the dissections were due to the FMD. After further imaging I was also diagnosed with right renal FMD so in regards to your exercise I would suggest your renal arteries also be evaluated before you continue strenuous exercise.

sk12: This question is for Pam I read that you stated you caused your stroke running. etc. Does this mean if one has FMD they should not run?

Pam_Mace_RN: Not necessarily. Obviously there was an underlying issue I was not aware of - the FMD. The day I went running I was not aware my BP was elevated as I had never had high blood pressure. When I presented to the ER, my blood pressure was 210/130 which I am sure contributed to my event.

Mimi: I have heard that yoga is not advised for people with FMD. Is that all types of yoga or just the more strenuous types?

Pam Mace:There are no set protocols about exercising and FMD. Based on which arteries are affected and the severity of your disease your doctor can guide you on restrictions. For someone with carotid or vertebral FMD you should be consult with your doctor about participating in yoga.

NurseAlicia17: Is cardio-workouts okay for those with extensive FMD? Running, jogging, jumping jacks, etc.?

Dr__Gornik: As above, it really depends on the severity of your disease, the vascular beds involved, your blood pressure control, and whether you have had issues with arterial aneurysms or dissections. I think the exercise “prescription” is different for every FMD patient.

EliC: Is Wii Fitness ok for later abdominal presentation

Pam Mace:Hi EliC, again with any exercise you should consult with your physician who knows your medical history and arteries affected. I have a Wii fit and love it!

LRussell: Recommended exercises for patient with carotid FMD but is overweight and wants to lost the weight to prevent future issues not related to FMD?

Dr__Gornik: As always, see you doctor before starting an exercise program, but in general, walking is probably the best type of moderate aerobic exercise for overall fitness and weight loss! It also doesn’t require any special equipment.


FMD and Diet

Gina: I have bi-lat dissections in my internal carotids (high up behind the base of my skull bone) and have FMD - it's been a year now and they don't seem to be healing on their own. I've asked to be on half the dose of warfarin I was on - at some point would a baby aspirin a day be enough to help keep me safe from strokes. (I've been feeling a lot better since I've been off BP medicine and lowered my warfarin) And more importantly- are there any foods or other options/vitamins that help heal vascular issues? Thanks - Gina

Dr__Gornik: Gina, there are no nutritional programs of dietary supplements that have been shown to effect dissections or FMD, so I would just recommend a general “heart healthy” and “blood vessel healthy” diet rich in fruits and vegetable. As for carotid dissections, in many cases they do not completely heal or resolve, and that is OK, what is important is whether or not the dissections are causing you symptoms. We have many patients with dissection who still have evidence of the dissection years from the event, but they are completely asymptomatic.


FMD and Pregnancy

fmd4: I'm 30yo, was diagnosed with FMD in my renal arteries ~5 yrs ago, diagnosed with severe hypertension >10yrs ago. I have already undergone 2 renal angioplasties and my blood pressure is still not completely controlled, even with multiple medications. My husband and I have considered having children, however I'm concerned about the medical risks to me and the baby. My OB/GYN and nephrologist have both suggested that I undergo another angioplasty prior to pregnancy, in order to hopefully lower my blood pressure enough to minimize the medications I'm on. I'm not sure that I feel comfortable undergoing surgery, to hopefully then get pregnant immediately, and to then possibly be put on 9 months of bed-rest. I wondered what your thoughts were regarding pregnancy and FMD. Thanks.

Dr__Gornik: Dear FMD4 - your situation is a very complicated and important one. You really need to be seen in an experienced FMD center to determine if an other attempt at angioplasty or even renal bypass surgery should be undertaken - we would be happy to see you here at any time.

Pam_Mace_RN: I would like to add that I agree with Dr. Gornik and it is important that you are seen by an experienced physician who treats FMD. Blood pressure control in pregnancy is very important. Most FMD patients that have considered pregnancy that have contacted me are also considered high risk and should see a high risk OB. There are also patient stories on our website where FMD patients have successfully delivered children that may be of interest to you.

Dr__Gornik: I would also like to mention that many blood pressure medications we used to treat high BP in FMD patients can not be used during pregnancy which makes things more complicated.

NurseAlicia17: Recently diagnosed with FMD, still 40, was just married 4 months ago and there was talk about having another baby. Has people with FMD has successful pregnancies?

Pam Mace: Hi Alicia, you should review the stories on the FMDSA site there are a couple of stories were patients share their experiences of successful pregnancies. Based on where your FMD is and the severity of the disease will make a difference. The patients I have spoken with have all treated by a high risk ob/gyn. I have been contacted by a few patients that were diagnosed with FMD during childbirth due to dissecting so it’s important to be evaluated by someone with a lot of experience with FMD.

Dr__Gornik: I agree with Pam that it’s very important that you be evaluated by a vascular specialist very thoroughly to determine the risk of pregnancy. Every case is different. I also agree with Pam re: seeing a high risk obstetrician, even before you become pregnant (called pre conceptive counseling)


FMD and Genetics

Libsfmd: Is there any genetic testing for finding/confirming FMD?

Dr__Gornik: Great question. I am afraid the answer in 2011 is no. We do offer some clinical genetic testing for FMD patients in whom we suspect an additional blood vessel or connective tissue disorder such as Ehlers Danlos or Loeys Dietz syndrome. We are collecting blood samples in collaboration with Mayo Clinic and hope to do some research on the genetics of FMD in the future. Dr. Nazli McDonnell is a researcher at the NIH whose lab is also exploring the genetics of FMD.

Pam_Mace_RN: To participate in the blood draw and also the NIH research study, information can be found at the FMDSA website.

Vik: I have FMD. I have had my adult children checked. They do not appear to have it. I understand this is hereditary so does that mean they could develop it as they age?

Dr__Gornik: FMD is not always hereditary, and in fact most of my patients with FMD do not have an affected family member. Most important is that your kids discuss their family history with their doctors and that they be followed for high blood pressure.


FMD and Women

southern_belle: It's thought that hormones play a significant role in FMD. What affect does menopause on FMD?

Dr__Gornik: This is an intriguing aspect of FMD epidemiology. Women are far far more likely to have FMD than men. But - some small epidemiologic studies have not found a clear link between hormones, birth control and FMD. We will be collecting some of this information in the FMD patient registry but we all agree in the FMD community that this topic is in great need of extensive investigation.

Pam_Mace_RN: A lot of patients that contact me with complaints of symptoms state that they are worse around their menstrual cycle such as the swooshing noise, headaches and blood pressure spikes. Further research is needed.

SCFMD: Dr. Gornik - Has there been any link with hormonal changes and the onset of FMD - ie menopause?

Dr__Gornik: There are a few abstracts looking at hormone changes and FMD, but I don’t think the data is very convincing at this point and I do think this is an area that needs to be researched further.


FMD and Children

Ghennet: Hi,my name is Ghennet and my daughter was diagnosed with FMD (intimal) in March 2010 when she just turned 6. Two of her four renal arteries(she has two on each side) are affected. She was operated in April 2010 on the right renal arteries - unsuccessfully, takes now medication against her high blood pressure, plus a blood thinner. My question is, she has 2 older brothers, does she and the brothers (who were only checked on the renal arteries and found all right) need regular check ups on all the arteries even with no symptoms, and if so, in what time period? Are there any sports that she should avoid?

Dr__Gornik: Dear Ghennet. Thank you for your important questions. Intimal type FMD is a very different type of FMD than the more common medial type. It tends to present in children and younger individuals and you are right that it can be more aggressive in terms of narrowing of blood vessels (perhaps less aggressive than medial type in terms of dissections or aneurysm). In terms of having your sons checked, if they are children, most importantly they need to be screened for high blood pressure. There are charts that report what is a normal blood pressure for a child of a certain age and height. If they have high blood pressure, than they should be checked for FMD. While FMD can run in families, this is the exception rather than the rule and more likely your sons do not have FMD. In terms of her exercise restrictions, that is a complex decision based on what vascular beds are involved by FMD, how well her blood pressure is controlled, and her medications (blood thinners). This needs to be discussed in detailed with the physician who is familiar with your daughter’s case (pediatric nephrologist, vascular surgeon, and/or cardiologist). I wish you and your family all the best.

In terms of having your sons checked, if they are children, most importantly they need to be screened for high blood pressure. There are charts that report what is a normal blood pressure for a child of a certain age and height. If they have high blood pressure, than they should be checked for FMD. While FMD can run in families, this is the exception rather than the rule and more likely your sons do not have FMD.

In terms of her exercise restrictions, that is a complex decision based on what vascular beds are involved by FMD, how well her blood pressure is controlled, and her medications (blood thinners). This needs to be discussed in detailed with the physician who is familiar with your daughter’s case (pediatric nephrologist, vascular surgeon, and/or cardiologist). I wish you and your family all the best.

Ghennet: My daughter does not have the string of beads - I read that the intimal FMD is the more rare but also more aggressive one. What does that mean?

Dr__Gornik: See answer above. Intimal FMD is less common than medial type. It typically presents with smooth narrowings. It is more aggressive in the sense that it may lead to more severe narrowings and renarrowings after angioplasties. Intimal disease can also involve many blood vessels of the body, especially the renal and mesenteric vessels. In some patients, it is hard to tell intimal type FMD apart from vasculitits, a non FMD condition of inflammation of blood vessels.

Pam Mace: Dear Ghennet, intimal FMD is not as common as the “string of beads” that said it is the most common type of FMD in children. We have a group of parents with children with FMD if you would like to participate in that group please contact me pam.mace@fmdsa.org

The parents support each other and are also able to learn from each others experiences. FMDSA is also starting FMD Groups in different states…details will be out soon.

Ghennet: Hi again, my daughter had nose bleeding today while concentrating on her homework. No other signals - do I have to take this serious in connection with FMD? (she has stenosis in her renal arteries). Thank you for all your answers!!

Dr__Gornik: Nosebleeds are not a common symptom due to FMD directly, but could possibly be related to high blood pressure or certain medications taken for FMD (like aspirin or other blood thinning medications). I would have your daughter evaluated by her pediatrician.

Ghennet: Does it mean, that once you have FMD (renal arteries as a child) it will most probably affect other arteries later in life?

Pam Mace: Dear Ghennet, I think there needs to be more research done in this area. I can tell you that I have spoken with patients that were diagnosed at a young age and some did get diagnosed with FMD in other areas and some patients did not.

Puzzled: I have a 17 y.o. daughter who has been suffering with a constant, daily chronic migraine for nearly 5 years. She had a recent MRV and CTV which showed narrowing of her internal jugular veins. She also had an LP done recently that had a normal reading, though in the past, she has had one with a slightly high reading (26). I’ve been told not to be concerned about the narrowing, but I am. I came across the FMD website and wondered if it could be this? Any suggestions?

Dr__Gornik: Dear puzzled. I’m afraid it’s impossible to say without evaluating your daughter, examining her, and reviewing her imaging. I will say, as above, that FMD does not involve the veins, so I would be worried that she may have another problem.

Puzzled: I understand that the Cleveland Clinic has a service that you can look over medical records and then make a recommendation. I have a daughter that has had a constant headache for nearly 5 years and we are no closer to an answer. Recently an MRV and CTV showed narrowing of her internal jugular veins. How can I obtain this service? Thanks.

Dr__Gornik: Cleveland Clinic does offer a process for medical second opinions --- visit www.eclevelandclinic.org . That being said, whenever possible, I do think it is best to be fully seen and examined by a medical specialist for a 2nd opinion, and not just a review of charts. Narrowing of the jugular vein would not be at all consistent with FMD, and I would be worried there is another problem affecting your daughter


FMD Associated Conditions

Alice: Has FMD been found to effect heart valves? If so, which valves are known to be effected?

Dr__Gornik: While there are some case reports of FMD involving the coronary arteries (and I do think this is rare) I know of no association between FMD and heart valve disease.

Pam_Mace_RN: I also know of no association where FMD has affected the valves, I have been contacted by patients who have coronary FMD and agree this is rare. At the annual meeting in May, Dr. Chris Buller will be coming in from Canada to speak about coronary FMD as he has seen more than 20 cases.

Dr__Gornik: With regards to coronary FMD, this does seem to be a very different disease subgroup than our typical FMD patient with carotid and renal involvement but I am eager to attend the meeting and learn more.

Liz: I have FMD in my kidneys (treated with angioplasty in 2002) however I recently suffered from a dissection in my LAD coronary artery requiring emergency CABG. I am now on a left ventricular assist device as my ejection fraction remained at less than 10% after the CABG. Two options currently exist; either my heart will heal enough to remove the LVAD or I will need a transplant. My question: what is the probability that I suffered the dissection as a result of the FMD and if I am able to keep my heart, do I need to be concerned that it will happen to other major coronary arteries?

Dr__Gornik: Dear Liz. I am very sorry to hear that you are so ill. We have seen a few patients, such as yourself, who have had coronary artery dissections and have FMD in other areas, but this is a rare problem, even among the FMD patients. There is some emerging literature that FMD can affect the coronary arteries in some patients. In addition, we would probably recommend that you be tested for other blood vessel disorders that can cause dissections of coronary arteries, such as vascular Ehlers-Danlos syndrome. With regards to your treatment plan and risks of transplantation, it is not possible for me to give you an opinion without fully evaluating you. I would recommend that you be evaluated by a vascular specialist highly familiar with FMD, a medical geneticist (to rule out other connective tissue problems), and a heart failure/transplant expert cardiologist. I wish you the best of luck.

caitlynn: Is it possible to have adrenal impairment or adrenal exhaustion due to their close proximity to the kidneys when you have renal FMD?

Dr__Gornik: Despite proximity of the renal arteries and adrenal glands, FMD does not generally involve the adrenal glands, so no, FMD cannot cause adrenal insufficiency. However, we have seen some patients who have FMD and also have adrenal problems, such as an adrenal adenoma. I always tell patients that “we can’t blame FMD for everything that ails you” --- need to look for other health problems too when an FMD patient has symptoms.

Lisa: I was diagnosed with FMD a few years ago. I notice that I get a burst of blood vessels in my eyes approximately every few months. I do not see an increase in my BP as a result of the burst, but do notice a slight increase in headaches. Is this a subtle sign of something going on internally?

Dr__Gornik: Hi Lisa, like all of my patients with renal FMD, especially those with headaches, I would recommend evaluation for possible carotid FMD. However, I don’t think what you are describing (the burst blood vessels are called subconjunctival hemorrhages) are at all related to FMD. These can happen to anyone, especially if you are on aspirin or other blood thinners. See your primary care physician or eye doctor about this.

LRussell: Is there any correlation between FMD and MALS (median arctuate ligament syndrome)? As in, does there seem to be a higher prevalence of patients experiencing the problematic symptoms of MALS if they have FMD as well? I had never heard of MALS before my partner was diagnosed with FMD and now she has MALS and we have a friend who has FMD & MALS, so just wondering if this is a coincidence or if there might be more to it.

Dr__Gornik: Dear LRussell - a very timely question. One of my fellows is now working on a research project on this topic. MALS = compression of the celiac artery, which supplies the stomach, liver and spleen and is above the renal arteries. The artery is gently compressed by parts of the diaphragm called the median arcuate ligament. The tricky thing is that this compression is very very common but it can cause symptoms in a small percentage of patients. Usually abdominal pain, especially after eating and weight loss. We have noticed many of our renal FMD patients also seem to have median arcuate ligament compression physiology on their ultrasounds and we are figuring out if this is possibly related.

Dr__Gornik: It is tricky because this compression is very common among women and women are our FMD patients in most cases - so stay tuned.

Onekidneygal: Good Morning Dr. Gornick and Pam: Myself and several other FMD patients I know have been diagnosed with Mals. Is this something that you are noticing in FMD patients? If so why might this occur in FMD patients? Thank you again!

Dr__Gornik: Please see answer above. Median arcuate ligament compression is compression of the celiac artery which supplies blood flow to the stomach, spleen, and kidneys, by part of the diaphragm. We are seeing some median arcuate compression of the celiac artery in our FMD patients, but this is a common finding in women in particular, and in most patients it does not cause symptoms. We are doing a research project here to see if this is at all related to FMD… stay tuned.

Mimi: I have a son with club feet and a brother who had spina bifida. I have read that club feet is a foot abnormality of the tendons and ligaments and that club feet may be associated with spinal abnormalities such as spina bifida . Is it known yet whether there is a connection with these 2 conditions and FMD?

Pam Mace:Hi Mimi, to my knowledge there is no association.

Mimi: I have had 3 metatarsal stress fractures in my feet. My internist says that I have a small amount of osteopenia in my spine but none in my hip. I also have had many other problems with my feet. Could my FMD be any way related to these problems?

Pam Mace:Hi Mimi, I have never heard of any association of FMD and osteopenia or problems with feet.

Dr__Gornik: Mimi, the only potential connection that readily comes to mind if you also have an underlying connective tissue disorder which can be associated with both vascular changes of FMD and perhaps some bone abnormalities. The other confounding issue is that osteopenia is common in women of middle age – and these are the same women who are at risk for FMD

Ginsum2010: Hi - are there any links found to medicine allergies or hormone deficiencies?

Dr__Gornik: There is an abstract or two related to sex hormone levels or FMD, but I do not think these data have shown any clear link. What is tricky is that most FMD patients are women, so most of us in the field do think there is some gender specific influence or tendency, but more research is needed to figure this out.

Kaulrich: CCF recently hosted: Management of Connective Tissue Disorders and Latest Research:Bicuspid Valves, Marfan Syndrome, Loeys-Dietz Syndrome, Ehlers-Danlos, and Related Diseases which included FMD. Was there any talk in collaborating with these connective tissue experts in finding out why so many of us have Ehlers-Danlos connective tissue features, and what kind of medical support their will be in the future for us?

Pam Mace:This was a great conference and Dr Gornik did a great job presenting FMD! Her talk generated a lot of interest! FMDSA had a booth and contacts were made. The details will be in our upcoming newsletter and on our web site. I would also like to say that I only know of one patient who actually has FMD and Ehlers Danlos “ EDS”. Patients who have contacted me saying they were tested for EDS have all had negative results.

I would also like to say that I only know of one patient who actually has FMD and Ehlers Danlos “ EDS”. Patients who have contacted me saying they were tested for EDS have all had negative results.

Kaulrich: From what you have seen at the CCF do you feel that FMD may be a symptom of a larger connective tissue disease that has not been identified?

Dr__Gornik: Hi. Yes, I do think that in many cases, the beading, dissections, and narrowings that we see in FMD may be a manifestation of a disorder of connective tissue or blood vessel wall. We are just starting to research this aspect of FMD. Please stay tuned.

dpmbsG: Is there any connection between FMD and RA? I have FMD in the carotids, renals and brachials and have had multiple bypasses, angioplasties and stents over the past 6 yrs since being diagnosed. Recently, I have been experiencing constant pain in my joints, most notably in my fingers. My sister and aunts have RA but none have FMD.

Dr__Gornik: The classic definition of FMD is that it is a blood vessel problem that is NOT inflammatory, unlike rheumatoid arthritis, which is an inflammatory process. They are not directly related. That being said, both are conditions that are common in women.

Phillip: Is there any medical literature that focus on FMD of the coronary arteries that resulted sudden death of an 18 year old african american male?

Pam Mace:Hi Phillip, To my knowledge there is no medical literature on such a case. I think I am aware of the case you are talking about, about a year ago somewhere in the south. The newspaper articles written by reporters never clearly

Dr__Gornik: Dear Phillip: Please see answer above. True coronary FMD is very rare and different than the FMD I see in the large majority of patients in my practice. This is an area that clearly needs to be researched further.

Slywiz: Submitted this, but no answer...yet. I have renal and carotid FMD (probably also cranial) Just diagnosed with gastroparesis. Is this likely to be related? Mesenteric?

Dr__Gornik: Dear slywiz, gastroparesis would possibly be related to FMD if the blood supply to the stomach is severely limited. It would be important to rule out other causes of gastroparesis (such as diabetes, certain neurological problems).

Bridget: the white matter issue was seen at age 50 and then with the whole dissection issue and FMD diagnosis. I had cognitive testing and it was seen that I was deficit in areas. I am trying to deal with those deficits but people keep telling me I am fine, but I know that I am not. I am profoundly changed. If that is the case then I will adjust my lifestyle and deal with an impending unraveling, but if there is anything I can do to prevent it or intervene I would like to know how!

Dr__Gornik: Dear Bridget. It’s difficult to comment without the specific details of your case. White matter disease on an MRI is a common finding, but it would need to be correlated with other health issues, such as diabetes, hypertension, and also presence and severity of carotid FMD.

Jeniello: Is there a connection between a rapid heart rate and FMD?

Pam Mace: Hi Jeniello, I know of no correlation between FMD and a rapid heart rate. I am aware of FMD patients that have issues with a rapid heart rate but in their case it has nothing to do with their FMD. Dr Chris Buller will be speaking at the FMDSA annual meeting on coronary FMD, it will be very interesting to hear what he has to share.

Dr__Gornik: I agree, but certainly patients with FMD can have other health problems.

K279: My mother has FMD of her kidneys. She has lost 1 kidney already and last I have heard her "good" kidney is only functioning at 46%. this is very scary as she is only 51yrs old. Is there anything she maybe able to do to prolong the life of her kidney? And she has chronic pain pretty bad. Do you know is there any association with Chronic pain and FMD? Thank you

Dr__Gornik: Dear K279. I am sorry to hear about your mother’s health problems. She should be seen by a nephrologist or kidney specialist who is experience in caring for patients with FMD. There may be certain medications that may help preserve her kidney function, and it would also be important to be sure that the artery to her “good” kidney is not severely blocked.

Pam Mace: Dear K279, How nice that your mother has your support and your advocating for her. It’s important that your mother have regular follow ups with her physician to watch her renal function and monitor her blood pressure. As far as the chronic pain I am not sure if you mean, pain everywhere or flank pain related to her kidney.


FMD Research and Registry

Elizabeth: Stroke Dementia and Abdominal artery blockages. Renal FMD now stented in Celiac and Superior Mesenteric. Several women in my family have had vascular and bowel problems in later life. Is this a Senior age presentation of FMD? Do more case studies need to be gathered? Does NIH share its study results with the wonderful physicians like Dr. Gornik & Dr. Kim? Do we have to wait years? Also thanks to helpful fmdsa.org folks who act as links to all of this.

Dr__Gornik: Hi Elizabeth. Thanks for your e-mail. It sounds like you have a striking family history of FMD. A number of groups, including our own in collaboration with the Mayo clinic have begun to look at the genetics of FMD, but this work is in the earliest stages. Clearly there is much work to do in this area in the years to come. I know the NIH group has published an abstract related to families with FMD and some other features of connective tissue disease.

Pam_Mace_RN: Dear Elizabeth - We collaborate with the NIH although we do not see the data before it is released to the public. Once the data is released, and we have rights to publish, it goes up on the FMDSA website - http://www.fmdsa.org

Angel: Dr. Gornik? Regarding the current FMD clinical study, are results being tracked for levels of parathyroid hormone and calcium (another hormone) levels of the FMD participants?

Dr__Gornik: Dear Angel. There are a number of ongoing research projects in which we are participating at Cleveland Clinic, and I can only address those projects. The FMD patient registry, sponsored by FMDSA and coordinated by the University of Michigan is a 7 site registry collecting information about FMD patients including their past history, symptoms that led to diagnosis, extent of vascular disease in FMD, imaging studies, procedures, and clinical outcomes. If a patient has another medical condition, such as parathyroid problems, it would be documented on the medical history form where we collect information. We are also collecting a biorepository of blood samples from our patients with FMD and their family members and we are collaborating with Dr. Kullo at Mayo Clinic who is also storing blood samples from FMD patients. I do not suspect calcium or parathyroid hormone issues are related to development of FMD… I have only seen this once or twice in many FMD patients, and I have done an exhaustive review of the medical literature. There is no known link between calcium metabolism and FMD. So in answer to your question, this is not planned for a major analysis, but the registry would be able to track if there were a significant number of patients with FMD who have parathyroid problems.

Lois: Has there been any new developments over the past year in understanding and treating FMD ?

Pam_Mace_RN: Some of the data from the registry has been analyzed and findings will hopefully be presented this spring. Any findings should be recapped and discussed at our annual meeting May 14 in Cleveland, OH.

Dr__Gornik: I also know the American Heart Assoc is sponsoring a state of the art review paper on FMD. Hopefully that will be published within a year.

Ronni: Hi Dr. Gornik, just wanted to ask something concerning our registry. I was recently diagnosed with Sjogrens Syndrome and now the dentist said Mom's mouth is very dry too. Since this is autoimmune related, can it somehow be related to FMD? Thanks.

Dr__Gornik: Hello Ronni - nice to hear from you. I don't think FMD and Sjogrens are at all related. We do not think FMD is an autoimmune disease - that being said, I would definitely have your mom evaluated carefully

Pam_Mace_RN: Hi Ronni - I have never been contacted by another patient with a complaint of dry mouth.

LRussell: How many FMD clinical trials are currently running and is there one place to get info on all of them?

Pam Mace:There is a research section on the FMDSA web site where we list any research that we are aware of. We also post updates on our FMDSA facebook page.

Dr__Gornik: I agree with Pam, but would add that most of the studies on going are being done to better understand FMD, why it develops, the natural history. I do not know of any trials of drugs or devices specifically for FMD treatment at this time.

Kaulrich: Any new information on the Gendia FMD study?

Pam Mace:To clarify the study that FMDSA is funding is not a Gendia study. There is no information available at this time as research takes time and it is still being conducted. Once data is available and we have permission to release it, the data would be posted on our web site and I am sure an announcement would be made. At a minimum it will be months before we have any thing to report.


FMD General

Sharon: Diagnosed with FMD age 70, but did I always have it? Second question: Should I be going to a women's Heart Health clinic, or do nothing, or what? No stroke.

Dr__Gornik: Sharon, we are seeing more patients diagnosed with FMD in their 60s, 70s, and sometimes even 80s. We generally believe the FMD has been present for many years before the diagnosis is made, but it is impossible to tell how long this has been. In many cases the FMD is what we call an “incidental” finding when a patient has a physical examination and bruit is heard or they undergo an ultrasound or CT scan for another reason such as neck pain, etc. I would recommend that you are evaluated by a specialist who is familiar with FMD. If you have carotid FMD, that would be a vascular specialist (vascular surgery, vascular medicine, some cardiologists) or a neurologist or neurosurgeon in most cases.

carolel: Can it occur throughout the body or just in certain systems?

Dr__Gornik: FMD is an enigma in that some patients have disease in multiple vascular beds from head to toe and others in just one. I would say about thirty to 50 percent of FMD patients have disease in multiple vascular beds - the most common areas involved are renal, carotid arteries but also brain arteries, mesenteric arteries, and the arteries to the arms or legs.

Pam_Mace_RN: I agree with Dr. Gornik and would like to add that in children the mesenteric and renal arteries are more commonly affected - that said, we do have a couple families where the children also have carotid involvement.

Lois: Is FMD a progressive disease in most cases?

Dr__Gornik: In my experience, the common type of FMD called medial fibroplasia usually is not progressive. Intimal disease can be progressive in terms of narrowings. Overall though, we are just now learning more about the natural history of FMD over time, so please stay tuned for the FMD patient registry.

Kaulrich: Would you consider FMD to be a rare disease? Or is that changing?

Pam Mace: Technically the definition of a rare disease is “any disease or condition that affects less than 200,000 persons in the United States, or about 1 in 1,500 people” we have no statistics to prove how many patients are affected by FMD. That said FMDSA has newly diagnosed patients contacting us almost daily, so I refer to the disease as an under diagnosed disease. With more funding for research and as more patients are getting diagnosed, one day that may change.

Dr__Gornik: I don’t think it’s as rare as we initially thought, but I don’t think it is a “common” problem. We need more data, like population based screening programs, to figure out the true prevalence of FMD.

EliC: From all I can tell Dr. Gornik and Pam Mace are the true heroes for us. Do they know how much we appreciate them?

Dr__Gornik: Thank you!

Pam Mace:Dear EliC, Thank you for your kind note. Dr Gornik has been a huge supporter of all of the FMD patients and FMDSA. If it were not for Dr Gormik and Dr Jeffrey Olin we would not be where we are.

Onekidneygal: This has been a very informative chat! Thank you Dr. Gornick, Pam Mace,FMDSA and the Cleveland Clinic!!

Dr__Gornik: Thank you!

Pam Mace: It has been for me as well. I am very impressed with the level of questions that are being asked. Great questions!

Bridget: good night from India! thank you so much for your efforts and dedication addressing this particular variation in the genetic pool. Self help is crucial for helping to live and accept the side effects of these unusual variations

Dr__Gornik: Thanks for joining us!

Pam Mace: Sleep well India!

EliC: thank y'all

Dr__Gornik: Of course!

Pam Mace: You are welcome. This is a great learning experience for all of us!


FMD Care at Cleveland Clinic

Pam_Mace_RN: As I wrap up I have gotten questions about the concierge program at the Cleveland Clinic. As far as finding a knowledgeable FMD specialist close to you, you can contact FMDSA at http://fmdsa.org - or email me at pam.mace@fmdsa.org .

Dr__Gornik: I wanted to let the chatters know that our FMD Clinic now runs every Wednesday at the main campus at Cleveland Clinic. Dr. Esther Kim, my partner and I see patients weekly and consult with other members of our FMD team as needed. My FMD clinic nurse, Ms. Kathy Petrarca, contacts patients a few weeks before the visit to ask about symptoms and plan for any testing or consultations needed. If you are an out of town patient, or an out of country patient, we can help linking to our medical concierge or international office for planning your visit. We try to be accessible to our FMD patients. To schedule an appointment, please call my office at 216/445-3689.

Dr__Gornik: Thank you for having me. Now back to seeing patients.

Pam_Mace_RN: Hope to see you all at the FMDSA conference in May at the Doubletree Hotel, downtown Cleveland - May 14th.

Dr__Gornik: To accommodate our out of town patients, Dr. Kim and I are opening up 3 or 4 full days of FMD clinic around the time of the annual meeting. Call after the new year to book your appointment.

ginsum2010: Please ladies if you haven't attended the conference in Cleveland make it a priority to go this year! I went last year for the first time and the support and information was amazing - you won’t be sorry you went!

onekidneygal: Will your office still be able to accommodate patients who come in for the FMDSA conference if your clinic is on Wednesday?

Dr__Gornik: We will offer many appointment options around the conference.

Indysen: Thank you.

Technology for webchats paid in part by an educational grant from AT&T Ohio and the AT&T Foundation (formerly SBC).

Reviewed: 12/10


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