South African Teen Receives Care for Rare Vascular Disease

South African Teen Receives Care for Rare Vascular Disease

Faces of FMD Part 2

CCF Web Chat with Dr. Gornik / Fibromuscular Dysplasia

Cleveland_Clinic_Host: Today's Online Health Chat "Fibromuscular Dysplasia" with Dr. Heather Gornik will begin in 5 minutes at 12:00pm(EST). Submit your questions by typing in the box below and then click "Ask a question".

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!

Cleveland_Clinic_Host: 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.

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.

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.

Cleveland_Clinic_Host: We received a large amount of questions for today's chat and Dr. Gornik and Pam Mace will try to get to as many as they can. If you have already submitted a question, it has been added to the queue.

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

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 warafrin I was on - at some point would a baby asprin 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 warafrin) 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.

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, 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.

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.

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.

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.

jeniello: Would Diovan 320mg's effect 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.

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.

Pam_Mace_RN: 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.

Deb: I was diagnoised 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.

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.

Dr__Gornik: 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: 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.

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 arterie - unseccessfully, 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 allright) need regular check ups on all the arteries even with no symphtoms, 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).

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.

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.

Dr__Gornik: 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.

Dr__Gornik: 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).

Dr__Gornik: I wish you and your family all the best.

kradik19: Hi Dr. Gonik, 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, Tracy

Dr__Gornik: Dear Tracy - 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.

Cleveland_Clinic_Host: For those just joining, we are chatting with Dr. Gornik from the Cleveland Clinic and Pam Mace RN from FMDSA, who are taking your questions on fibromuscular dysplasia . If you would like to review what already has been discussed, please click on the 'Transcript' button above. If you would like to submit a question, please type in the text box below and click 'Ask'

Dr__Gornik: 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.

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.

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 side of neck is swollen all the way up to Jaw. My new doctor did not listen to my carodid 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 symtoms of TIA's numbness on right side, face and leg when under stress. I also experience at times senitivity 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.

sk12: My questions took off twice sorry. 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.

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.

Mary: This is for web chat...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 cerbral 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 oclock 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 somehwere in this country to answer my questions about it? What kind of medical test do i get to detect changes in my white matter (eg 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 arobics 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.

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.

Kriste: have had high blood pressure for at least 4 years that has not responded to medication. I was finally diagnoised with FMD in aug and had an angiplasty 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 angiplasty 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 "hemerrage 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.

tjvan77: What test should be done as part of the follow up protocal 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.

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.

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).

Dr__Gornik: 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.

Dr__Gornik: 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.

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.

Dr__Gornik: 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.

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.

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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.

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 wan'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.

MallK: In 2001 I experienced an intracranial hemorrhage from a spontaneous dissection ot 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.

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.

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.

Dr__Gornik: 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.

Cleveland_Clinic_Host: We are getting ready to close for today. A large number of questions were received and we apologize if we did not get to your question. We will try to answer as many questions as possible in these last few minutes and Dr. Gornik and Pam Mace will continue to answer your questions after we close. Their answers will be available on the transcript.

Cleveland_Clinic_Host: If you have additional questions, please go to clevelandclinic.org/health/livepersonchat to chat online with a health educator.

carolel: Can it occure 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.

Cleveland_Clinic_Host: We also have Heart and Vascular nurses available to chat live through our website at www.ccf.org/heart

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.

Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Gornik and Pam Mace RN is now over. Thank you again for taking the time to answer our questions about fibromuscular dysplasia.

Cleveland_Clinic_Host: We will continue to answer your questions after we close and will have the information available on our transcipt. It will be available on our site at clevelandclinic.org/webchat

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

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

Dr__Gornik: To accomodate 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 wont be sorry you went!

onekidneygal: Will your office still be able to accomadate 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.

Faces of FMD

In Memory of Haley,  Fibromuscular Dysplasia (FMD) can affect children and adults. Help us fight an under diagnosed vascular disease through research, education and support. Your vote can make a difference. Text 103887 to Pepsi (73774) or log on through Facebook at:http://www.refresheverything.com/mwva