Hi everyone, thank you for the warm welcome, esp. @Moltroub!
So glad to find this group, I feel like I’ve been swimming in a sea of statistics and clinical papers for too long (1.5 years) and it’s just so much more helpful in some ways to read the real life experiences instead.
My husband was diagnosed with a large MCA aneurysm on one side in Oct 2022 and did an emergency coiling because it was accompanied by a thunderclap/ sentinel headache. Doctors we have been to across India/ Singapore and the UK have varying opinions on whether there was an actual microscopic bleed or just a warning headache because of the size of the aneurysm - 11mm. I say doctors (plural) because we are from India and this happened on a work trip of my husband there, he was initially treated by and Indian doctor, we live in Singapore and have long term doctor here who does his follow up since then and my best friend is a doctor in the UK and was the one to insist he go to the emergency room and wanted us to have a third opinion from the UK!
The ‘weird’ part of finding the second smaller aneurysm on the other side - again MCA - was that it was never brought up or ‘seen’ as far as we could tell in India when he first did his scans. It was only discovered after he had the coiling of the larger aneurysm and we were back in Singapore. We called the original doctor in India to check whether he had in fact ‘seen’ the other one when he treated him and he gave us a rather non-committal answer to say they didn’t want to use too much dye during the procedures (angiograms and coiling) so they focussed on only the side which they knew had a large aneurysm. Hence I found the discovery of the second one a ‘bit weird’ - it was also hard for us as a family, we found the discovery of the first one pretty traumatic (including my daughter and I rushing to India overnight to make it for the emergency surgery) and just when we thought it was behind us we found there was a second one - it was about 3 months later.
The second one is smaller 2-3mm but it’s fusiform and our doctor in Singapore wants to wait and watch as it’s more complex to treat - coiling wouldn’t work - and would involve a flow diverter and all the long term blood thinners that go with it.
We assume my husbands aneurysms are genetically influenced because he has an aunt who had an AVM and an uncle who died unexpectedly in his 40s of a stroke with hemorrhaging in his brain - which we assume was an aneurysm rupture (but can’t be sure).
All said and done we are grateful to have found out when we did and we all live a relatively normal life apart from my husband occasionally getting headaches when he’s very tired or worn out (which tends to send me into a panic) and seeing his wonderful doctor in Singapore every few months.
So that’s our story! Would be interesting to know if anyone else discovered a second aneurysm after their first and wondered why it didn’t come up in earlier scans.
Thank you so much for starting a new topic Nek! I thought a 60 mile helicopter ride and BH having to drive with our best friends was a lot, but gosh your travels have us beat! I’m really happy to read your UK doctor friend was on the ball. Isn’t it amazing how we, as survivors, had a bunch of help from others?
I understand why you would think it “weird” thank you for clarifying. I think that’s weird too as in my experience, every time I’ve had an angiogram, Dr. Quintero-Wolfe looks at both sides of my brain, and I’m allergic to the dye, very allergic. She has told us it’s common for another aneurysm to form and she needs to make sure I haven’t developed another one. The surgeon in India should be able to send all your husband’s images to the surgeon in Singapore, technology can be a wonderful tool. But the MRI/A may not have caught it, if a CT was used it could have missed it. From my experience here in the States, they say they use the CT when a patient comes in as it will catch a bleed faster than an MRI. I had one tech tell me the MRI didn’t really take that much longer. When BH had an ischemic stroke, the Neurologist explained the CT was to rule out a bleed so they could know if they could administer the TPA. TPA would kill someone who had a rupture.
My cousin went to university with a woman who became the Health Minister I think it’s called in Singapore decades ago. He had gone to university with her and her husband and went every year to visit up until his demise. Every time we’d see him, he was always sharing what she had accomplished. I’d tell him he sounded like a proud papa.
Stents do require a blood thinner. I had a Neuroform Atlas Stent installed on my last procedure. Started on Plavix, before the procedure, couldn’t tolerate it well after a few weeks and was switched to just the 81 mg aspirin for the rest of my life. @oct20 taught us about a test they can do for Plavix intolerance and there’s another medication that can be used, I forget what it’s called. Members have had to take the Plavix or the other for different periods of time, but it’s not usually that long. Aspirin does become a part of our daily meds.
Don’t forget that your daughter and any other children should have an MRI/A to rule out any aneurysm due to the familial genetics. It’s one of the first things Dr. Q-W told us to tell our children. We don’t have any, so she told us to tell my siblings and their offspring. Interestingly, my remaining brother and a nephew brushed it off. A year later, my brother had an ischemic stroke. I’ve often wondered if he had gotten images, if they could have seen what was coming down the road for him. But my nieces were told there wasn’t a medical reason for them to have any imaging and insurance wouldn’t cover possible genetic links. One of my great nephews was able to have one immediately but he has some other brain issues that are being treated. Health insurance is a funny thing here. Some of our members have family that did receive images, so perhaps it’s just how the order is written for pre-approval.