Anyeurisms and APS? Are they Linked?

[KellyInTexas]

Aneurisms with APS?

If the outer membrane of vascular ( any size- capillary, arterial, ...) come " under attack", then is it plausible these " highways and byways" might become weakened and prone to aneurism?

I ask for two two reasons:

1. Since my DVT's My veins continue to off and on, feel like an invisible ghost nurse starts IV's in random veins throughout my arms and legs. My doctors are baffled. Vascular surgeo has ruled out vasculitis, phlebitis, and is boubtful of small nerve neuropathy. My rheum is considering a biopsy for this. I'm concerned about the vascular manifestations I'm experiencing, since none of my doctors seem to understand it.

2. My mother had 2 DVT' events. One at age 46 - resulted in an PE. The second at and 60. Resulted in a PE. In 1994 She and underwent a massive surgery for a Abdominal aeortic anyeurism. The aeortic arch was also involved. Dacron was used to replace parts of the artery. A " bird cage " was installed to catch flipped clots should they arise. She survived only 18 months post surgery and died at 66 years of age.

Looking back I'm thinking she must have had APS. My brother in law ( 22 years my senior) was in his residency program during her first clotting event and was her attending resident physician. He has been her GP ever since, but always sent to specialists there after. APS was never even heard of.

[AnnNY]

I don't want to frighten you, but a friend of mine just died of something called Wegners which is autoimmune. Her aorta burst. It came on relatively quickly. It should have been treatable. I guess they figured it out too late. Also, I have a friend with Giant Cell Arteritis. So they immune system can attack everything. But they do have to figure it out, and some things are so rare.... I know my friend with GCA was found with a biopsy.

[KellyInTexas Administrator]

This roared in like a march wind . Fast and furious and seemingly in tandem with the DVT's. ( while in hospital- but throughout body.) kidneys and lungs seem ok scan and lab wise. But as as auto immune diseases like play mates, and the APS is secondary - I'll ask to rule this out. It's honestly scaring me.

[AnnNY in reply to KellyInTexas]

Sorry, dear. But maybe getting a biopsy would be a good idea if you are having mysterious problems with your veins. My friend with GCA is being treated with large doses of prednisone. Before she was diagnosed she was telling me that she had a strange lump in her head, and I kept saying I thought she needed to see the doctor. Fortunately, she did get treated. I hope all comes back clear.

[AnnNY]

Yes, the Wegners that attacked my friends aorta was really very rare. Her sister-in-law told me there had only been 12 reported cases. One of the first symptoms was sinusitis, and I have problems with sinusitis. We also had been roommates for a couple of years. I had a moment of worry, but then I decided it would be coincidental beyond possibility.

Here's some info on vascultitis:

rheumatology.org/I-Am-A/Pat...

I may just be hyper alert to it since I had two friends with forms of vasculitis.

[Wittycjt in reply to AnnNY]

KellyInTexas maybe this link could help i know its from the past but maybe it can help you now, all the best, Cindy

[KellyInTexas Administrator in reply to Wittycjt]

Thanks Cindy. Oddly enough, my mom in mid 1990’s had a very large abdominal aortic arch aneurism repaired 18 months before she died. ( surgery in Houston.) of course... right after surgery she started flipping clots to lungs so they went in and put in a ,” bird cage.” ( IVc filter.)

She was placed on warfarin for 6 months maybe? 12 months? Then she did terribly... had a heart attack ( elevated cardiac enzymes) and stroke and died...all within 24 hours.

[KellyInTexas Administrator in reply to KellyInTexas]

Looking back on this post - things have come into focus now with veins.

I saw Dr Hughes. He said without a doubt my mom had APS. My brother told me that my mom had a DVT after I was born also. I didn’t know that before. I also learned that her sisters suffered migraines and multiple miscarriages.

[Wittycjt in reply to KellyInTexas]

Sorry to have reminded you about your Mom. Did you see the link in AnnNY post here though?

[KellyInTexas Administrator in reply to Wittycjt]

Yes. Thanks!

[MaryF Administrator]

They normally get discovered rather than routinely found, however I enclose these papers for you to look at: ncbi.nlm.nih.gov/pubmed/183...

ard.bmj.com/content/64/12/1...

ncbi.nlm.nih.gov/pubmed/185...

MaryF

[KellyInTexas Administrator]

Thank you very much!

[suntap]

Hi Kelly

I was taken to hospital with chest pains about 4 yrs ago. They did lots of tests and discovered a thoracic aortic aneurysm. Your aorta is supposed to be about 3cm, mine was at 4,2 0r 4.6; hard to remember facts when aps plays with your memory. I was told my the cardiologist that they would monitor me and surgery is only ever done once your aorta reaches 5cm dilation. That is here in Aust, and what I was told anyway. Apparently once your aorta gets to 5cm it is at imminent risk of rupture. They do not do the surgery any earlier as the surgery has nearly as high a mortality rate as the rupture - 80%. This was a couple of years before my PE and aps dx. It was explained to me that the aorta would have a blockage of sorts and the blood supply in trying to go around the blockage, causes an aneurysm or aortic dissection. The walls of my aorta have been stretched and separated. The cardiologist did so many tests trying to discover my heart disease, but could find none. My heart is quite healthy - about the only part of me that is these days. lol. I am sure my aneurysm was caused by APS, but have not asked any doctor to confirm that. Mainly because I cannot find a dr here in Aus who knows anything about APS. I have had a couple of follow up MRI's done on my aorta and it has never again increased in size - the drs were sure it would have. The longer you survive one, the better your prognosis. I now think the aneurysm if the least of my problems.

Sorry about the long post. all the best. Di. x

[KellyInTexas Administrator in reply to suntap]

Yes, I'm not worried about my aorta. My post was confusing. I only wonder if it is a reflection of the health of the overall veins in general.

On a side note to you- you are absolutely correct. My mother was given the same guidelines of 5cm safety threshold. Her surgery was in Houston Texas- at that time one of the top centers in the world fir this particular surgery and one of the top thoracic surgeons in the world, Dr. Safi. With scans she showed about 6.5 but surgeon told her sometimes the scans underestimated the side of the "ballooning out". . This was in roughy 1993 so surely scanning capabilitys have greatly improved. Sure enough, when they got in,it was actually at 9cm.

[KellyInTexas Administrator]

... but that would mean you have had an aortic thrombosis. I see you had a PE. Is it possible to confirm the clot was in the aorta? So much must still beontheory alone. ( I replied to you above also.) I suspect that is exactly what happened.

I spoke with my brother yesterday after I posted my question. I was born 21 years later- same parents! My mom had pre eclampsia giving premature birth to my identical twin sisters , who miraculously lived! ( pre eclampsia- premature by 3 mos. . Suspicious...) She was told she was left unable to conceive again. So, for 19 years she never used birth control- but surprise! I came along.

Anyway- my brother told me of a first clot I didn't know about my mom had when I was 18 mos old. I knew about the two subsequent ones which resulted in PE 's- but the first one did not,apparently. I suspect that what happened to her aorta also happened to yours.

[jetjetjet]

I have 13 lesions in my brain discovered after Dia. of the APS and when Dc's did full body inspection-and they said it was most likely due to APS-tat's what they told me ??

[jetjetjet in reply to jetjetjet]

Or white matter another thing it was called