Whats next? [I am 38 y/o, Survived rupture, + coil & stenting of 3 unruptures]

General
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Hello fellow survivors…

My name is Angela. I am a 38 year old young lady from Los Angeles, working in the TV Production business, and saving stray dogs on the side. Stress is part of my life, always has been, but working hard so that it no longer will be.

I had “the worst headache of my life” back on December 17th of 2016. Rushed to the hospital, doctors found a “Basilar tip aneurysm measuring 4.2 x 3.7 x 3.2 mm with a neck measuring 2.3mm” that had ruptured. 2 other unruptured aneurysms were discovered during this angiogram. (And later a 4th aneurysm, which was overlooked at this point in time, was found).

I survived the rupture with only double vision for 2.5 months following, as the only issue. That did correct itself.

As of this date, September 25th, 2017, I have endured 5 surgeries in total to coil & stent where needed and I am happy to say I am almost as good as new. My last was just a few weeks back, and I am back at work today living my life as I had prior to all of this mess.

I know that further angiograms will take place to check the work done on my brain, (the next being in February 2018), as well as to monitor any further possible growth of new bulges, but for now, I am coiled and stented, and doing well.

I do have a few questions that only those who have been through this may know the answers to:
1- What do I do now, or more importantly, what DON’T I do? I feel like I need to be mindful of things, but I am not sure what those things are. When I am tired, can I have a cup of coffee without putting myself at any risk of further growth of future bulges? I know I can no longer work out at the gym like I once did, as I was told I should no longer do things that strain or put pressure on my head, but where is the line to not cross in that regard?
2- Memory Loss… I lose my train of thought, or I forget a simple word often times now. I was once sharp as can be, particularly with language skills… but I find myself losing my words, or forgetting where I was in a story, OFTEN now! Is this a side affect of all that happened to my brain?
3- What are the worries that come with coils and stents? Can they move? Shift? What should I be doing, or not doing in regard to monitoring the equipment now installed in 4 different places on my brain?
4- Do any of you have more than one aneurysm? I have been told often times by my surgeons and care takers how “unusual” it is to have 4 aneurysms. (As I mentioned, 1 ruptured, 3 did not and are now mended). Hypertension and high blood pressure run in my family, and one cousin on dad’s side did suffer an aneurysm in the past, so this is genetic for me I BELIEVE, but even so, having 4 aneurysms, particularly at my young age of 38, apparently seems to be unusual. Wondering if any of you have the same experience.

Thank you for any info you can fill me in on with all of this. This is such a wonderful forum for people like us and I am thankful to have found it.

Appreciate you and I wish you all well!!!
WE SURVUVED! =)
<3 Angela

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Before my aneurysm was coiled I started taking olive leaf extract for another issue. By the time I had the procedure the aneurysm shrunk from 8 mm to 7.3mm. Coincidence? I have no idea, but I think it does make sense to at the very least research supplements that strengthen veins and arteries. I am going to start taking it again, now that I am only taking a baby aspirin. I stopped, because I was taking 325mgs aspirin and plavix and I could not be sure of the outcome of mixing so many blood thinners.

There is also a gut brain connect you might want to investigate. We are run by those microbes in our gut. Research the vagas nerve, too.

I drink coffee, but it’s generally decaf. I only drink the powerful stuff when I have a headache. Why take risks?

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_Yes, the coils can shift, which is why there are repeat angiograms, to monitor the coils. My aneurysm is not fully occluded, but nothing inside my aneurysm has changed in an 18 month period, which must be good enough since I do not have to repeat the angio until Aug. 2019. Try not to think about it. Your only control is following the doctor’s angio orders and living well.

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**It is in your best interest to ask your doctor about exercise, we all have different issues and our doctors know the terrain better than we do. I am not going to ever do anything that whips my head around, but no one told me to avoid doing this. It’s just me being cautious. **

I feel lucky, because I just discovered via her death certificate that my grandmother died from a cerebral hemorrhage at my age! I was always told it was a heart attack/stroke, but now that I know there is a family predisposition I am going to address what I can through, diet, exercise and supplements.

I apologize for responding in multiple posts. I am writing on a tablet and it’s hard for me to refer back to your post.

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Hello, I am 65 year young gal from Wa state. Two aneurysms were discovered in 2003. i had a brother who had an aneurysm rupture in 2002. He survived that but died 5 years later of cancer. I had my larger aneurysm cured with a pipeline stent in 2011 at OHSU. 21st person to have that procedure there. So that one is cured. Went back for blood flow check 8/2017, and to check for more. Flow was good…but 2 more aneurysms. Had those two cured with a pipeline stent. Two for one…what a deal. So yes, I am multiple and genetic. My brother was 46 when his ruptured.
After the first pipeline was put in a did pretty good. Wild crazy headaches for a couple weeks but then good. Back to teaching 2nd graders! No stress there!!
This last pipeline procedure was different. The procedure went grand but major headaches, no sense of taste even after 16 days. Both wrists feel like I have carbol tunnel disease. Not fun at all!!
So after I pretty much went back to my normal life. I walk 2 or 3 miles a day. Try not to get mad or overly stressed. I have very low blood pressure so for me that’s not an issue.
After a LOT of thought and research on this topic makes me think:

  1. If sneezing, straining to poop, coughing or being surprised may cause an aneurysm to rupture then I really can’t worry about any of those. That would make you go crazy!
  2. So figure out what you can control and work on improving those areas.
    A. Smoking
    B. Caffeine
    C. Stress
    Trama/Drama
    D. Type A+ behavior
    I try to see it as a positive as it helps me stay focused on controlling stress…Americas #1 killer. Hoped this helped. Chelan4
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Very good post! Some things you can control, others not. Good to know which is which.

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I was diagnosed with an unruptured aneurysm and only through reading my angiogram did I see that there was also a diagnosis of FMD or Fibromuscular Dysplasia. This artery disease causes multiple aneurysms and is often present in multiple arteries. I traveled to Cleveland Clinic to see a specialist in this area and will continue to follow up there every year. Something you may want to research.

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Thank you so much for your responses. I am so appreciative of this community. Reading through everything now. I am so glad everyone here is alive and well. We survived and I am so proud to be able to speak with you guys about these things. Thank you!!!

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I just read up on Olive Leaf Extract. Boy does that stuff pack a healthy punch for our arteries and blood pressure. I suffer from Hypertension, and this looks like a wonderful way to open up my vessels. Thank you for this suggestion. Will be calling my doctor ASAP to double check that I can go on an Olive Extract regimen from here forward. Thank you for the suggestion.

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Hi Angela, I read your post and comment as follows, I have 5, 1 basilar coiled and stented and 1 opthalmic again coiled and stented, the other 3 are 2 right side MCA and 1 left side, these 3 are untreated as they require open brain surgery and I am not going there.
I am 63 and since diagnosis ( which was and incidental finding) nothing has changed for me in life style, I go to gym daily and use light weights for tone, not body building as you do not want to strain with heavy weights!
I still drink red wine daily, so my life style has not changed in the past 4 years since diagnosis, I was in International Trading in the past but have curtailed this due to long hours on planes worldwide, I live in the UK and still travel to Europe by plane 3 times annualy.
The bottom line being, I now know that they are there, I watch for stress etc but otherwise my life is unchanged.
I go for an MRI twice a year, in fact I have one in 2 weeks time, but otherwise life continues as usual.
My philosophy is business as usual, as stress begets anxiety and that is not good, so why worry?
I started up the BAF UK site a few years ago, I hope my input helps you alleviate some of your fears. Kind Regards Martin ! XXXX@XXX

(email address removed by Modsupport for the member’s online security. Please share contact information via private message by clicking on the person’s avatar, and then on the blue message icon.)

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Great advice! I have 4 aneurysms. 3 treated with the pipeline stent. One untreated, That one we are watching right now. Has not grown in 13 years. When I need to, I will deal with this last one.
I walk 3+ miles every day. And really enjoy every day. I just got a new puppy. That was the best treatment in my recovery. Keep us posted on what you decide. This journey can be a long and scary one. Please know that you have friends here to help you out. Take care

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