Thank you so much; this was clear and helpful. I was diagnosed about 6 months ago with FMD in my carotids; it's true that often in the support groups, people seem to offer "one size fits all" advice, which doesn't make sense. Your video is in line with what my FMD specialist at Hopkins said. I appreciate that you made the video!
Excellent presentation! I had a SCAD this year followed by a diagnosis of FMD. I would be interested in your opinion on statins along with aspirin and BP meds as medications for SCAD/FMD. Thanks!
Thank you for taking the time to comment. I am sorry to hear about your SCAD. I hope we can get to making a video about medical therapy after SCAD. That would be a great resource.
I was recently diagnosed with FMD at age 27 and these are some questions that I've been thinking about. There are no FMD specialists in the region where I live. If you're able to provide input or add them to your next Q&A video, I'd greatly appreciate it! What are the links between FMD and hormones, and should women with FMD be using hormonal birth control methods? What are the risks for pregnant women with FMD? What are the recommendations for the consumption of caffeine, alcohol, and cannabis for FMD patients? What is the ideal blood pressure range for FMD patients? Thank you for this video and for the work that you do!
Thank you for the support and for the extra questions. I can’t promise when a new video will come out, but when it does I will definitely try to incorporate your questions. In the meantime, please explore fmdsa.org to see if there’s a provider in your region.
This was super helpful because I was diagnosed 5 months ago. I’m so scared but your video helped me a lot! If you do another video, I’d love to hear your thoughts on HRT in menopause with FMD!! Thank you!!
I would also love to know your thoughts on HRT. I was recently diagnosed with FMD as a result of a dissection in the right carotid artery. I was on HRT during the dissection but have since stopped taking due to risks. I am curious to hear if any other HRT recommendations are available for women with FMD going through menopause.
That’s a hard one. There’s a theoretical connection between estrogen exposure and FMD. But it is likely not direct. So we don’t know specifically if HRT is problematic or not. So it becomes a decision that needs to be made while weighing the need and possible harm.
While I cannot comment about your case, the question of hormones (estrogen) and FMD is still "open". While FMD is more common in women, we do not know of a specific mechanism for estrogen (or HRT) to cause or exacerbate FMD.
Thank you so much I was just diagnosed two weeks ago as I had mystery pains over the last three years I had stabbing pains in my abdomen my breast and my neck dizziness tinnitus the whole works however, I felt like someone chopped my head in half and I ended up in the emergency room and they did CAT scans. I am still undergoing a lot of testing, but the CAT scan showed beating on my carotid artery And I am a 52-year-old female Thank you!!
Thanks doctor, very informative. You asked for other questions, so here is one: I was diagnosed with FMD two years ago. Why should I bother taking statins when I don't have high cholesterol and never have? There doesn't seem to be any real data from scientific studies on the effectiveness of statins or even beta blockers on FMD. Doctors seem to follow the standard arteriosclerosis treatment protocols.
Thank you for this question. While I can’t offer specific advice for you I am happy to say something general about statins in FMD. Like you said, they are not part of the standard FMD treatment. We offer statins to patients with either high levels of cholesterol, or those who had cardiac or vascular events or to people at high risk for such events. I hope that is helpful. I urge you to discuss with your team before making specific decisions.
Thanks for the presentation. Wife has been confirmed with it after some mild stroke symptoms and CT scan. We are implementing immediate lifestyle changes and waiting to see a doctor at the stroke clinic.
This was helpful. I was diagnosed about 6 montgs ago by CTA of the neck. Now unfortunately I was told I need to see a kidney Dr. The kidney Dr says I need a vascular Dr. The vascular Dr said there no way to definitely diagnois FMD and Im fine. I was then sent to Neurology for my headaches who now says this is not being taken care of you need to go back to vascular and I want you to see a Neurologist stroke specialist. If you ask me no one around here knows enough and each dr just keeps passing me off to some other Dr.
Thank you very much for this video. I wish I could have had the privilege of having this information back in 2004 when I lost my kidney due to FMD. I have been struggling with FMD since I was 20 years old. Lost one of my kidneys due to an aneurysm caused by FMD. When I was diagnosed not many vascular surgeons were aware of this condition. I am taking 11 pills to control my chronic renal hypertension. Unfortunately, my personal MD keeps adding more medications instead of referring me to a Physician who is familiar with FMD outside the healthcare organization where I belong. (Kaiser) Even though none of their vascular surgeons treat this condition. The side effects of all these medications have made my quality of life so miserable. Thank you again.
I am very sorry to hear about your journey with FMD. I believe there are some physicians at some Kaiser locations who do have expertise in FMD. I hope you can meet one of them. All the best.
Thank you so very much for this video Dr. Weinberg. I've been recently diagnosed (incidentally) with FMD of distal left internal carotid artery and a dissection and also a 6x2 mm pseudoaneurysm of left vertebral artery in neck with a "suggestion of a beaded appearance." I have never experienced any symptoms whatsoever. I saw an interventional radiologist as my first doctor appointment. He suggested 325 mg. of aspirin and recommended yearly scanning. In your video you recommend 81 mg. In addition, my nephrologist bumped up my BP meds also and ordered a renal arterial duplex ultrasound. Results are pending on that. I would appreciate your thoughts if you feel appropriate on commenting here. Thank you.
Unfortunately, I am unable to offer specific clinical advice. I am sorry. I would recommend that you go to fmdsa.org and find an FMD doctor in your area. All the best.
Very helpful video. I had sudden onset, very high blood pressure in my late 30’s. In June 2018, at 59 years of age, I had a SCAD, AMI, that lead to a cardiac arrest. While in the hospital, it was discovered that I have FMD in my Internal Carotids, Renal Arteries, and Iliac Arteries. Currently, I have been found to have an Iliac Artery Dissection, and narrowing in the other Iliac Artery. I am my doctor’s first and only patient with FMD, and it is very difficult to find good information on my condition. I also have a recently found brain aneurysm, and do not know if it is FMD related. I have decided that most specialist doctors I have seen, are more focused on what they know about atherosclerosis, than how FMD acts upon a given artery. FMD is unique, and wonder if these doctors, whom most likely know little of FMD, understand how FMD affected arteries act on say vascular labs. With my current Iliac Dissection, I feel that the Vascular Surgeon is brushing me off, after all, my arteries are not plugged up with plaque. I really appreciated how you described in Question #8, how the flow pattern of FMD on ultrasound, is not the same as in atherosclerosis. Thank you for this video.
Thank you for sharing and for appreciating the video. I am sorry about all that you went through. Depending on where you live, there may be an FMD doctor in your area or close enough.
I live in British Columbia. Canada and want to find a specialist that understandsand trwats FMD. I have not been formally diagnosed but have test results indicative of FMD and the internist is talking about it. Very difficult to look up specicically specialist for western Canada.
Just diagnosed with FMD in my carotids, haven’t had other arteries checked yet. I am a runner for 25 years. I have run marathons in the past and now keep my running to half marathons and trail running. I am more apt to pace myself to go the distance than try to break speed records. I run my heart rate. When I feel it starting to elevate to an uncomfortable level I dial my speed back to keep the HR consistent aerobically. I also avoid running in hot sunny weather as it elevates my heart rate quickly. Is aerobic exercise/ running at a moderate heart rate safe to do with FMD?
How does FMD cause dizziness or feeling off balance? What can be done? I have high bp, high cholesterol, and a very small aneryism in my brain at the vestubular Y.
Hi dr it’s a great answer thanks I have Pelvic congestion syndrome from 10 years I have 4 embolisation for my case I have chronic pain for 10 years and I know after my CT scan recently that I have PMD in both renal artery did this can cause chronic pain in Pelvic and did the embolisation can effect on artery Before 2 years I don’t have this problem thank you
Thank you so much; this was clear and helpful. I was diagnosed about 6 months ago with FMD in my carotids; it's true that often in the support groups, people seem to offer "one size fits all" advice, which doesn't make sense. Your video is in line with what my FMD specialist at Hopkins said. I appreciate that you made the video!
You are so welcome! I appreciate you took the time to comment. I wish you all the best.
Thank you so much! I was just diagnosed with FMD after experiencing dizziness, neck pain and tinnitus. Your video was helpful.
Glad it helped! I wish you best of health.
Excellent presentation! I had a SCAD this year followed by a diagnosis of FMD. I would be interested in your opinion on statins along with aspirin and BP meds as medications for SCAD/FMD. Thanks!
Thank you for taking the time to comment. I am sorry to hear about your SCAD. I hope we can get to making a video about medical therapy after SCAD. That would be a great resource.
I was recently diagnosed with FMD at age 27 and these are some questions that I've been thinking about. There are no FMD specialists in the region where I live. If you're able to provide input or add them to your next Q&A video, I'd greatly appreciate it!
What are the links between FMD and hormones, and should women with FMD be using hormonal birth control methods?
What are the risks for pregnant women with FMD?
What are the recommendations for the consumption of caffeine, alcohol, and cannabis for FMD patients?
What is the ideal blood pressure range for FMD patients?
Thank you for this video and for the work that you do!
Thank you for the support and for the extra questions. I can’t promise when a new video will come out, but when it does I will definitely try to incorporate your questions. In the meantime, please explore fmdsa.org to see if there’s a provider in your region.
This was super helpful because I was diagnosed 5 months ago. I’m so scared but your video helped me a lot! If you do another video, I’d love to hear your thoughts on HRT in menopause with FMD!! Thank you!!
Thank you for taking the time to comment and make a suggestion. I hope we can get to your topic soon!
I would also love to know your thoughts on HRT. I was recently diagnosed with FMD as a result of a dissection in the right carotid artery. I was on HRT during the dissection but have since stopped taking due to risks. I am curious to hear if any other HRT recommendations are available for women with FMD going through menopause.
That’s a hard one. There’s a theoretical connection between estrogen exposure and FMD. But it is likely not direct. So we don’t know specifically if HRT is problematic or not. So it becomes a decision that needs to be made while weighing the need and possible harm.
I also wonder about HRT and FMD.. I’ve been on HRT patch for 3 months and results from carotid artery found FMD and 50-69% distal stenosis 😢
While I cannot comment about your case, the question of hormones (estrogen) and FMD is still "open". While FMD is more common in women, we do not know of a specific mechanism for estrogen (or HRT) to cause or exacerbate FMD.
Thank you so much I was just diagnosed two weeks ago as I had mystery pains over the last three years I had stabbing pains in my abdomen my breast and my neck dizziness tinnitus the whole works however, I felt like someone chopped my head in half and I ended up in the emergency room and they did CAT scans. I am still undergoing a lot of testing, but the CAT scan showed beating on my carotid artery And I am a 52-year-old female
Thank you!!
I am sorry to hear about your symptoms. Thank you for sharing. I hope you find a solution for your issues.
Thanks doctor, very informative. You asked for other questions, so here is one: I was diagnosed with FMD two years ago. Why should I bother taking statins when I don't have high cholesterol and never have? There doesn't seem to be any real data from scientific studies on the effectiveness of statins or even beta blockers on FMD. Doctors seem to follow the standard arteriosclerosis treatment protocols.
Thank you for this question. While I can’t offer specific advice for you I am happy to say something general about statins in FMD. Like you said, they are not part of the standard FMD treatment. We offer statins to patients with either high levels of cholesterol, or those who had cardiac or vascular events or to people at high risk for such events. I hope that is helpful. I urge you to discuss with your team before making specific decisions.
Thank you so much for posting this video, this video has answered a lot of these questions
Glad it was helpful! Thanks for taking the time to comment.
Thanks for the presentation. Wife has been confirmed with it after some mild stroke symptoms and CT scan. We are implementing immediate lifestyle changes and waiting to see a doctor at the stroke clinic.
Sorry to hear about her condition. I wish her well.
@@Angiologist 10% of all women have it.
This was helpful. I was diagnosed about 6 montgs ago by CTA of the neck. Now unfortunately I was told I need to see a kidney Dr. The kidney Dr says I need a vascular Dr. The vascular Dr said there no way to definitely diagnois FMD and Im fine. I was then sent to Neurology for my headaches who now says this is not being taken care of you need to go back to vascular and I want you to see a Neurologist stroke specialist.
If you ask me no one around here knows enough and each dr just keeps passing me off to some other Dr.
This is unfortunately, a common problem. I would recommend finding a vascular MEDICINE doctor.
Excellent overview and great information for patients with FMD!
Thank you!
Thank you very much for this video. I wish I could have had the privilege of having this information back in 2004 when I lost my kidney due to FMD. I have been struggling with FMD since I was 20 years old. Lost one of my kidneys due to an aneurysm caused by FMD. When I was diagnosed not many vascular surgeons were aware of this condition. I am taking 11 pills to control my chronic renal hypertension. Unfortunately, my personal MD keeps adding more medications instead of referring me to a Physician who is familiar with FMD outside the healthcare organization where I belong. (Kaiser) Even though none of their vascular surgeons treat this condition. The side effects of all these medications have made my quality of life so miserable. Thank you again.
I am very sorry to hear about your journey with FMD. I believe there are some physicians at some Kaiser locations who do have expertise in FMD. I hope you can meet one of them. All the best.
Thank you so very much for this video Dr. Weinberg. I've been recently diagnosed (incidentally) with FMD of distal left internal carotid artery and a dissection and also a 6x2 mm pseudoaneurysm of left vertebral artery in neck with a "suggestion of a beaded appearance." I have never experienced any symptoms whatsoever. I saw an interventional radiologist as my first doctor appointment. He suggested 325 mg. of aspirin and recommended yearly scanning. In your video you recommend 81 mg. In addition, my nephrologist bumped up my BP meds also and ordered a renal arterial duplex ultrasound. Results are pending on that. I would appreciate your thoughts if you feel appropriate on commenting here. Thank you.
Unfortunately, I am unable to offer specific clinical advice. I am sorry. I would recommend that you go to fmdsa.org and find an FMD doctor in your area. All the best.
@@Angiologist Thank you. Great video and information. I hope that you continue to do more.
Thank you!
Excellent overview
Thank you random user for your kind words :)
Very helpful video. I had sudden onset, very high blood pressure in my late 30’s. In June 2018, at 59 years of age, I had a SCAD, AMI, that lead to a cardiac arrest. While in the hospital, it was discovered that I have FMD in my Internal Carotids, Renal Arteries, and Iliac Arteries. Currently, I have been found to have an Iliac Artery Dissection, and narrowing in the other Iliac Artery. I am my doctor’s first and only patient with FMD, and it is very difficult to find good information on my condition. I also have a recently found brain aneurysm, and do not know if it is FMD related. I have decided that most specialist doctors I have seen, are more focused on what they know about atherosclerosis, than how FMD acts upon a given artery. FMD is unique, and wonder if these doctors, whom most likely know little of FMD, understand how FMD affected arteries act on say vascular labs. With my current Iliac Dissection, I feel that the Vascular Surgeon is brushing me off, after all, my arteries are not plugged up with plaque. I really appreciated how you described in Question #8, how the flow pattern of FMD on ultrasound, is not the same as in atherosclerosis. Thank you for this video.
Thank you for sharing and for appreciating the video. I am sorry about all that you went through. Depending on where you live, there may be an FMD doctor in your area or close enough.
This is great. Thank you.
Glad you liked it!
Thank you so much for this! Very helpful.
Glad it was helpful!
I live in British Columbia. Canada and want to find a specialist that understandsand trwats FMD. I have not been formally diagnosed but have test results indicative of FMD and the internist is talking about it. Very difficult to look up specicically specialist for western Canada.
Check out this group: ccs.ca/canadian-society-of-vascular-medicine/
Great information.
Glad it was helpful!
Just diagnosed with FMD in my carotids, haven’t had other arteries checked yet. I am a runner for 25 years. I have run marathons in the past and now keep my running to half marathons and trail running. I am more apt to pace myself to go the distance than try to break speed records. I run my heart rate. When I feel it starting to elevate to an uncomfortable level I dial my speed back to keep the HR consistent aerobically. I also avoid running in hot sunny weather as it elevates my heart rate quickly. Is aerobic exercise/ running at a moderate heart rate safe to do with FMD?
There is not enough information to give solid recommendations about exercise with FMD. The guidelines basically say "use common sense".
How does FMD cause dizziness or feeling off balance? What can be done? I have high bp, high cholesterol, and a very small aneryism in my brain at the vestubular Y.
Thank you for the question. The mechanism is not always clear. But FMD patients do complain of dizziness often.
Hi dr it’s a great answer thanks
I have Pelvic congestion syndrome from 10 years I have 4 embolisation for my case I have chronic pain for 10 years and I know after my CT scan recently that I have PMD in both renal artery did this can cause chronic pain in Pelvic and did the embolisation can effect on artery
Before 2 years I don’t have this problem thank you
I am sorry to hear about your problems. I don't know why you are experiencing pelvic pain. Usually, FMD in the renal arteries does not cause pain.