My brain aneurysm saga: As in my prior posts, I was diagnosed with a 3mm brain aneurysm in Sept. and was scheduled for a 'cerebral artery angiogram' for Nov. 10-it is a diagnostic surgery done in hospital--they catheterize you through groin artery and all the way into brain and inject dye--The neurosurgeon had to get certification from 3 of my doctors--Cardiologist, Internist, and Hematologist (the one who treats me for the Factor V and APS.) Well, it was all set up and when I went to the hematologist for certification, he refused to approve until he spoke to neurosurgeon---After conferring with wach other, they decided it may be too risky, so instead the neuro had me do a CTA (cat scan angiogram) where they inject dye into your arm--much less invasive.
I had the CTA Nov 4, and then saw the neuro, and then for a second opinion with another neuro--each one is chief neurosurgeon in their respective hospitals. It was confirmed that it was 3 mm and the opinion of both is the risk of the angiogram and surgery is very risky due to my 2 blood conditions, my hypertension, and my atrial fibrillations. They said I would have to go off warfarin, could get blood clots, could suffer a stroke, etc. So they both decided the risk of the aneurysm erupting is less.
I have to go every year for an MRA (magnetic resonance angiogram) and monitor it. If it grows, then they would consider the next step.
My children have to be tested per both doctors--they said it is familial--My grandmother, mother, aunt, and sister all had aneurysms.
My hematologist is very wise for not approving---I owe him.
Mozelle
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Hi Mozelle, I'm in the same boat, although I have two of the buggers! I'm due a six month follow up scan in the next week or so. I was told the risk of rupture of one of them is 2.5%. It's the stats if one does rupture that worry me! I do try not to think about it all too much but sometimes it hits me and I feel like a walking timebomb. Keep in touch xx
I quite understand you feel that way. Sometimes it is better not to know the risks but I hope we are well looked after and that the doctors do a good job. It is dangerous to live. Yesterday I was almost run over by a cyclist in a hurry on the pavement! I wonder if he had hit me what had happened.
Good luck with Everything from Kerstin in Stockholm. This city has changed the last months. I speak 3 languages besides Swedish (from school that is) but out in the city 50 % at least speak languages i have never heard and do not understand.
Yes, it is scary! Interesting, since I was diagnosed 2 months ago, I wake up with what I call an "imaginary headache"--I guess its stress and tension playing a part. One of the surgeons told me that when my sons and granddaughter get tested,( they live out of state) he wants copies of their reports and the disks sent to him so that he can also read them. He said he is starting a family file on me. I realize that this is the way that doctors do research and come up with statistics, etc. So far that I know, 3 generations in my family had aneurysms. Maybe his research on my family will help others.
Were you given any instructions besides monitoring them? Do you have any restrictions? I wasn't given any. I was just told that if I get a headache, the "worst headache I ever had" to call 911 and go to emergency room.
You're right!! A time bomb.
But I am going to live my life just as before diagnosis, and KIRSTIN, I am so glad that the bicyclist missed you. In a split second, anything can happen to any one of us, so we just have to live our lives normally.
Hi, yes I was told the same about the worst headache ever - straight to A & E if I experience that! No restrictions either. There was a little worry as my specialist wanted my INR much higher than it is now and we had to wait a long time for the neurologist to confirm that would be ok. I've read to avoid stress, high blood pressure, etc.... And I'm not going on any white knuckle rides!!!
Thank you for taking the trouble to summarize all this, clinicians have to make very difficult decisions and it is helpful to see this working process being weighed up, really good that they were so keen to look at the whole family. Keep well, and thanks. MaryF
Wow, I am so sorry to hear that you all have this same trouble but I thought I was alone in this. I had never heard of anyone else with these same issues until now. I have three of them in the Y, circle of willis, and have had 3 Cerebral angios. Not fun and I have vowed to not have another. The first two were fine but due to a drug mix up the third was very painful and has left me very fearful.
At any rate, yes, I do have restrictions but can't say they are life changing. I scuba dive and am not allowed below 20 feet. I am also a pilot and am no longer allowed aerobatics. So simple stuff really.
What they did with me was switch my blood thinner to one that could be controlled, then not have me go off of it. Yes, there were risks but they felt it was worth it.
I too am the third generation and have had my daughter tested. She is clear.
I am sorry to hear your kids won't get tested. Perhaps talk to them individually to find out why? I found out with my brother, who also won't be tested, that it is the fear of the dye injectuhe fears. My sister just doesn't want to know.
My daughter did it right away as she wanted to be sure any children she had in future would be clear.
We have seen a total of 6 family members with this, you would think there would be no need of convincing.
I think just to give you peace of mind as a mother would be enough. I do wish you good luck with this!
The test they want them to have is an MRA which is done without dye. So, its not the dye they're afraid of--it's the thought that if they have an aneurysm, then they would have to have surgery---Sooooo, I have to gather them together and have a long talk with them. I can understand scary, but I will work on them.
Yes, I'm sure they will come around. After all, what is scarier than having one rupture and living with severe mental issues? You don't always die and it just seems they need to learn a little more about all sides of this.
I'm not sure I can convince them. It is still new to us (my diagnosis) so I think they need time to "digest" it, and do some thinking--hopefully, they will see the risks on both sides.
Omg Thank The Goid Lord you have the best Doctors you cud possibly have! I too have 2,blood disorders! It's called Polycythemia Vera! My blood so thick from that they called it sludge! It's precancerous! Weird dis order it can go to Leukemia then revert bak to Ploycythemia which is opposite of leukemia! I make too much RBc's WBC's ant Plasma and use to get a pint of blood a week removed! I'm in remission now only to be diagnose with this 3 weeks ago! I'm overwhelmed! Also lost my leg this past January! I'm so ELATED THAT YOUBHAVE THE BEDT DOCTORS AND I HOPE AND PRAY FOR YOUR CONTINUOUS WELL BEING!!! God Bless Yoy!!!
What a scary ride you have, what with not knowing when this can recur. Was the unfortunate loss of your leg due to the blood condition? I also hope and pray for your continuous well being!!!
Thank You my dear! Yes I lost my leg due to APS! I'm from New York, USA! I'm unwell every other day and very overwhelmed with this duds ease! I just don't no Wat to expect? The body aches, joint pain, relentless fatigue! My quality of life has changed drastically! I don't like the way I feel and hate feelin inwell! I wonder if once I'm stableized on blood thinners, will I be feeling better! Nice to talk to you Mozzelle!
On 02/20/2011 my birthday I had 4 aneurysms and a stroke having a brain hemoraging . It was one vein with branching four veins from a single vein! I was lucky surviving 11 hours of surgery at University Of Maryland in Baltimore. I have been on warfarin 2.5 MG and told I need to take it the rest of my life. It has been a struggle not being allowed to eat green vegetables! Avilio54
This is an old post you have answered and I wonder if you have got our illness on this site which is Hughes Syndrome/Antiphospholipidsyndrome. We all have too thick blood and must have anticoagulation all life.
I wonder who told you you could not eat green vegetables. Of course you can, but you have to be aware of the fact that they contain a lot of K-vitamins that will lower your iNR (some of them like broccoli and brusselsprouts dramatically). I eat them every day but always the SAME AMOUNT and make notes when I change my intake. Very important.
Susiebelle my post is from 2 years ago. I am surprised to get this feedback now, but here it is---there is a family history of brain aneurysms and so my cardiogist insisted I get tested. No symptoms at all. So the initial test is an MRA (magnetic resonance angiogram) which shows the arteries and that's where it showed up. I go for this test every year, and it hasn't changed so they monitor it.
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