2mm ACoA incidentally discovered 25 Apr 22

Hi everyone! This is my first post so apologies in advance if I do this wrong. Went into hypertensive crisis out of the blue. Headache and vomited. Instructed to go to Urgent Care. Returned home and family member stopped by house. Was concerned at my appearance and prompted me to do Nurse Call. Nurse call instructed me to go to ER. Dr did a CT w/Contrast of head and incidentally found 2mm ACoA tortuous (twisted?). ER got bp down and sent me home with instructions to see GP within week. Requested referral to Neurologist (in Jun). All of this has been very out of the blue. In 60s and never had bp issues until Apr. Lots of questions (Scooby Doo head tilt). Lol. Appreciate any insights!

Anybody have a tortuous aneurysm? What were your treatment options? Recovery?

Good job posting! I have tortuous arteries. It means squiggly. Dr, Quintero -Wolfe, my Neurosurgeon at WFBH taught me that one! Any surgeon who can do AVM repairs can do tortuous, they’re really good at it. I haven’t heard of a tortuous aneurysm but that doesn’t mean anything. There’s lots of things I haven’t learned yet! I did read up on fusiform aneurysms the other day for another member and found they can be twisted inside the blood vessel. I didn’t know that.

I’ve never had high BP either, except when in a lot of pain and when I was in NSICU on Triple H therapy where Dr. Q-W wanted it up to stop the vasospasms.

Ask away Ms. Elle, one of our members will have answers!

Where/what is WHBF?

How does coiling wires not puncture the aneurysm?

I’ve seen coiling can require multiple treatments.

Read the entire Living nightmare post last night. Very heartbreaking indeed. Don’t want my family to go through that.

I go from obsessively thinking about the aneurysm, what I would want family to do/not do to trying to totally put it out of my mind.

Does everyone have a different quality of life after treatment of unruptured aneurysm?

Sorry what is AVM? Learning acronyms.

Sorry, it’s WFBH…Wake Forest Baptist Health in Winston Salem NC, a bit far for you I think… Neurological Surgery | Atrium Health Wake Forest Baptist. I keep forgetting Atrium Health and WFBH merged….Besides Dr. Stacey Quintero-Wolfe, Ms. Ryann Rose is her wonderful NP, wouldn’t trade them for the world they’ve helped my journey so well! Dr. Quintero-Wolfe specializes in AVMs which is Arteriovenous Malformation. Arteriovenous Malformation | Atrium Health Wake Forest Baptist. You can also see a picture of the tangled mess they are here Arteriovenous malformation - Symptoms and causes - Mayo Clinic

Coils can get compacted due to the pressure in the artery to my understanding. In my case, I have a multi-lobed aneurysm. So instead of a smooth walled aneurysm like a blueberry, I have a blackberry type with over 24 daughter sacs. These are rare and apparently most don’t survive their rupture. Dr. Q-W let me share my theory with her Residents when I had the stent put in. My theory is that the coils work their way into the daughter sacs leaving the neck opened. She thought it a good theory, I thought of it as physics :joy:

To the best of my knowledge it’s very rare for coils to actually cause a rupture. If you think of them being like a tangled ball of yarn that a kitten has done a number to that’s how I picture the coils. I found this site Image Gallery | Brain Aneurysms

Ruptures to the best of my understand is caused by a weak wall in the aneurysm. Not all aneurysms have that weak of a wall apparently.

With procedure #2 she inserted more coils and told us she packed them in there to her Residents concern, with #3 she used a ballon assist and packed more coils in. With #4 she used the stent and more coils. She was extremely pleased with the results for the first time! The coils have never gone into my left internal carotid artery (LICA),

Most, but not all cerebral aneurysms are found in the Circle of Willis [Figure, The brain and arteries at...] - StatPearls - NCBI Bookshelf. This site has a nice simple description I think Circle of Willis: Anatomy and function | Kenhub

From what I’ve read from members here, the majority of members who have had their aneurysm occluded without rupture, their quality of life is not effected. But with all things there’s no hard and fast rule. I hope those members who haven’t ruptured and had a repair, come on and share their experiences.

Please remember all our journeys are as different as we are from each other. For me, a positive outlook has held me well, very well! I allow myself a very short limited amount of time to dwell on it and then I go about with my life. This way I honor what I’ve been through but I limit the obsession if that makes sense. Also know not all aneurysms are treated, many members are on the watch and wait program where the surgeon determines that nothing is needed but images. I also hold the belief that we should all have our house in order so to speak. For me it was having an updated will and acknowledge my Higher Power among other things.

Thank you so much Moltroub for your clear and concise responses. The graphics are the best I’ve seen in my internet surfing! I appreciate your support and wish you the best for your journey!!

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If you need any more help with AVMs, I’m an AVM patient (and we have a whole other community for people with AVMs). I’d broadly describe the typical AVM as being a tortuous connection from artery directly to vein.

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Thank you DickD for reaching out to me about AVM. This is all pretty new to me. I’m not sure if I have AVM, the CT just said mild tortuous aneurysm. I also had that said in a chest X-ray a month ago about my aorta. Again mildly tortuous. I haven’t seen or heard anything about artery and vein malformations. But I will ask when I speak to Neurologist in a couple of weeks. Thank you!

Can this group tell me the actual experiences on recovery from angiograms? Any complications e.g. headaches, fatigue, ability to concentrate? How long until able to return to work at 100%. I understand everyone is different and probably have different experiences. A lot of my internet research makes it all sound so straight forward but on here it seems things like actual post procedure headaches are a real possibility and neuros discount that because the procedures they did “worked”. Yet many it seems have chronic headaches that neuros seem to discount. Is that the reality?

I’m sure you’ve got an aneurysm rather than an AVM but sometimes initial diagnoses change, so if for some reason your diagnosis changes to an AVM, I’ve still got a bunch of friends who can help you.

I’m not familiar with aneurysms, so I’ll let others answer your questions.

DickD -absolutely appreciate you sharing info about AVM. You are correct about diagnosis changing too. I had a CT scan a few years back that said I had a normal appendix. That was odd since I had an appendectomy years earlier lol. So I’ve learned to just trust BUT verify all tests/scans. :grin:

I wish you well in your journey!

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We like the doctors seem to use the same word for the repairing of aneurysms and the one where the surgeon looks to see what’s happening because they’re both angiograms. It does make it a bit confusing. The only difference in the two is when the Neurosurgeon is coiling they send the platinum coils through the catheter once they get to the aneurysms and then deploy the wire(s) into the aneurysm. They can also deploy the ballon and stents. They cannot clip it as this is done via craniotomy.

Tortuous is like a mountain road, with lots of turns, it’s not anything near what people like Mr. Richard has with AVM’s. Sometimes the turns aren’t so bad, more like a road along the coast rather than switchbacks. Sometimes arteries and veins are like the Interstate or Freeway (depending on where you live) with pretty straight roads and just some bends. In one of my femoral arteries I have a 90 degree turn! Think of them as the road sign that alerts drivers that the road is windy or the ones that tell the drivers there an abrupt sharp turn ahead. If you peruse the many article here http://neuroangio.org/. You will notice one of the common themes when arteries are discussed will be “except when it’s not”. It’s the alert that not all of us have arteries and veins like the straightforward artist renditions.

When members talk about headaches, etc, it’s usually because they’ve ruptured. It’s the common factor among all of us who’ve ruptured that we deal with migraines long after the rupture has been dealt with. There are also those of us who’ve ended up with some pretty serious neurological issues due to rupturing. Some of us have allergies to the contrast dye and it can be a problem depending on how severe of a reaction we get. This is why it’s very important to hydrate well afterwards to help the body get rid of the dye.

Sometimes, a repair can alter our brain patterns it seems. My second coiling gifted me with Foreign Accent Syndrome, a rare occurrence where one has an accent that others hear from a place not in their country. I’ve had everything from the Philippines, UK, Eastern Europe, Jamaica, etc be guessed. Some people determined that my accent was Hawaiian just because I was born there :laughing: The Speech Therapist at Wake Voice where I finally received the diagnosis said people will think it’s from a place they’re accustomed to hearing accents from.

When I asked my Neurosugeon why I was having horrible headaches, she said she didn’t know. She explained there’s a lot about the brain they just don’t have answers to. You would be simply amazed at what they have learned since my Bio Psych lab back in the early ‘80’s! My Developmental Psych major has come in very handy with my rupture as I was ahead of the game knowing parts of the brain. I had also taken some training at the Agency where I worked a week or two prior. There’s a Psychologist down in Texas that’s been doing a very long study I imagine it’s nearing or passed three decades now with thousands of subjects. If you’re familiar with Psych Statistics, this would be considered a significant study.

When I was taking my university classes, it was believed that any damage to the brain after age five was irreparable. He has proven that no matter our age, our brains can keep repairing. It’s simply a matter of the neuro transmitters finding a new pathway. When Dr. Q-W said after my second repair that my brain was as good as it would get, I told her she was wrong. She said prove it lol, so I have! For me, it’s keeping my brain active and following her headache rule - hydrate, eat protein, hydrate some more, rest, hydrate some more. When her husband has a headache the first thing she asks him is “What have you eaten today and have you hydrated?” Sharing this with me has allowed me to remember. I can remember better with personal funny stories she has discovered. Even people without an aneurysm can feel fatigue, loss of concentration, etc.

Complications with an angiogram can be varied, it depends on the person. The first thing your doctor will go over is the risks of the procedure, starting with anesthesia and the actual procedure. The day of your procedure, the Anesthesiologist will come in and go over the risks again. Don’t be surprised if that person is not in the operating room with you. The common practice is to have a RN Anesthetist to be next to you. I’ve had many a good one by my side!

My complications have been allergic reaction with the Resident on call saying no one is allergic to dye. He was the same nitwit who didn’t put enough pressure on my femoral artery during the angiogram that day. I thought I was urinating all over their new table and kept apologizing to another Doctor (Shaw). Dr. Shaw reminded me I had a catheter but fortunately he looked and immediately called Dr. Q-W back. She’s a short small woman who must be strong as an ox. She threw the tall nitwit and did a handstand on my artery. I had a nasty hematoma and couldn’t do much of anything until it healed which took months. The more angiograms, the more sensitive to the dye and anesthesia I’ve become. Fortunately, I learned relaxation breathing back in 1976 and have practiced it so much that it’s just how I naturally breathe.

Generally, for me, there’s an angiogram to see what’s going on, then one a week or so later to do the repair and then the six month follow up. I’ve had a couple others thrown in for good measure. I think it’s about a baker’s dozen or more since 2013. Because I went into severe anaphylaxis the last time, I’ll never have another angiogram unless it’s to save my life. (Happy dance!). This doesn’t count all the CTA’s I had whilst a guest in NSICU for my rupture.

I’ve written too much again. I’m really hoping other members come and share their experiences. Remember the ones that are members who are no longer active are the ones with the many, many success stories. They don’t need our support anymore.

Thank you for replying to me again with more clarity and information about all of this new journey. Hopefully others will also read your and DickD responses and they too find answers to their questions. Thank you again and enjoy the holiday weekend.

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Question…How common is it to have other aneurysms in your aorta, or other organ(s)?

I really don’t know how common it is with any definitive statistics to show you. What I’ve learned from other members here and from my Neurosurgeon is that if someone ruptures there’s a stronger possibility to have another aneurysm somewhere else. I’m not sure what the correlation is, perhaps just because of having one weak wall, there’s a presumption there could be another. Aneurysms can of course show up on any artery in the body. A couple of years ago or so, my PCP had sent me to the urologist for a minute amount of blood. During a conversation, the urologist was explaining something, and I asked if she was talking about aneurysms. She was and to the confusion of the Resident that was there visiting, we both started laughing. We had to explain I already had experience with aneurysms lol