Brain Aneurysm

[Skyllark]

has anyone had a Brain Aneurysm, what was your doctor’s next action for it?

[GinaD]

I was told as a child that I may have inherited one. Then after the brain scans I had back in 2000 when I was diagnosed with APS, I was told thst no aneuyrism was seen, which, they added, does not mean I do not have one. They added that there was nothing that could be done if tbey had discovered one. At the time, I concluded that maybe I'd rather not know if I do have one. Current age 68 and no symptoms.

[Pooky7]

hi. I had a left renal vein aneurysm repaired. They went through my neck and filled it with 25 feet of titanium wire. It was the size of a softball. The Drs performed this while I was on warfarin, aspirin and fish oil. It was crazy!!! I was half awake. 4 of my cousins had brain aneurysms repaired. All good. I am 12 years post. Abbott in mpls specializes in it I was the 7th one in the world with the diagnosis and 1st to be repaired like that. I am blessed. I am 57 now

[KellyInTexas Administrator]

hello ,

I have quite a lot of information to give and link you to.

- the size is important and knowing why ( if and any and what kind) of genetic variants on specific genes could have caused this.

- I was diagnosed about a year ago with Loeys-Dietz syndrome-5 (TGFB3). It’s a genetic autoimmune connective tissue disease.

- my autoimmunologist had me tested because my mother had an aneurysm ( aortic abdominal aneurysm) - had extensive surgery- resulted in lots of clotting/ PE’s post op as she has undiagnosed APS, and she passed away from a multitude of clotting complications as a result.

- I had lots of symptoms of Loeys Diets ( mild- it’s a spectrum disease) .

It’s grouped with Marfans and vEDS, although it’s a very distinct entity.

Please google Loeys-Dietz Syndrome.org for information and support. There is also a Facebook page for information.

I suggest a specialist order a genetic test Invitae Connective tissue disease panel. It tests about ( give or take) 85 genetic variants.

It’s very important to have this tested- it’s autosomal dominant. ( 50% of you children could have it, depending on how “penetrative” the variant is- but that the ball park .

Also- the threshold for surgical intervention is slightly less forgiving with size with Loeys Dietz than with Marfans. Also, the protocols with MRA’s are outlines if positive- head to top of thighs every two years if scans are clean- more often depending on any Abnormal findings of aorta root, brain, etc.

Any variants, ( positives ) and you will need a genetic specialist in this area, and a vascular surgeon for future needs- ( possibly) - depending on test results.

[mozelle]

I have a brain aneurysm in my right ophthalmic artery dg: 8 years ago. Monitored by a neuro-ophthalmologist, and once a year has me do a MRA, (not a MRI) and after 5 yrs. of monotoring, no change so he discharged me. Said if I start experiencing symptoms, bad headache, etc. Head for hospital. My mother had one, her sisyer and her daughter each did, my sister had 3 amd had 2 embolizations and a craneotemy.

Mine is small, 3mm and has not grown.

[Skyllark in reply to mozelle]

do you ever get headaches?

[KellyInTexas Administrator]

please read my comment above re: Loeys-Dietz syndrome.

[Skyllark in reply to KellyInTexas]

I did

[KellyInTexas Administrator]

sorry, was meant for Mozelle