Aa
FMD
I have an 52 yr old aunt who had a mild stroke 4 yrs ago as a result of fibromuscular dysplasia. The affected carotid artery was 100% blocked. A recent doppler found the other carotid artery to be 50% blocked. What are the treatments if any and the risk?
I left you a message on the other site with my comcast e-mail address in addition to the address used to open the account. Write me back here if it doesn't go through. I'm new at this.
NancyT
NancyT
I guess your e-mail address was blocked. It didn't come through. Do you have any other ideas? I can put my e-mail address in my profile if that's allowed. I don't mind that.
Could you call me? Way to much to write. Email ***@**** and I will give my phone number.
Hi Melva,
My name is Nancy. Since I noticed other members on the forum by that name, just call me NancyT. I live in Jacksonville, FL and I recently turned 60.
I'm very new at being sick and I'm still in the anger stage. Less than a year ago I was healthy, athletic, and could work in my yard all day without any problems. I've had Migraines since I was at least 5-years-old but that was my only complaint up to April 2008 when I saw my primary care physician for my annual physical. In April 2007, everything was normal, except the Migraines that I was controlling OK with Excedrine Migraine. My physical in April 2008 was different, however. My Migraines were worse, were occuring every day, and I was taking Excedrine Migraine at the maximum dossage even though it was ineffective. I was also experiencing tinnatus, fatigue, and aching hip and knee joints. My doctor ran the routine blood tests, scheduled a treadmill test for the next day, and ran a CT brain scan within the week. The treadmill came back great for my heart but the CT scan showed that I had a possible brain aneurysm and a cavernoma (benign brain tumor). My blood tests came back with my liver enzymes elevated 3 times above normal (they were normal the year before), indicating that I had liver disease of some sort. That date, May 1st, started a whole series of medical tests of my brain and abdomen and visits to both Baptist Medical Center and Mayo Hospital in Jacksonville.
The bottom line of what the doctors diagnosed*:
*I don't have an aneurysm. I have a never before seen in medicine trident-shaped artery in my brain. It's not doing any harm so it doesn't require surgery. My young neurosurgeon at Mayo was thrilled to discover it.
*I do have a cavernoma and my neurosurgeon thinks that it has probably caused my Migraines all these years. He put me on Topamax in July 2008 and I have not had a Migraine since August. He followed-up in Feb 2009 with a MRI and found that the cavernoma had not changed in shape or size in the 9 months since my last MRI. He, therefore, did not recommend surgery.
*In the process of the Cerebral Angiogram that he did to look at the suspected aneurysm, he found FMD of the carotid arteries. He immediately put me on aspirin before I could even go home. My primary care physician put me on a calcium channel blocker to prevent a stoke.
*I saw an ENT at Mayo for the tinnatus. He couldn't give me a reason for it. He wrote it off to my attending rock concerts when I was 18-19. I don't agree with that explanation. Why was I OK for 40 years? My neurosurgeon said that the FMD wasn't the cause. I'm interested in your EDS explanation. My doctors even took me off aspirin for 6 weeks and the tinnitus only became worse (that was before the FMD was discovered).
*The liver disease turned out to be the most difficult to diagnose and is the most life-threatening disorder. It took my doctors 8 1/2 months to diagnose Primary Biliary Cirrhosis because I have the negative AMA type that doesn't show up on the blood tests for PBC. It was previously ruled out by 2 doctors. I had a liver biopsy in Dec 2008 but it wasn't until 14 Jan 2009 that my liver specialist and a doctor at Mayo Jacksonville concluded that I have negative AMA PBC. I was immediately put on Urso Forte 500mg BID. I was already on a restrictive liver diet (i.e., no alcohol, no mushrooms, no rare or undercooked meats). I am responding to the medication and, hopefully, it will save my liver and I will avoid a liver transplant. I'll see my liver specialist again on March 25th.
*In searching for a liver diagnosis, my doctor found that I have Celiac Disease right before Christmas 2008. I was immediately placed on a gluten-free diet and I remain on that restrictive diet. This diet in addition to the liver diet has made life very dull and has caused IBS which I didn't have before I went on the diet.
**Other symptoms that have not been been resolved other than the tinnitus are the aching hip and knee joints and a new symptom that I reported to my doctor 2 weeks ago - swelling and stiffness in one 1st joint of a finger on my right hand. I hope I'm not getting RA now because I already have 2 autoimmune diseases and my sister has RA. I'm very interested in your EDS. I'm also nearsighted and my sister is very nearsighted. Other new symptoms that I suspect are related to the Urso Forte and/or the gluten-free diet are hair loss, dry eyes, patchy rash around eye and neck, dry skin, and, as mentioned before, IBS.
My name is Nancy. Since I noticed other members on the forum by that name, just call me NancyT. I live in Jacksonville, FL and I recently turned 60.
I'm very new at being sick and I'm still in the anger stage. Less than a year ago I was healthy, athletic, and could work in my yard all day without any problems. I've had Migraines since I was at least 5-years-old but that was my only complaint up to April 2008 when I saw my primary care physician for my annual physical. In April 2007, everything was normal, except the Migraines that I was controlling OK with Excedrine Migraine. My physical in April 2008 was different, however. My Migraines were worse, were occuring every day, and I was taking Excedrine Migraine at the maximum dossage even though it was ineffective. I was also experiencing tinnatus, fatigue, and aching hip and knee joints. My doctor ran the routine blood tests, scheduled a treadmill test for the next day, and ran a CT brain scan within the week. The treadmill came back great for my heart but the CT scan showed that I had a possible brain aneurysm and a cavernoma (benign brain tumor). My blood tests came back with my liver enzymes elevated 3 times above normal (they were normal the year before), indicating that I had liver disease of some sort. That date, May 1st, started a whole series of medical tests of my brain and abdomen and visits to both Baptist Medical Center and Mayo Hospital in Jacksonville.
The bottom line of what the doctors diagnosed*:
*I don't have an aneurysm. I have a never before seen in medicine trident-shaped artery in my brain. It's not doing any harm so it doesn't require surgery. My young neurosurgeon at Mayo was thrilled to discover it.
*I do have a cavernoma and my neurosurgeon thinks that it has probably caused my Migraines all these years. He put me on Topamax in July 2008 and I have not had a Migraine since August. He followed-up in Feb 2009 with a MRI and found that the cavernoma had not changed in shape or size in the 9 months since my last MRI. He, therefore, did not recommend surgery.
*In the process of the Cerebral Angiogram that he did to look at the suspected aneurysm, he found FMD of the carotid arteries. He immediately put me on aspirin before I could even go home. My primary care physician put me on a calcium channel blocker to prevent a stoke.
*I saw an ENT at Mayo for the tinnatus. He couldn't give me a reason for it. He wrote it off to my attending rock concerts when I was 18-19. I don't agree with that explanation. Why was I OK for 40 years? My neurosurgeon said that the FMD wasn't the cause. I'm interested in your EDS explanation. My doctors even took me off aspirin for 6 weeks and the tinnitus only became worse (that was before the FMD was discovered).
*The liver disease turned out to be the most difficult to diagnose and is the most life-threatening disorder. It took my doctors 8 1/2 months to diagnose Primary Biliary Cirrhosis because I have the negative AMA type that doesn't show up on the blood tests for PBC. It was previously ruled out by 2 doctors. I had a liver biopsy in Dec 2008 but it wasn't until 14 Jan 2009 that my liver specialist and a doctor at Mayo Jacksonville concluded that I have negative AMA PBC. I was immediately put on Urso Forte 500mg BID. I was already on a restrictive liver diet (i.e., no alcohol, no mushrooms, no rare or undercooked meats). I am responding to the medication and, hopefully, it will save my liver and I will avoid a liver transplant. I'll see my liver specialist again on March 25th.
*In searching for a liver diagnosis, my doctor found that I have Celiac Disease right before Christmas 2008. I was immediately placed on a gluten-free diet and I remain on that restrictive diet. This diet in addition to the liver diet has made life very dull and has caused IBS which I didn't have before I went on the diet.
**Other symptoms that have not been been resolved other than the tinnitus are the aching hip and knee joints and a new symptom that I reported to my doctor 2 weeks ago - swelling and stiffness in one 1st joint of a finger on my right hand. I hope I'm not getting RA now because I already have 2 autoimmune diseases and my sister has RA. I'm very interested in your EDS. I'm also nearsighted and my sister is very nearsighted. Other new symptoms that I suspect are related to the Urso Forte and/or the gluten-free diet are hair loss, dry eyes, patchy rash around eye and neck, dry skin, and, as mentioned before, IBS.
This is Melva. I have an associated condition to my FMD. It is called EDS(ehlers danlos syndrome) Many people with FMD also have EDS. There is an ongoing study to prove it. Both EDS and FMD are connective tissue disorders. EDS is lack of collagin to the general body where FMD is lack of collagin to the arteries. Tinnitus is a major symptom of EDS or connective tissue disorder. I can explain it to you and you can let your Dr know. I would love to hear your other symptoms. I can let you know which ones are connected to EDS. I have bad knees from childhood, IBS, RA, very nearsighted, easily bruise, etc. I also have mitral valve prolapse and a dilated aortic root. Yes- they are all connected.
Thanks for the advise. I joined the support group today.
I have other medical issues so my doctors have checked out problems in my liver and renal areas within the last three months. I've had about every test known to medicine since Christmas so my arteries are OK for now and I don't have high blood pressure. I don't have any symptoms of FMD except a chronic stiff neck. My doctor at Mayo said that my tinnitus was not caused by my FMD. The cause of it remains unknown.
I have other medical issues so my doctors have checked out problems in my liver and renal areas within the last three months. I've had about every test known to medicine since Christmas so my arteries are OK for now and I don't have high blood pressure. I don't have any symptoms of FMD except a chronic stiff neck. My doctor at Mayo said that my tinnitus was not caused by my FMD. The cause of it remains unknown.
Have you visited our support group? FMD can appear later in other areas. So you need to have the common areas checked. Not many Drs are up to date on FMD. This makes a support group vital. It is a bunch of good people and it is free. Go to yahoo health groups Fibromuscular dysplasia. Some people have been told to wait and see unless they have stroke symptoms. I personally do not like that option. I found it in my renals and mesenteric since the carotids.
I also have FMD of the carotid arteries. My case was found accidentally while doing another proceedure and I've never had a problem because of it. My neurosurgeon immediately put me on aspirin therapy and a calcium channel blocker to prevent strokes. He told me to tell paramedics know of my risk of a stoke if I'm involved in an automobile accident. I've wondered since then if I should wear a Medic Allert Bracelet.
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