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Unregistered User
(12/29/02 10:33 pm)
West Virginia - FMD
My name is Robert Frame and I live in South Charleston, West Virginia. I am a 61 year old male. I have suffered with severe migraine headaches most of my life. I’ve been a tractor trailer driver for over thirty years. In 1996 I suffered a TIA/mini stroke. I had blurred vision in left eye which eventually became double vision which I had surgery on in 1997; helped some but has continually gotten worse since. In 1998 I had triple by-pass heart surgery . In 2001 at follow up examination I had stress test and heart catherization. The catherization showed that one of the arteries used for by-pass had occluded/closed. Then in August 2002 subsequent follow up with cardiologist discussed fluctuating blood pressure and an ultrasound of carotid arteries was ordered. This ultrasound indicated aneurysms bi-laterally both left and right carotid arteries. Was referred to cardiovascular surgeon who had done by-pass work. He then ordered MRA and an angiogram of the carotid arteries. The angiogram confirmed the carotid aneurysms and also indicated an intra cranial aneurysm of the right communicating artery and a severe case of fibromuscular dysplasia superimposed on atherosclerotic vascular disease. I have been seen by two neurosurgeons and both say that they would not do any surgery in my situation. Referred back to cardiovascular surgeon with suggested treatment of an aspirin a day. Was then scheduled for surgery of left carotid artery 11/20/2002. I had ultrasound looking for arteries to do by-pass and this ultrasound indicated an aortic aneurysm. Surgery was cancelled. Approximately a week later was notified that they wanted to do surgery on right carotid artery. Went through pre admission testing and then this surgery was cancelled. I was told that we would wait approximately two months and then do more ultrasounds . This is where I am as of this date. Have been told to do absolutely nothing and keep blood pressure to bare minimum. Hopefully this has not been too long or time consuming. I do have pictures of angiogram of carotid aneurysms which include the intra cranial aneurysm and FMD can be seen. I will not include the pictures but anyone wanting to see them let me know and I will send them to you. Thanks, Bob Frame

Unregistered User
(1/1/03 10:26 pm)
Continued information including medical care information
Hi Celeste,
Sorry to be so late with reply. I think us older people are just slower lol. Please feel free to share any of my info with anyone. You mentioned the fmdfaqs site, I went there and signed up for FMD but not the world site. I am going to go back and sign up for it also.
As for grave issues, I know pretty much where I stand but I will not give in and quit. Anytime you find yourself in a bad situation, stop and look around, when you do you will find someone in a worse situation than your own.
I have been in contact with several people since joining group. I welcome anyone with questions or info and just to talk. I may be a little slow with reply but I will answer all e-mail as I can. As you said there are some great people out there and people from everywhere.
As far as my receiving care, my initial examination/ultrasound was done by my cardiologist Dr. Badshah Wazir at South Charleston Cardiology Associates. They have facilities for stress testing, ultrasounds, etc. My cardiovascular surgeon is Dr. Jay J. Kim of Thoracic & Cardiovascular Associates, Inc. of Charleston, WV. My angiogram was performed at (CAMC) Charleston Area Medical Center - Memorial Division in Charleston, WV. My neurosurgeons were both with Neurological Associates also in Charleston, WV; their names being Dr. John Schmidt, III and Dr.Robert J. Crow. Family physician is Dr. Jose Y. Auditor of South Charleston, WV.
I do have an HMO type medical insurance. I believe it pays 80% to a certain point then major medical kicks in. Also have to pay a deductible which differs according to what procedure is being done.
Hope this isn't too long. You and yours have a happy and prosperous 2003. Bob Frame

Unregistered User
(1/11/03 10:00 pm)
Robert Frame, who wrote this article is my father. I am almost 40 years old, and he has been the most stable thing in my life. He has had several health problems, however, he has made it through them all. At this time, faced with this rarely heard of disease, with no cure, has been a devasting reality to our family. We have been a lucky family and were always close, not saying we didnt have our differences:) , but my daddy has always been there for me, and I cannot image living in this world without him being in it. It is an awful thing when you look for answers and there arent any. I just ask that anyone who reads this or who can help get funds to research this disease process to please get others involved. They say that this is a hereditary process so it has to be stopped for my dad and all the others out there as well who have no hope. My prayers are with all who have had to go through this, who are still going through it and their families as well.
K Travis

Registered User
(8/12/04 12:32 am)
Re: West Virginia - FMD
Hi Bob,
My name is Leigh Anne Truett and I live in Tampa,Florida. My story is similar to yours because I have FMD in both kidneys, and aneurysm on my aorta and FMD in the internal Cerebral arteries. I am 43 years old and had a stroke 2 years ago. During these past two years I have been bounced around Tampa to doctors trying to find a way to help. I was scheduled for a aortic valve replacement and aorta replacement last December, but the Lord stepped in and nothing had to be done, valve was working and the aneurysm was smaller. Tampa docs were planning on doing a MCA-STA bypass operation this week, but now I am going to Atlanta to see two docs there for possible angioplasty and stenting. I would love to see something on Discovery Health Channel regarding FMD. I don't get the apathy from the media. Does (heaven forbid, for I wouldn't want to put this disease on anyone) a celebrity have to come down with this disease before we get our story out? Just wondering how you are doing? Your post was a long time ago and I just found it tonight.

Unregistered User
(8/14/04 11:21 pm)
Hi all,

My wife was just diagnosed with FMD. She has had a history of migraines and just developed some neurological symptoms recently that caused her to be admitted and get a CT angiogram, MRA and several other tests. Turns out that she is 90% occluded in her internal carotid arteries bilaterally. The doctors have not yet come back with a definitive answer on her treatment plan, but supposedly we have a great neurovascular surgeon coming in to consult on her case Monday. My wife is 36 and has been healthy to this point, other than occasional bad migraines. No history of high blood pressure or other warning signs. Now she faces the possibility that she will have to undertake a high risk procedure or be on blood thinners for the rest of her - hopefully long - life. I am sorry to hear that there are others going through the labyrinth of this disease as she is. I think that this disease is quite rare, and it probably will take a celebrity coming down with it before it gets any exposure. I heard that is is found in about .6% of people, which does add up to a huge number when multiplied by the population of this country, but what are 1.7 million ordinary people versus one celebrity... Sad but true in this day and age, it has to happen on television before its real. I wish you well, and hope that your families are hanging in there.

God bless.

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