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(9/2/02 12:00 pm)
Please share your story.

Unregistered User
(9/16/02 10:33 pm)
Nancy's story
I am grateful for all you have been doing for FMD and your patience and kindness.

I found an email from my niece who is a nurse and eldest child of my sister who died from FMD complications. I learned I had the same disease in 91.....

My sister had an Abdominal Aortic Aneurysm repaired when she was in her late 30's. The August she died age 53 she was admitted to the Hosp with a dissecting abdominal aortic aneurysm. Also with uncontrolled hypertension. It was inoperable because it was from her abdomen to her legs. Within 48 hours she had the cerebral aneursym spasm or leak, where in her head I do not know. It wasn't a carotid artery.

Soon after that the abdominal aortic aneurysm dissected up into her chest and the aortic arch. Once the aneurysm got to the aortic arch it probably ruptured and she died. She also had poor kidney function and that along with smoking added to her high blood pressure problems. This dialogue is from my nieces memory of her moms health issues. I only remember being in high school when she first was in the hosp. and really no one would have taken her seriously except that she had 5 years of med. school behind her. She was even considered for a psycho ward because she kept insisting she was ill.

She didn't talk to me about all her problems. She was also seen at Mayo Clinic and in Swiss Hosp. She visited me 2 weeks before she died. I was camping when I got the information she was in the hosp and not expected to make it. I flew to Mich. for her memorial services. I always carred a slip of paper in my wallet with the words "Fibromuscular Dyslpasia" No Dr. mentioned that I could be a family problem. Most just shrugged it off. In fact last year my new Dr. said "I will have to go on the internet to find out information for you." Aug. 2000 after my last angiogram in UCAF a nephrologisit went on line and wrote some follow up info me. I am suspose to have follow up angiogram on renal arteries August 2002 and not convinced anything will be learned.

Now for part 2 in Dec. 91 when I had first angiogram and the left carotid artery dissection occurred while they were looking for the reason for my brain hemmorage they thought to take a section of the artery for a study. It was a puzzle for them to try to figure out why these arteries were so weak and tore so easily.
The study concluded....after months of having the experts look at the section.

"There is a significant atheromatous inimal changes with mineralization in the specimen designated "left carotid intima". Although abundant acid mucopolysaccharide is present in the vessel wall, elastic fibers are without significant elastic fragmenttation. Thus, we do not see features of cystic medial necrosis. The alcian blud stain at pH 2.5 shows abundant mucopolysaccharide deposition in the vascular wall of the specimen. Although this feature is nonspecific and my be seen in hypertensive individuals, it also raises the question of a connective tissue disorder. Further biochemical studies may be helpful in this case.

So is FMD a connective tissue disease? I have ask and ask and seen a rhymathologists (?) at UCSC who had no further studies known to him and only took my blood pressure for about 300.00. The only Dr. really interested is in Cinn. Ohio Dr. Goldstone and I will email him and tell him about the site.

Thanks again, Nancy in CA

Unregistered User
(9/16/02 10:36 pm)
Nancy can be reached at (Nancy Dominick)

Thank you and I think she was first diagnosed in the 50's with Kidney problems but was always told the problem occured in childhood or about then. No one really connected all the parts until she died. I don't know if she had angiograms to actually do studies on her arteries.

I only know she had exploratory surgery to try to discover what was wrong and that was after her 5th child was born. A very long and difficult struggle for her kids and especially hard on my mom. My mom died never knowing that I have the same disease but to a different degree. I know in 91 when I was in the hosp. waiting to have the aneurysm in the brain repaired the Dr. said if this had happened only a few months earlier I would have any medical treatment for you. I had it repaired with a silicone baloon implant which closed off the rt internal carotid artery.

I believe silicone was taken off the market because of all the lawsuits involving leaking breast implants. I don't know if it is still used to repair aneurysms today. I will ask when I have my next follow-up in August. Nancy

I have to get to work. Yesterday it was in the 70's and in the late afternoon a friend and I went to hear gospel music and it was so inspiring.

Unregistered User
(9/16/02 10:39 pm)
Anne's Story
Anne Elizabeth Burch Stapsy

719 Ridgeside Drive

Monrovia, California 91015


Born July 24, 1939

San Bernardino, California

Raised in San Francisco and Berkeley California, now living in Monrovia, in Southern California after twenty some years in NYC.

Normal childhood diseases like chicken pox etc. No rare or unusual diseases. No polio.

Car Sickness as youth ending at about 14 years of age

Tonsils removed at some time between the age of 8 and 10 (my father was a dr. and decided while we were on a street car and I was vomiting that we would go directly to the hospital and this would relieve the problem. (no, it did not)

Lots of serious dental work (English teeth)

Sinus (probably allergies that they did not know much about)

Irritable Bowl syndrome (dysfunctional family syndrome is what I think it was)

Suffered from what was called growing pains with much pain in legs. (beginning of restless leg syndrome??) Probably had genetically problematic Kidney but at time was not recognized. Did have “Kidney” problems early in adulthood but nothing that was diagnosed as a problem that should be watched. Always had very low blood pressure and low cholesterol.

Married twice, latest to John Stapsy, 22 years

Four adult children from first husband, ages 36 to 41 fourth child born at 7 months. Others all close to or over 8 lbs.

Eleven grand children ages 1 plus years to 17 years, six boys and five girls

Smoking since approximately 19 years of age, reduced in the last few years

Occasional wine or drink but very occasional because of allergies.

Second of four children, one older brother and two sisters, one dead of suicide three years ago. Living sister has Lupus and had a history of drug and alcohol abuse that has been under control for approximately 10 years. I think that all four of us have suffered from underlying depression since childhood. All have significant allergy problems.

English/German and ?

Partial hysterectomy at age 36 due to months of excessive bleeding. Very enlarged uterus with many polyps

Knee surgery / right knee for congenitally defective knee 1994. Left knee probably has same problem but am not doing anything about it.

Restless leg syndrom always but only medicated in the last six years.

Disgustingly healthy and active until sudden onset hypertension that after 2.5 years was diagnosed as renal FMD. Right renal artery. 1995 right renal angioplasty, no stents. Left artery was looked at but clean at the time

Repeated renal angioplasty/stenting right artery and angioplasty one time in left renal artery in 1997 and 1999 four times in right renal artery and once in left.

One angioplasty and stent in coronary artery 1999 Right renal artery was atherosclorsis and left was FMD.

Carotid Doppler shows blockage in left subclavian and vertebral arteries but clean carotid arteries. Diagnosed with Steal syndrome. Because I have not had an angiogram of these arteries, I do not know if the blockage is FMD or Atherosclorsis. Body seems to have compensated for the lack of blood from proper source to the left arm and I am

a symptomatic.

Interventional Radiologist always checks all arteries legs feet and hands for circulation and pulse. There has been a decrease in circulation over the past few years to the legs.

Have put off any test or Dr. visits for one year (ending on the 6h of July) due to overwhelm.

Medication that I am taking now.

Cozaar 200 mg a day 100 is 100pm

Clonipin 1mg a day

Estratest (estrogen)

Claritin twice a day when necessary otherwise once a day

Aspirin 1 adult per day

I am keeping my blood pressure at approximately 100/60. If it goes up to or over 120/80

I know that I am in trouble.

Continue to have intermittent mid right back pain. Started with third or fourth renal angioplasty.

I did not do well at all on a beta-blocker. Sudden brain and body shut down. Also did not do well on diuretics. Allergies to medications are a problem and always have been. Cozaar is the only hypertension medication that I have not had negative symptoms with.

There is no family history of FMD but there is a history of mother and grandmother having kidney problems. My mother had renal angioplasty and stenting at the age of 87. Very likely that it is atherosclorsis. That was the diagnosis and I have the films. Although both of her renal arteries were blocked they only did one due to the condition of her kidneys. I did not agree with them based on what I knew of both her condition and what I know about angioplasty and the dye that is used but these were not doctors that I had a relationship with and they did not want input from the daughter.

My youngest daughter was born with a defective aortic valve and after two children and an extremely active life style it wore out and was replaced three years ago. The Doctor made a mistake and cut into the Venus node and she has a pacemaker. Her oldest daughter, was diagnosed with Non Hodgkin’s large cell lymphoma four years ago has been treated and is in remission. All of the other adult children and their respective children are healthy.

Type A personality, when working 60 to 80 hour weeks were the norm running a video production studio in NYC. Closed the business and moved to California in 1996. Hate it and wouldn’t mind moving back to NYC and going back to 60 hours a week.

Update as of 10/11/01

Have had renal angioplasty once 12/2000 and again 9/2001. Also had coronary angiogram in 9/2001 and found 40% blockage in original stent that was put in in 1999. Did not do angioplasty in coronary stent, will watch to see if it gets any worse. Did not put any more stents in right renal artery and left renal artery was OK. My interventional radiologist does not want to put more stents in as they continue to collect Fibrous cells. Can’t remember the name that he gave same.

This time my blood pressure did not go back down to the normal 100/60 after the angioplasty and my creatinine level has not gone down as of a week after angioplasty.

As a rule, as soon as I have angioplasty of the right renal artery both the creatinine level and the blood pressure drop significantly. This time the blood pressure went up. I am giving it a month before I go in and have these levels checked again.

I am suspicious re: the conclusion that the arteries that are having a problem other than the right renal an left renal arteries due to plaque (atherosclorisis) I understand that there 5 types of FMD and knowing that the doctors are not familiar with this disease and seem to only recognize the “string of beads” type, it would not surprise me if the other arteries have a form of FMD that is not being recognized for what it is. I have never had a problem with cholesterol or weight and have always been active. Seems strange that the renal arteries would be FMD and the other arteries would have something different.

Update 2/24/02

Circulation getting worse in both legs and hands. Beginning to get pain in fingers of left hand and unless positioned correctly circulation stops.

Tinitis in left ear leads me to believe that there is a worsening in the stenosis of the left vertebral artery which I will have checked.

Had one incident of with I think was burst blood vessel in right breast. Have yet to have mammogram but do intend to as soon as insurance is under control. Still experience occasional pain in right breast although the swelling has long gone. More of an internal itching than real pain.

Linda llshat7239yahoocom
Unregistered User
(11/11/02 6:06 pm)
My name is Linda--am from Long Beach, California for 30 some years. Prior to that lived in Iowa.
I was diagnosed with hypertension in 1986 at time of hysterectomy, but am sure had it before that as BP was always a little elevated at doctor visits. Started treatment for htn in 1986.
I went through a very stressful environment at work, and in 1995 was found to have a split in the end of the acromion process (tip of shoulder) that was causing tearing in the joint and torn rotator cuff.
During time at work, had to take time off for uncontrolled hypertension. Had surgery for repair of rotator cuff, and following surgery noted hand turning blue, pain that was horrific like nerve being cut with knife, and blueness went on to progress to all four extremities. Was diagnosed with reflex sympathetic dystrophy and Reynauds phenomenon. It is a rare disorder where sympathetic nervous system kind of goes crazy causing symptoms. Had 7 stellate ganglion nerve blocks (stick a needle deep in side of neck and inject lidocaine-like drug in attempt to control symptoms. They didn't work so was treated with drugs for the pain. Thank God the pain is much better now most of the time, but does recur. RSD is also a rare and progressive disorder.
Was placed on permanent disability because of BP and RSD, and never got BP controlled. Maybe 3 years ago, my doctor recommended that I have that quick scan (can't recall the formal name) to check heart for damage from htn (ie calcium deposits). The heart showed no calcium but scan showed what looked like aneurysm of L renal artery. At same time they started workup for tumor called pheochromocytoma that can cause labile, uncontrolled htn. Those tests proved positive for tumor, but they are usually on the adrenal gland and small and had difficulty locating it. That scan also showed solid nodule on thyroid and biopsy showed follicular neoplasia. Supposed to remove pheochromocytoma first as is very sensitive surgery that can have problems, so had 6 hour surgery looking for the little devil tumor. They couldn't find it after all that. At some point in all this had angiogram that diagnosed FMD of renal arteries (2 renal arteries on each side and they all had it). The R was the worst and R kidney showed some necrosis at the bottom. Before treating that, they sent me to Mayo to a BP/Pheo specialist who reviewed all, did more tests, couldn't locate the little devil either, but said I had it. Went back to Calif, had angioplasty on R and thyroid removed (another 4 hours of surgery) which showed there were two nodules. Therefore they had to remove the entire gland, and it turned out benign.
Recently, md decided to restart workup for Pheo, and am waiting to find out results of MRA as seems to show something in the L kidney also now. BP still irratic.
Other than that I'm in great health with blue and cold fingers, toes, feet and legs.

Unregistered User
(9/4/03 10:10 pm)
FMD and Me
I have recently been diagnosed with FMD after the birht of my first child. It has quickly spread from my left renal artery into my right renal artery. I have already had one enurism fixed with another growing. I have been reading alot about FMD lately and reading everyones responses and I though I would ask you guys for help? Does FMD spread to the Carotid artery, which seems to be the most severe case? Not much has been mentioned about having children whilst having FMD, is it advisable and/ or sensible? :\

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