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Saturday, November 19, 2011

FMD have you seen me?

Brain & Tina Sapp

Guest Blog: A unique perspective about the importance of vascular imaging from a Vascular Technologist and a husband of a FMD patient. 
By Brian Sapp, Lead Vascular Technologist and PACS Administrator at Piedmont Medical Center

Are you finding FMD at your facility? If you are not, chances are that you may not be looking for it. FMD or fibromuscular Dysplasia is a disease that effects primarily the renal arteries, carotid arteries, mesenteric, and iliac arteries in young adults.

 The disease process is most common in women who present with controlled or uncontrolled HTN, TIA, or CVA between the ages of 30-55. The mean age is 36. FMD is not an arteritis and has no known etiology, however it is believed to be triggered by hormones (women and age). FMD usually is left side dominant.

On ultrasound usually you will see laminar flow at the origin of the renal or internal carotid artery then abrupt bruit with increased diastolic velocities in the mid or distal renal/internal carotid artery. On arteriogram a string of beads is the classic sign of FMD. In severe cases the beading is seen on ultrasound. FMD is often overlooked in the carotid artery due to the lack of b-mode plaque visualization and sampling is not performed far enough distally to see the turbulence. Being aware of the patients history and age should key you in on FMD.

Three main things to let you know to look further are :

  • Young female with bruit.
  • On HTN medication.
  • Elevated diastolic velocities bilaterally without plaque formation.

All of these should point to the technologist to look as far distally as possible. FMD is treated by angioplasty and patients generally have very good outcomes. Dissection of the carotid artery and aneurysms are ramifications of undetected FMD.

Tina's story:

Eight years ago I started a job with the Vascular Institute of Georgia, a large vascular surgery practice in Atlanta.  Tina was the manager and lead technologist.  She had taken blood pressure medicine for a short period the year before during a personal time of stress.  Working with such a large group of technologists the subject came up one day, I of course asked to scan her renal arteries.  She stated that they had already been looked at earlier by another tech and that they were fine.

I don't take no for an answer and insisted to take a peek.  Her left renal artery had an unusual look to it had very laminar flow proximally and then took a sharp turn when her diaphragm was relaxed. Her velocities were elevated with her diaphragm relaxed and reduced when she took a breath in and the artery appeared to straighten.  I told her it was FMD she said it was a kink and that the velocities were still well under a 3.5 ratio. When Tina said it was due to a kink, well that was the end of it (if you have ever met her she is indestructible and tough as nails).

The story moves to 18 months later, I have moved to my current employer and we became involved.  Tina had been placed on Diovan and her BP was well controlled.  One evening we went to the local fair and the kids asked her to ride the scorpion, well she got stung.  Upon leaving the ride she looked gray, was sweating profusely and became very nauseated.  Needless to say she has never ridden another ride at the fair, thankfully she did survive.  I immediately asked to scan her renal arteries as we had a trip to Disney planned in a couple of months.  Her left renal artery had developed a full time bruit and the end diastolic velocity was very high, even though the systolic was only moderately high (borderline 3.5).  She had also developed an increased color bruit in the distal right renal artery.

At age 37 the diagnosis of FMD was made and confirmed under arteriogram, she had successful angioplasty and is currently being monitored every six months and is on Cozaar.  Tina fit all of the parameters as far as age, being of the female sex, having a bruit on the left renal artery.  However being a vascular tech herself, she didn't want to accept her condition initially because of her ability to control her blood pressure with one medication.  This is the most important facet to her story.  Anyone who is female and develops a need for blood pressure and fits the age group in my opinion should have a renal artery duplex. 

About Brian:  I have been performing Vascular Ultrasound for 15 years.  I am a very busy person and currently hold several hats. I am a full time employee of Piedmont Physician Group as the administrator of the radiology PACS system and Non-invasive vascular laboratory. I am a working manager, meaning I scan patients every day. I am also a consultant for both CareFusion and Registered Vascular Solutions Inc; a company I founded 5 years ago.  I am married to Tina Sapp who is the manager of Saint Josephs outpatient vascular lab in Atlanta Georgia and a recent graduate of the University of West Florida with a Masters in Health care Administration. Her laboratories produce approximately 14000 high quality studies a year. We have three children together ages 16, 13 and 8. We both are very passionate about vascular testing and vascular education.

Follow Brian:
Blog
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4mylegs.com

Tuesday, November 8, 2011

Experienced from both sides of the bed

The November 2011 Issue of Readers Digest reads in big, bold print  “50 Secrets Nurses Won’t Tell You”

Articles like this create fear and mistrust in the patient community.

The front of the article states “Doctors are clueless about what really happens in the beds, rooms and halls of our hospital” Really? In my experience physicians are very well aware of what is happening in the bed. I had just had a major vascular surgery in 2009, when I developed chest pain in the ICU.  Who was there at the side of my bed reading my EKG and ordering the Nitro Drip? The ICU nurse? No the Intensivist.  My nurse was amazing. She monitored my pain, adjusted the drip while monitoring my vital signs. It was a team effort.

The next time I am admitted to the hospital should I be suspicious of my vascular surgeon who held my hand and informed me how my surgery went? He drew pictures so I understood and patiently listened to me while I asked questions about my prognosis. What about the fact that the surgeon listened to my suggestions on what I thought could make my recovery successful. Together as a team we made decisions about my discharge. My surgery and all that accompanied it was a positive experience because participatory medicine was taking place.

The Readers Digest states that they “...went to the experts.” Now don’t get me wrong, I have been a Registered Nurse for almost 2 decades, and many nurses are exceptionally intelligent, and dedicated. But I disagree with the light Readers Digest put nurses in. We are part of the team, there are no experts. The doctor nurse relationship is not “them against us” like this article makes it out to be. I am member of The Society of Participatory Medicine who’s mission is to bring together e-patients and health care professionals. We can do better both as health care providers and patients, telling “secrets” is not the answer.

Personally I found a few of the "secrets" offensive and not true of the nursing profession. The article “50 Secrets Nurses Won’t Tell You” is a small representation of nurses, many who are professional and work with values and a code of ethics.
Whatever it takes to sell a magazine right?

I could go delve deeper into this article but I suggest you read the article judge for yourself, let me know your thoughts.

Kari Ulrich,  FMD e-patient, RN
Experienced from both sides of the bed

Getting ready for Surgery

Wednesday, November 2, 2011

Join FMDChat on Facebook For a Special Chat like no other!

We are doing something a little different in our patient community, and I wanted to share it with all of you.

FMDChat is holding a facebook chat, but instead of doctors telling patients about Fibromuscular Dysplasia (FMD), we are giving patients the opportunity to educate physicians what it is like living with FMD, what our challenges are in health care.

Please join us in our conversation, I hope this is the first of many more to come. I am grateful to the Dr. Sevilla and my husband, Dr. Ulrich for taking this leap of faith and making a difference in our patient community.

Thursday, November 10th from 7-7:30pm CST

Patient voices are an under-utilized resource.

FMDChat wants to raise awareness in the Family Practice Community. Join us and our special guests:

Dr. Mike Sevilla & Dr. Mike Ulrich


As we open lines of communication and educate physicians by communicating through the patient perspective.

This is an opportunity for patients to tell Family Practice Physicians what we need from them!
About our Guests:

Mike Sevilla, MD (@DrMikeSevilla on Twitter) - Family Physician and Social Media Enthusiast since 2005. Topics of his blog and podcast include commentary on current medicine and social media news. To learn more about Dr. Sevilla visit: http://www.familymedicinerocks.com/

Mike Sevilla, MD



Mike Ulrich, MD
- Family Physician for Mayo Clinic Health Systems in Albert Lea in Minnesota. Dr. Ulrich is the Division Chair for Family Practice and Medical Director of Emergency Medicine for Mayo Health Systems in Albert Lea, Minnesota. He serves on the Medical Advisory Board for The Joe Niekro Foundation.  He is also husband to FMD patient Kari Ulrich and has a unique perspective on coping with FMD.
Mike Ulrich, MD


Chat Moderated By: Sarah E. Kucharski and Kari Ulrich

Monday, October 31, 2011

Classifying Fibromuscular Dyplasia

There is a group of patients and advocates who want to understand the how FMD is classified in every day terms. Please not this is a work in progress and I would love feedback if there is any aspect that could be explained more easily. Thanks- Kari

First lets look at the layers of the artery, this will help you understand the classification system of FMD. As you can see there are several layers that make up an artery. (Figure 1)

Figure 1





When we classify FMD we are concerned with the following main layers: (Figure 2)
Tunica means layer of tissue.


Figure 2



1. Tunica Adventitia (outer layer)
2. Tunica Media (middle layer)
3. Tunica Intima (inner layer)



There are several types of FMD (fibroplasia) and if we include rarer types there are a total 5 pathological classifications of FMD (fibroplasia).  I have put in bold ones that we hear about most often. Please remember you can have more than one type and that many types can only be confirmed by a pathology specimen.


1. Medial Fibroplasia: Charaterized by its classic “string of beads” appearance which represents the most common type of FMD. Frequency 75-80% Most Common

2. Perimedial Fibroplasia: beads are smaller in appearance Frequency 10-15%

3. Media hyperlasia- smooth stenosis (similar in appearance to intimal) Frequency 1-2%

4. Intimal Fibroplasia: Most common in children, and appears as a concentric band or a long smooth narrowing. Frequency: less than 10%

5. Adventitia Fibroplasia: Dense fibrous tissue that may extend into surrounding tissue (very rare) Frequency: less than 1 %


Resources:
Journal Compilation, World Stroke Organization International Journal of Stroke Vol 5, August 2010, 296-305
Figure 1 Photo Source: http://www.teachpe.com/anatomy/arteries.php
Figure 2 Photo source: http://blog.lib.umn.edu/trite001/studyinghumananatomyandphysiology/2008/02/name_the_layers_of_this_artery.html

Thursday, October 27, 2011

How Scarey is FMD?

 A Halloween montage about FMD by survivor Carol Garrison



To read more about Carol's Story CLICK HERE

Tuesday, October 25, 2011

5 Influential Patients in Social Media

Kelly Young, Kari Ulrich,Virna Elly at Mayo Clinic Social Media Summit 2011
There is a lot of talk about influential people in health care, many are lists of physicians, health care executives and organizations.  There is another group of that cannot be forgotten. Lets lead a discussion about influential patients. Here are some e-patients that have been most influential to me. Lets add on to this list! Let me know what e-patients are influencing you and why? What qualities makes a patient influential?

Kelly Young  Fighting Rheumatoid Arthritis with humor, wisdom and strength.

Virna Elly  Fighting Diabetes with courage, intelligence and squirrels.

Laura Haywood-Cory  Fighting Heart Disease with compassion, empathy and determination.

Melissa Travis Fighting Lupus with grace, education and whit.

Sarah E. Kucharski  Fighting Fibromuscular Dysplasia with honesty, integrity and wombats.

Monday, October 24, 2011

Sunday, October 23, 2011

Participatory Medicine

During the Mayo Clinic Social Media Residency I had the opportunity to ask Mike Sevilla, MD what he thinks about Participatory Medicine. Here is what he had to say:



Thank you Dr. Sevilla!

I highly recommend every health care provider read:
Participatory Health Care: White Pages by Tom Ferguson, MD and the e-Patient Scholars

Thursday, October 20, 2011

Social Media in Health Care is Human.

What I have learned from Mayo’s Social Media Summit

10:35 pm and I am just getting started on my homework assignment. I am happily exhausted from this past week. I know I have done something worthwhile because I have gone beyond my limit of comfort physically, emotionally and spiritually.

I came to the summit as a patient scholarship recipient. I was representing a group of remarkable people with a rare disease. This summit was not about me, but about every patient that has touched my life with his or her experience. I needed to learn how to communicate on behalf of those who cannot.

The summit has taught me more than the power of communication. I have learned that to me the definition of social media in health care is more than written word.  It is the passion of the human spirit to make a positive a productive difference. Social Media in Health Care is Human.

Among the twitter celebrities I found wisdom, humility, values and integrity. I found role models that will shape my communication in a way no other has.  I will continue my journey in social media with the ethics of @SeattleMamaDoc and @MeredithGould.  My words and language will contain integrity thanks to the wisdom of @westr, @subatomicdoc and @burgessct. I will always remember the impact I am making and the ROI of my engagement through the humor of @chrisboyer I will continue advocating with integrity thanks to the influence of @rawarrior, @EdBennett and @ePatientDave.


I will never underestimate the knowledge of an e-patient and those who have traveled a path similar to mine. Virna Elly, Jill Plevinsky, Jim Pantelas and Corey Daniel King your passion will always live in my heart, we are in this together and I know our accomplishments will be many because of the connections we have made.

Words cannot express my gratefulness to Mayo Clinic, Ragan Communications, the Mayo Clinic Social Advisory Board, Lee Aase and his team for this life changing opportunity. I look forward to growing old with you all, as the Cowan’s have shown us age and wisdom is a wonderful thing. 


Sunday, August 28, 2011

E-Patient Communities the Good, the Bad and the Ugly


In the past 5 years I have learned a lot from the available on-line communities… the good, the bad and the ugly. No, I am not talking Clint Eastwood, although he may make an excellent moderator to any online support group.


Lets talk about the good of E- patient communities. They allow patients to connect with others and share their experiences. Communities give us the ability to open up dialogue for education. Patients learn complex medical jargon and treatment options of a given disease. They give support to those who need a listening ear. There are so many positive things about participating in online communities, but with the positives come some negatives. Online communities develop into trusting families. But what happens when there is a breach in the community?

Lets talk about the bad and the ugly of E- Patient Communities. What happens when the community you once trusted with your inner most thoughts and feelings becomes violated? When E-Patients find an online community they usually are at their most vulnerable point. Patients are scared and seeking help from their peers. They are putting their trust into sources that may be unknown. Transparency is so important in the social media world. Many online groups such as Yahoo or Goggle groups may be moderated, but who is behind the moderation? Here are some important questions to ask before joining a group.


  • Is the person moderating transparent about who they are?

  • What is their role as a moderator?

  • Who are the patients in the group?

  • Are these patients transparent?


I have seen firsthand how written words can lead to miscommunication and misunderstanding. In the end of these verbal wars it is the patient that suffers. Misguided advice can harm.

When you are sharing so much of your medical history and your personal experience it is understandable that you may want to stay anonymous. But when you are anonymous you are not a credible source. Do not be afraid of being credible. Being a credible e-patient does not mean you are an expert- but it does give your words integrity. However, think carefully about the medical information you divulge, as it becomes public knowledge once on the net.

E-patient communities have an obligation to be safe and transparent.  Over the years I have turned Mayo’s Community Page and most currently Smart Patients. I found them to be safe and reliable resources. It is important for patients to understand how online communities work. I would suggest hanging out and listening and find out if that community is right for you. Online Communities are like families, you laugh and cry together and yes sometimes bicker. They can be a great resource for patients. Don’t be afraid to ask questions. Participate and be an active listener. 





Updated 1/8/2014

Monday, August 22, 2011

Selflessness in Social Media


To be selfless is having little or no concern for oneself, especially with regard to fame, position, money, etc.; unselfish. (Dictionary.com)

I wake up this beautiful Monday morning discussing selflessness with my husband over a cup coffee. It is rare morning that he does not have to rush into the hospital. We both have spent this past Sunday with an incredible woman that defines this word.  I believe selflessness is contagious because it has spilled over to many lives influenced by Natalie Niekro.  Natalie has devoted her life to raising money for brain aneurysm research. She does not seek fame, nor does she take a paycheck for the incredible work she does with the Joe Niekro Foundation. Her devotion is purely to serve others that face incredible challenges in their life.

During one of many coffee refills, I flip on my laptop to see what is happening with the social media world. Again I find another person that defines the word. Robert W. West, Jr, PhD . We have been discussing the role of genetics in chronic illness. He is engaged with what I have to say about Fibromuscular Dysplasia (FMD). We discuss the lack of genetic information available to those with FMD and the medical community. What amazes me is that he took the time to listen, understand and explain.  Dr. West did not receive a consultation fee, nor did he gain any publicity (this was a DM conversation).  

Both Natalie Niekro and Dr. West are both examples of why social media is important in health care. Health Care in Social Media should serve others selflessly. HCSM is not about a paycheck, fame or your KLOUT score.  It is a powerful tool and when used in a positive way can impact millions of lives

 

Friday, August 19, 2011

Brain Aneurysm Awareness

Please join The Joe Niekro Foundation this Sunday for Brain Aneurysm Awareness Day when the Minnesota Twins host the New York Yankees at Target field.



Sunday, August 21, 2011
Twins vs Yankees
1:10 PM Game

Join us from 10am- 10:45 for a autograph session with Baseball Legends Tony Oliva, Dan Gladden and Tim Laudner. For a minimum $20 donation, you will receive a Wanna Get Lucky? shirt autographed by these former Twins Alums.  A portion of the evening's proceeds will benefit the Mayo Clinic. Session to be held at the Majestic Team Store, outside Gate 29.

Can’t make it to the game? No Problem!
You can still donate by texting!

Text to the word STRIKEOUT to 20222 to make a $10 donation
Donation amount will be added to your monthly cell phone bill

www.joeniekrofoundation.org

Wednesday, August 17, 2011

Two FMD heads are better than one!

Sarah  Kucharski and Kari Ulrich met each other on the Mayo Clinic Community Website. They discovered they have several things in common.

 1. They both have been diagnosed with Fibromuscular Dysplasia, a rare vascular disease.

2. They both share of love of social media and have applied for a scholarship to be apart of Mayo's Social Media Summit.


"Mayo Clinic is sponsoring an essay contest to award five scholarships for patients and caregivers to attend our Third Annual Health Care Social Media Summit and related events during the week of Oct. 17, 2011.

Voting on the community site continues until midnight Aug. 17, at which point Mayo's panel of judges will select the five scholarship recipients from among 15 finalists."

TODAY is the last day to vote

We are asking other FMD patients, their family and friends to take a moment to read the essays submitted. Log in and vote/comment. Lets make our voices heard!

Please click on links below to read submitted essays:

http://connect.mayoclinic.org/discussions/358-social-media-summit-scholarship-essay-kari-ulrich

http://connect.mayoclinic.org/discussions/336-social-media-summit-scholarship-essay-sarah-e-kucharski



Sunday, August 14, 2011

Fear of Writing

Why do I fear writing? I have struggled for years with my writing skills, frustrated that my thoughts come into my head faster than I can get them on paper. I end up with  incomplete thoughts expressed through run on sentences. I have books piled on my bedside table from a chewed up Merck Manual (Thanks to my Old English Sheepdog) to several books that educate on how to write. They sit there and mock me.


This fear of mine has recently resurfaced as I was writing my essay for the Mayo Clinic Social Media Summit Scholarship.  I think back to my high school days and I remember it like it was yesterday. I was a junior at the time, in a class for those who struggled with grammar. Our English teacher must have been having a bad day and decided to take it out on her class of struggling students.  Maybe our class as a whole did not do well on certain assignment, or test. Her frustration that day has impacted me my whole life. Her words stung, "There is not one person in this class who will ever be accepted to college, your writing stinks... you may as well find jobs that do not require a college degree". Those words had crushed many aspiring souls that day.  I believed her for a long time so did my other classmates. We would talk about it in the hallways, ashamed that we were not smart enough.

Thankfully many of us did not let that stop us from pursuing what we wanted in life. My writing fear continued to be with me through my college years. I did, as many others in that English class, succeeded in making it through college. I received a AAS degree in graphic design then continued on to get an AAS in Nursing.

Writing is becoming a large part of my life. It may come in a scribble of notes, without proper punctuation but I am writing. Writing is a therapy for many with illness. It helps us make sense of what is happening in our lives. So I will continue to conquer my fear of nouns, verbs and adjectives by expressing my thoughts through written words. I will open the pages of the self help books for writers and take to heart the wisdom they have to offer. I will be open to constructive criticism and embrace the opportunity to learn from my mistakes.


My Essay: Social Media Summit Scholarship Essay – Kari Ulrich
http://connect.mayoclinic.org/discussions/358-social-media-summit-scholarship-essay-kari-ulrich



Tuesday, June 28, 2011

Help The Joe Niekro Foundation and the Minnesota Twins raise money for Brain Aneurysm Research at Mayo Clinic!



Sunday, August 21, 2011
Twins vs Yankees
1:10 PM Game
For Ticket Information CLICK HERE

Can’t make it to the game? No Problem! You can still donate by texting!
Text to the word STRIKEOUT to 20222 to make a $10 donation
Donation amount will be added to your monthly cell phone bill



Friday, June 17, 2011

100 Days of Giving: Aneurysms, Fibromuscular Dysplasia & Fuzzy Friends

There is a great website that allows you to create your own foundation and give to your favorite charities. GiveBack tracks all your charity donations for tax purposes. I do find that at the end of the year I am shuffling through drawers etc trying to find tax receipts- (Yes, it would be easy to keep them in one file- but when you have some receipts coming through the mail, some on line, some in person- it is much easier to stuff them in the junk drawer and deal with them later) What I really like about this program is that is allows you to give by shopping on line, a portion of the sales goes to your foundation and you decide where and how the money is used. Take a look and see if GiveBack is right for you. Join me in the 100 days of giving- it is easy to do. Click on link below and get started!
https://www.giveback.org/onehundreddays.aspx?refid=38535

Today I gave to Mayo Clinic for Fibromuscular Dysplasia Research, Education and Support. Give to your local hospitals, give in your community.

My 100 days of giving charities have included:

The Joe Niekro Foundation for Brain Aneurysm Research
Mount Sinai Medical Center for Fibromuscular Dysplasia Education
Vascular Disease Foundation
Society of Vascular Medicine

and my local favorite: The Freeborn County Humane Society
My Beagle- Basset Odie- adopted from the Freeborn County Humane Society

Friday, June 3, 2011

The Joe Niekro Foundation is participatin in Vivint Project giving away $1,250,000 to charities.

Vivint is giving away $1.25 Million to charities. Help us win!



The Joe Niekro Foundation is participating in this project. Vivint is giving away $1,250,000 to charities.


We need to get at least a 1,000 votes BEFORE June 11 at midnight to be eligible. VOTE ONCE A DAY up to and including June 11 by first following these 4 simple steps below now and then step 5 everyday after;

(1) Click On the Orange Box  above "Endorse Now"

AND then click on the blue facebook "login" icon located in the upper right of the screen or middle left of the screen,

(2) Click the blue "Allow" button near the lower right of the new screen that popped up,

(3) Click on the small blue "Like" button on the next screen and Finally,

(4) Scroll to the bottom of the next pop-up screen and click on the orange "Endorse" button.

So its as easy as click on the link above, "login" ,"Allow","Like" and "Endorse."

(5) After you do 1 through 4, just return to your Facebook homepage everyday after up to and including June 11 and click on the link on your wall and endorse...it will take 10 seconds.

Please help us fund money for brain aneurysm research!

Please invite all you Facebook Friends to this event so they too can vote and help us. This is a Facebook only vote.

Wednesday, June 1, 2011

Fibromuscular dysplasia of bilateral Iliacs with aneurysm & thrombosis

Source: www.endovascular.org




Male, with 41 years old, healthy, claudicating on exertion since 60 days, no right femoral pulse. He is a marathon’s athlete. There is a dissection on RCI, thrombosis at origin of REI, and LEI with various aneurysms. My diagnosis is fibromuscular dysplasia with aneurysm and thrombosis. There are few cases in literature: Surg Today. 2003;33(8):639-41. Isolated Iliac Artery Aneurysm Caused by Fibromuscular Dysplasia: Report of a Case J Vasc Surg 2004;40:1032-6.) Spontaneous dissection and rupture of common iliac artery in a patient with fibromuscular dysplasia: A case report and review of the literature on iliac artery dissections secondary to fibromuscular dysplasia I think that is a challenge case, because his age, bilateral disease, sub-occlusion of RII, occlusion of REI and dissection on RCI.

Contributing Member:
Dino Colli, MD
Vascular Surgery
Sao Paulo

Wednesday, May 18, 2011

Fibromuscular Dysplasia Online Support Through the Vascular Disease Foundation

Midwest Women's Vascular Advocates is excited to announce a new online support group for those affected by Fibromuscular Dysplasia.  The Vascular Disease Foundation was kind  enough to set up this online community through Inspire.  This is a safe place for you, your family and friends to support and learn from each other. Please come share your experiences.

Click on link below to join:
http://www.inspire.com/groups/vascular-disease-foundation/topics/fibromuscular-dysplasia-fmd/


We hope you pass this along!

Warmest Regards,

Jennifer Moreen & Kari Ulrich RN
Founders- Midwest Women's Vascular Advocates
www.mwva.org


For more information on the Vascular Disease Foundation:

Vascular Disease Foundation – www.vdf.org
P.A.D. Coalition - www.PADCoalition.org
Venous Disease Coalition - www.VenousDiseaseCoalition.org


Great things happening in Paris regarding Fibromuscular Dysplasia!

Reasearch Objectives: Including Fibromuscular Dysplasia

 " We are now testing the screening value of the triple signal for the positive diagnosis of fibromuscular dysplasia, by comparison with tomodensitometry in a prospective trial and we participate in the constitution of a large national registry of patients with fibromuscular dysplasia : the PROFILE Study is a multicenter cohort study assessing the vascular, renal and genetic aspects of PROgression in FIbromuscular Lesions." - 
Pathophysiology and Pharmacology od Large Arteries

Publications

2010

Le PARCC


(Paris-Centre de recherche Cardiovasculaire)



Take a moment to review this link: 




Tuesday, May 17, 2011

Great FMD webchat from Cleveland Clinic!

Cleveland_Clinic_Host: Today's Online Health Chat "Fibromuscular Dysplasia" with Dr. Heather Gornik and Pam Mace will begin in 5 minutes at 12:00pm(EST). Please 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. 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
Pam_Mace_RN: Welcome everyone - it is nice to be here today.
Dr__Heather_Gornik: Thanks for joining us today.
SnowWhite: The doctors told me to stay at home for 6 weeks after my carotid arteries dissected. Since 2 weeks I have been working part-time and my doctor and I are currently trying to find the right time to restart working full time. Do you have any experience, how long dissected patients should rest before restarting their usual job with full power? I am working in an office, spending my time in front of a computer – no heavy load to carry etc…
Dr__Heather_Gornik: The time to return to work for a patient with a dissection depends on a number of factors, including the extent of the dissection, your neurological symptoms (such as whether or not you had a stroke), and also if you are having severe pain and needing pain medications, so each patient is different.
SnowWhite: Do you know any experts or clinics in Germany or Europe that are focusing on FMD and that you could recommend for further treatment?
Dr__Heather_Gornik: Dear SnowWhite. These are really terrific questions. I am afraid I do not know of any specialists in Germany who are focused on FMD, but I know there is a very active group in France at the Paris Descartes University who is focused on this disorder (led by Dr. Pierre-Francois Plouin). I wish you the best of luck.
Pam_Mace_RN: I do not know of any doctors or clinics. I would be happy to try to introduce you to other patients in Europe to see who their doctors are.
Pam_Mace_RN: There are several doctors in Europe participating in research and Dr. Olin and I have been in contact with them.
Pam_Mace_RN: I have reached out for them to find out who sees patients clinically but have not received a response yet.
SnowWhite: Could you please give me any advice concerning the kind of checks and the time intervals I should perform in future? How often do I have to have a look at my carotid arteries? Do I need MRI every time or is ultrasound sufficient? Should I permanently check other organs as well (kidneys, heart)?
Dr__Heather_Gornik: The frequency of surveillance studies to reassess carotid FMD also depends on a number of things, such as whether you have had a dissection or have a pseudoaneurysm or aneurysm. In general, it is reasonable for carotid FMD patients to have a repeat imaging test every 6 to 12 months once their symptoms are stable. The type of test MRI vs. ultrasound depends on the local experience of the imaging faciliteis in your area with FMD as well as whether or not your disease can be imaged by the ultrasound probe.
Dr__Heather_Gornik: In terms of assessing other vessels for a patient with carotid FMD, it would be reasonable to check for renal FMD in any patient with carotid FMD. I do not routinely check any cardiac tests. I may recommend assessment of the arteries to the legs if a patient has bruits in the legs, abnormal pulses, or pains in the legs with walking.
Dietz08: My son Mason is 6 mos old and has been diagnosed with FMD. He underwent surgery for a "coarctation of the aorta when he was 10 days old. He appears to be thriving and on track as far as growth/strength development, yet doctors we have seen on the west coast are not familiar with FMD and have pretty much thrown their hands up in the air as far as recommended treatment due to his condition and age. We are desperately trying to have him seen by experts at the Cleveland clinic as they are our only hope. What if anything can be done to treat Mason's FMD at such an early age. I understand that you would need to actually see him to diagnose his condition but generally speaking what type of restrictions would FMD have on his ability to live a normal life. Thank you for your time and we hope to see you in person in the near future. respectfully submitted, Danielle and Ryan Gussie
Dr__Heather_Gornik: Dear Danielle and Ryan. We would be pleased to arrange for a multidisciplinary care team here to evaluate your son. To clarify, I am not a pediatrician, but I am occasionally asked to provide my input on the care of a child with FMD as director of the FMD program. We would need to be sure that your son is evaluated by a team of pediatric experts who are familiar with FMD. Each patient with FMD, including each child with FMD, is different. I will say that pediatric FMD is a very different variant of the condition that adult type FMD. Narrowings in arteries are more common than tears and the lesions are generally not the sting of beads type. Involvement of the aorta is unncomon in FMD, but has been reported in children.
Pam_Mace_RN: Dear Danielle I can introduce you to other parents of children with FMD. I think this would be a great resource for you. We have one parent who responds to most of our parents who I could introduce you to. You can contact me at pam.mace@fmdsa.org .
SnowWhite: Somewhere I heard about the possibility of developing aneurisms when your carotid arteries were affected. How can I prevent such implications?
Dr__Heather_Gornik: There is a small risk (probably <15%) of a patient with carotid FMD having a brain aneurysm. These are aneurysms that have not "just developed", but have probably been present for quite some time. Because of this risk, we recommend that all of our carotid FMD patients have an imaging study of the arteries inside the brain, either a CTA or an MRA.
SnowWhite: What kind of sports can somebody suffering from FMD still perform? My doctors told me that a new dissection could occur when jumping. Therefore I do not seem to have many choices except swimming and walking…What are your experiences concerning excercising with FMD at the carotid arteries?
Dr__Heather_Gornik: We don't know for sure or have any extensive scientific evidence on the risk of certain sports for FMD patients. The concerns it that extreme activities and also sudden, jerking, or stop and go motions of the neck may predispose to dissection. This is based on some case reports in the medical literature and experiences of a few patients. In general, for my carotid FMD patients, I recommend against: weight lifting or weight training (puts stress on arteries), contact sports (rugby, American football), sky diving, scuba diving, down-hill skiing unless truly expert. In general, we also recommend against roller coaster or thrill rides at the amusement park, again because of the "jerking" motions of the head.
Dr__Heather_Gornik: That being said, gentle aerobic exercise, walking, cycling, jogging and yoga and pilates are fine for most FMD patients.
Dr__Heather_Gornik: As always with FMD, each patient is unique, so please consult with your doctor before beginning an exercise program.
biggieroy: Is it common for FMD patients to have other congenital/vascular anomalies? I was diagnosed with FMD 6 years ago, as well as with a venous angioma, 2 cavernous angiomas, evidence of prior stroke and TIA's (all brain anomolies) as well as a PFO and congenital mitral valve prolapse and hypercoagability. The current neurologist I am seeing has admitted he really does not know how to treat me (my original neurologist moved away. Is there a syndrome that explains these numerous anomolies and is this a common occurrence (numerous anomolies associated with FMD?)
Dr__Heather_Gornik: Dear Biggieroy. Yes, we do see some overlap with FMD and other congenital abnormalities, but some of the things you mention may not be directly related to FMD. As always, it is key that you be evaluated by someone who is familiar with FMD. It may also be helpful in your case to image the aorta to be sure there is no aortic pathologies.
Pam_Mace_RN: I agree. I am familiar with other FMD patients who have a history of PFO and MVP. But, to date there has been no direct correlation with FMD, if any.
Zimbabe: I am sorry I missed the conference this year, I would like to know the symptoms of the Coronary FMD?? I have FMD in my Ext Iliacs, Carotid, and Renals. And now have to take Metoprolol for 2 different arrhythmias.... my sence is that its all connected, but my Cardiologist is not sure.
Dr__Heather_Gornik: Dear Zimbabe. Dr. Christopher Buller gave a terrific talk. He reported on a group of patients with heart attack who were found to have tears in the coronary arteries and FMD lesion in the coronary arteries and also other vessels. He is continuing his research in this area. A few key points of his talk were that the primary presentation was heart attack and not chronic chest pain or palpitations. He also did not recommend screening coronary tests for FMD patients. He also shared that the best mangement of coronary FMD seems to be a conservative one. So stay tuned for more data in this arena. I will say that we follow about 200 FMD patients, and only a small number (less than 10)have had coronary issues. Stay tuned for more data from Dr. Buller.
Pam_Mace_RN: Dr. Buller is interested in collaborating with FMDSA.
Pam_Mace_RN: At the meeting, Dr. Buller's talk was very well received among the patients. There were only a few patients who attended that had coronary FMD.
tubs: Good Day. I am a 44 year old female diagnosed with dilated cardiomyopathy and FMD of the right renal artery along with hypertension. I had a right renal angioplasty May 2009. I am currently taking coreg 12.5mg twice a day, spironolactone12.5 mg once per day, baby asa, multivitamin. Are these drugs the best choices for me? I also had a annual physical exam with my family practice doctor and she was not sure what type of follow up I should have with my FMD. Also I have 9 children. 6 boys and 3 girls. I am wondering if I need to do anything with them or have them checked for FMD? Also I had my carotids scanned and they were ok. I experience alot of headaches and for about six months lip and tongue numbness, intermittent. My carotid scan was May of 2009. Should I have that reexamined? I had an appointment at your facility but my insurance will not cover it. If you think I need to come there I will.
Dr__Heather_Gornik: Dear Tubs: We generally recommend an Ace inhibitor or an Angiotensin Receptor Blocker for our FMD patients, and you may want to ask your cardiologist about this. We would recommend regular blood pressure checks and periodic blood tests of renal function and an ultrasound of your kidney arteries every 6-12 months after an angioplasty.
Dr__Heather_Gornik: As for your kids, most important to have them screened for high blood pressure by their pediatrician (and the normal for each child is based on their age, sex, and height not the same 140/90 we use for all adults). If they have high blood pressure at a young age, then would be appropriate to test for FMD, but the very good news is that FMD generally does not run in families and in prior studies <15% of family members of affected FMD patients have FMD, so odds are you kids will not have this disorder. Good luck with your 9 kids… busy lady!
Pam_Mace_RN: If you are having persistent neurological symptoms, you may need reassessment. I might suggest that you see a neurologist since you are concerned about your carotid arteries and symptoms.
LRussell: Is there any new information since the last chat regarding correlation with FMD & MALS (or celiac artery compression)?
Dr__Heather_Gornik: One of my fellows, Dr. Keith Swanson, has just completed a project looking at this issue. In our initial analysis, it did not seem that MALC was more common in FMD patients compared to patients who have other types of vascular disease. But - stay tuned for more data. Keith has just returned to North Dakota but he plans on writing up the project soon. I will tell him you are waiting on the data!
LRussell: Could the Registry use samples from people living with FMDers to rule out/rule in environmental factors?
Dr__Heather_Gornik: Dear LRussell, we need to clarify one thing about your question. There are two major research projects ongoing in collaboration with FMDSA, One is the patient registry that is a questionnaire about FMD patients, their medical history, symptoms and outcomes.
Dr__Heather_Gornik: The second project that I am working on involves a blood sample collection for a bio-repository. This is a project being done at Cleveland Clinic, Mayo Clinic and with a collection at the FMDSA meeting.
Dr__Heather_Gornik: To clarify the registry does not involve a blood test. I think it is a neat idea to collect samples from unaffected people close to FMD patients and we are collecting samples from family members for the bio-repository.
Pam_Mace_RN: At this time we have not looked into the possible environmental involvement and how it may affect FMD.
Zimbabe: Thank you so much for your time
Pam_Mace_RN: Thank you for comment.
Sharon: I was diagnosed in "94 with FMD of both carotids. 70-80%. I am asymptomatic but have high blood pressure that is being treated. Am I safe to exercise with the FMD under these conditions? I am 62 years old.
Dr__Heather_Gornik: Dear Sharon, first of all the fact that you are without symptoms is important and terrific. I want to make sure that you know that the % stenosis categories that are put on an ultrasound report may not be entirely accurate for FMD patients - they are more designed for plaque blocking the carotid arteries.
Dr__Heather_Gornik: As for exercise, please see my answer to snow white's questions above. Gentle aerobic exercise, walking, cycling, swimming is fine in most cases as long as your blood pressure is well controlled.
Cleveland_Clinic_Host: For those just joining, we are chatting with Dr. Gornik and Pam Mace, who are taking your questions about 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'
Pam_Mace_RN: I agree with Dr. Gornik's answer. We have many members who still exercise.
Stephanie: Hi Dr. Gornik and Pam, I missed the FMD conference this year... are there some highlights that you can share?
Pam_Mace_RN: We have added some highlights on facebook. The conference was very successful. It was our largest yet. Here is a direct link - http://www.facebook.com/profile.php?id=100000480041602
Dr__Heather_Gornik: Hi Stephanie. I thought the conference was awesome and congratulate Pam Mace and her team for organizing it. For me, the highlights were Dr. Olin's review of the initial data from the FMD registry presented at the ACC meeting and the talks on neuro-intervention and coronary FMD.
LRussell: Are there any particular medications you would (generally speaking) recommend for patient w/Carotid FMD and uncontrolled headaches? We feel like we've tried everything, even nerve blocks for suspected occipital neuralgia
Dr__Heather_Gornik: At this point, I would be sure your neuro-imaging is up to date and that you don't have any carotid dissection or pseudo aneurysm or brain aneurysm.
Dr__Heather_Gornik: I have been working closely our neurology group and our multi-disciplinary headache program for patients such as yourself with severe headaches.
Tricia: What is the most effective way to test for FMD in the coronary artery? I have FMD in the right renal artery, I was just diagnosed in February, and shortly after that had my first angioplasty. My renal arteries have again narrowed and I am scheduled for another angio next week. I have been having shortness of breath. I just read on line that an angiogram is not the most accurate way to detect blockage or whatever may be going on.
Dr__Heather_Gornik: Dear Tricia - I know there is a lot of buzz about coronary FMD after Dr. Buller's talk.  But, most patients with renal FMD are not known to have coronary involvement. If you are truly having exertional shortness of breath, I do think a thorough evaluation by a cardiologist is recommended. He or she may start with a more functional test such as a stress echocardiogram. I am not routinely looking for coronary FMD in my renal, carotid or multivessel FMD patients.
tubs: thankyou for your time. I also weight lift without any symptoms or problems is that ok?
Dr__Heather_Gornik: Dear tubs, sorry - but I would strongly advise against weight training for patients with significant FMD. Resistence bands or very light weights are fine - but please no bench presses or squats or hard core weights training.
Pam_Mace_RN: I always recommend checking with your doctor who is familiar with your specific FMD - who knows the arteries affected and severity of disease
SnowWhite: Are there any difficulties in travelling by airplane? Do you usually recommend to avoid flying when a thrombosis occurred in a carotid artery?
Dr__Heather_Gornik: I see no reason why an FMD patient who is feeling well and clinically stable cannot travel by airplane. Even patients who previously had a carotid dissection or TIA or stroke can be a passenger on a plane, as long as they are compliant with their medications and clinically stable to travel from their physicians' perspectives.
rkm1948: Dear Pam and Dr. Gornick, First I'd like to thank you for a wonderful and very informative weekend in Cleveland! My grandson, Hayden, who is 13 has renal, carotid, vertebral, middle cerebral, subclavian and other cranial arteries with FMD. We have an appt with you (Dr. Gornick) at the FMD clinic the end of June. Should he be seen by the multidisciplinary pediatric team while there? Also, I am concerned about Middle School PE. Should he be playing basketball, jogging a mile, things like that? Thank you. Rosann
Dr__Heather_Gornik: Dear Rosann - all good questions and yes - your grandson would be seen by pediatric subspecialists as well as myself. My nurse Kathy Petrarca, who you may have met at the conference, will be in touch with you within the next few weeks to plan your grandchild's visit.
Dr__Heather_Gornik: As for exercise and PE class - that will be on our list of topics to address when Hayden is seen.
Sharon: How do I get on the patient registry with the questionnaire about FMD patients?
Pam_Mace_RN: To participate in the patient registry, you have to be seen at one of the participating centers. They are listed on the FMDSA website. http://www.fmdsa.org/
Dr__Heather_Gornik: We offer all the patients who come to the FMD clinic the opportunity to participate in the FMD registry if they so choose.
tubs: Do you know of any specialists in the upper peninsula of michigan who work with fmd patients?
Pam_Mace_RN: A lot of patients who live in upper Michigan go to Mayo Clinic or University of Michigan.
Dr__Heather_Gornik: Of course we see patients from all over the world with FMD.
Ghennet: Dear Dr. Gornik, first of all thank you so much for your answers in December 2010.It helped me moraly a lot to be in contact with someone who deals with fmd.Here in Germany we still are the only ones and the doctor of my now 7 year old daughter, who has taken care of her the last year very well (and still is), is overchallenged now.She had an MRT done a few wekks ago and they found, that besides her already existing affected renal arterie, she has now slight changes in her brain arteries.Not only one spot, but some.I need to know, what can we do to prevent more changing/narrowing?Any sports she should avoid? Traveling by airplane?Food?
Dr__Heather_Gornik: Dear Ghennet. Thanks for logging in again today. I would first of all be certain that these were really new narrowings --- sometimes in FMD blockages have been present for some time, but because an imaging test was not previously done they were not identified. Please see my answer to SnowWhite regarding sports. This can be particularly challenging in children, but we would recommend against contact sports in general. Her specific exercise restrictions would also highly depend on how well her blood pressure is controlled. For children with FMD, some good news is that tears of arteries (dissection) seems to be less common, though problems with narrowing can be more significant.
FMDrenal55: I am wondering what the chances of acquiring FMD in other arteries is if I have renal FMD now
Dr__Heather_Gornik: Dear FMDrenal - I am glad you asked that question. It is quite possible that a patient with renal FMD has FMD in another vascular bed, but it is not really acquiring new FMD but a matter of finding the FMD that is already there.
Dr__Heather_Gornik: A large percentage of our patients have FMD in more than one spot.
Dr__Heather_Gornik: For a patient with renal FMD, I would do a thorough physical exam with attention to the blood vessels and at minimum a carotid ultrasound. If there was evidence of carotid FMD on ultrasound or another test, I would recommend looking at the brain arteries as well.
Pam_Mace_RN: Personally, I have FMD in my carotid and renal arteries and know that a lot of our members have multiple vascular areas affected.
Ghennet: Her doctor tells me, that in Germany patients are not treated prventic to "strokes", but only when something has already happened, then they start treatment. How is that in the USA? Is there nothing we could do to prevent more narroving? How often should we do an MRT to see changes. Her renal arterie had changed within half a year from proximatly 20% narrowing to 70 %.That is so fast I think.
Dr__Heather_Gornik: Dear Ghennet. Your child's neurologist/physician is absolutely correct. For FMD in particular, we do not open blockages just because a certain percentage narrowing has been reached. If a patient is not having symptoms from the blockages and has good overall flow to the brain, we would not recommend any procedure to open the blockages. This is very different than a condition of older adults called atherosclerosis or plaque of the carotid arteries where we would consider opening the blockages with stenting or surgery if they are very severe (such as >70 or 80%) even in a patient without symptoms.
Dr__Heather_Gornik: Again for FMD patients, we do not recommend trying to open narrowings unless there are definite symptoms due to the blockages (such severe high blood pressure and renal blockages or mini stroke or stroke for carotid blockages). It sounds as if your daughter has no symptoms of carotid disease right now, and I am pleased to hear that.
Dr__Heather_Gornik: You might want to ask her doctor if she should be on any medication therapy, such as low dose aspirin.
Tricia: Thank you. I already had a echocardiogram, which they say indicates possible "Pulmonary hypertension" and also a sress test which is abnormal. I was unable to attend the conference, so I am not aware of the Dr. Buller's talk. That's why I am asking, maybe you all have some info you could pass along. My main question is, what is the most effective way in detecting FMD in the coronary artery? Thank you!!
Dr__Heather_Gornik: The most affective way to diagnose coronary FMD would be an angiogram, also called a cardiac catheterization. But, that being said Tricia, I don't think your symptoms sound like coronary FMD at all. I am assuming that you are under the care of a cardiologist and if not, I would definitely recommend that you see one. Good luck to you.
scottie: Thank you for this open time to submit questions. What is the difference between a pseudoaneurysm and an aneurysm and what are the implications of each?
Dr__Heather_Gornik: Great question Scottie. A psuedo aneurysm is an outpouching in a blood vessel that occurs after a dissection or tear in that artery.
Dr__Heather_Gornik: This is different than a true aneurysm which is an outpouching involving all layers of the blood vessel wall and generally occurring in an artery that has never had a dissection.
Dr__Heather_Gornik: True aneurysms in particular, when they are large and located in the brain or the aorta increase the risk that they could rupture.
Cleveland_Clinic_Host: We have approximately 10 minutes left in the chat. If you would like to submit a question, do so now. If you have additional questions after the chat, please use our contact link clevelandclinic.org/webcontact to submit your questions or go to http://my.clevelandclinic.org/heart/chat_with_a_heart_nurse.aspx to chat online with a heart and vascular nurse.
scottie: Also- are you finding that most of your patients with FMD are remaining stable? If so, would this suggest that once diagnosis is made and risk factors managed, there is a good outlook?
Dr__Heather_Gornik: Dear Scottie - we are learning more about FMD prognosis with the patient registry. That being said, I am happy to report that I personally had a patient pass away from complications of FMD and even among patients of mine who have had a dissection, the repeat dissection rate seems to be low.
Dr__Heather_Gornik: That being said FMD can cause a lot of symptoms and morbidity in patients such as swishing in ears, bad headaches, high blood pressure and even stroke or dissections in some patients. It just doesn't seem to be shortening the lifespan.
Dr__Heather_Gornik: Oops - so sorry - just read the typing I have NEVER had a patient who died from FMD.
Pam_Mace_RN: I agree with Dr. Gornik - I think it is very important to have a doctor who is knowledgeable in FMD to fully evaluate patients for the extent of their FMD and need for treatment.
Pam_Mace_RN: The majority of patients who contact FMDSA seem to live very normal lives and have a good quality of life.
SnowWhite: 2 months ago, I was diagnosed FMD with my left carotid closed entirely and the right one at 10% usual performance. I still hear swooshing sounds in my ears from time to time - when temperatures are high or when awaking from a nightmare. Is hearing those sounds ok? Will it remain?
Pam_Mace_RN: I was diagnosed 11 years ago and still have the swishing noise. It is not as bad as when I was initially diagnosed but it is triggered with lack of sleep. Sometimes it is just a change in position that help make it stop at night for me - and resting so that it is not brought on.
Dr__Heather_Gornik: Dear SnowWhite - as Dr. Olin shared on Saturday at the FMDSA meeting swooshing in the ears or pulsitile tinnitus is one of the most common symptoms in our FMD patients.
Dr__Heather_Gornik: Sometimes an ENT specialist or audiologist can be helpful in ruling out other conditions and coming up with some strategies for dealing with this annoying symptom.
zprewett: I am a 28-year old, male patient diagnosed with severe hypertension at 24. My BP is well controlled with meds. I have a narrowing in my left renal artery and it looks to be more along the lines of intimal due to a single, smooth narrowing on imaging. They tried to open the artery with angioplasty but were unsuccessful -- dr said they could not budge the narrowing. Is this common with FMD?
Dr__Heather_Gornik: Dear zprewett - intimal disease occurs in about 5 - 10 % of FMD patients and your presentation would be pretty common. I am afraid I do not know the specifics of your case but I would want to be sure that the attempted angioplasty was done by an operator highly experienced in FMD.
Pam_Mace_RN: I think it is important that your physician is very familiar with FMD and performing a necessary procedure - as I have seen in the past with other patients or members that this can make a difference.
scottie: Thanks for that clarification on morbidity and mortality! So- are pseudoaneurysms generally more stable than aneurysms?
Dr__Heather_Gornik: I don't have specific data on that. Generally my sense is yes.
LRussell: Re: uncontrolled headaches - history of mult dissections, a saccular aneurysm (very small) on one carotid, evidence of verterbral FMD as well, history of TIAs
Pam_Mace_RN: I would seek a second opinion and be seen somewhere very familiar with FMD, such as Cleveland Clinic.
scottie: I am on B Blocker (atenolol) for my bp and the headaches and it seems to work well. It was also chosen to reduce the pulse pressure on the tight carotid stenosis and dissections-so my pulse rate tends to be upper 40s to upper 50s. Would you advise an ACE also? is the evidence for remoddelling stronger now?
Dr__Heather_Gornik: If blood pressure is controlled and you do not have renal FMD - no strong evidence to indicate ACE inhibitor or ARB at this time.
zprewett: Does FMDSA have a list of physicians who specialize in FMD?
Pam_Mace_RN: Yes we do have a list of physicians throughout the United States with an interest in FMD and the Centers participating in the patient registry seem to have more experience than other physicians and those centers are listed on the website. Please feel free to contact us for a physician in your area.
Tricia: Thank you for answering my question Dr. Gornik.
Dr__Heather_Gornik: Of course Tricia - best of luck to you.
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Gornik and Pam is now over. Thank you again for taking the time to answer our questions about fibromuscular dysplasia.
Cleveland_Clinic_Host: If you have additional questions, please go to http://my.clevelandclinic.org/heart/chat_with_a_heart_nurse.aspx to chat online with a heart and vascular nurse
Dr__Heather_Gornik: I really enjoyed the substantive questions today. Thanks for joining us.
Pam_Mace_RN: It was nice seeing everyone at the annual meeting. Please visit our website. thank you
Dr__Heather_Gornik: I would like to say a final word of thanks to Pam Mace and FMDSA for all they do to educate and support patients and providers regarding FMD.

Monday, May 16, 2011

Less Common Vascular Disease by Drs. Lau and Olin, including Fibromuscular Dysplasia

CXVascular - Interventional News - Features - Interventionalists should know about the less common vascular diseases


Please take a moment to read Interventionalists should know about the less common vascular diseases written by:
Joe F Lau and Jeffrey W Olin


"Physicians who perform percutaneous endovascular procedures encounter a multitude of vascular diseases that may masquerade as obstructive atherosclerotic arterial disease. While atherosclerosis is clearly the most common condition seen, complex inflammatory, genetic or structural processes may either not be amenable to an endovascular approach or actually be harmful and thus lead to outcomes that are not satisfactory"


This is important information for every FMD patient to share with their team of doctors.


Carotid FMD
***Important- screen for brain aneurysm****