Neck Aneurysm - Intro, Journey and Symptons

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Hello!

First of all, thank you for letting me join this community. I have spent some time reading some posts and I love the warmth and support everybody provides. I would like to share my aneurysm journey in order to help as many people as I can going through the same “adventure”, plus I have some questions to the community about symptons. Here we go!

I’m a male in my thirties. One day I started hearing some loud blood flow noises in my right ear and that resulted in imaging and the confirmation that I had an arteriovenous fistula in my right vertebral artery (behind the ear). That AV fistula was redirecting all the artery flow to a vein, which created a large aneurysm (5cm x 4cm x 3.5cm). An angiogram confirmed that my right vertebral artery was indeed not providing any blood to the brain and the other ones were compensating. It also confirmed that my “broken” artery was unusually large (10mm in diameter) and was making all sort of weird snake shapes and forms.

We decided to fix the aneurysm before giving it the chance to rupture, with the idea of recovering my right vertebral artery. Neurosurgeon placed 37 platinum coils inside the aneurysm in a 5 hour surgery and shortly after, we confirmed that the surgery did not go as expected because the aneurysm couldn’t be fully occluded and it made a brand new noise type 1000 times worse than the original one and now 24/7 in my head. It was driving me absolutely inside and I could only be somehow comfortable with a white noise machine.

After evaluating options, my neurosurgeon decided that the only way to fully fix this would be to sacrifice my artery (it wasn’t working originally to begin with). 3 days after the first surgery, another 5 hour surgery and 30 more coils. During this second surgery, there were many complications with anesthesia and I ended up vomitting and aspirating it mid procedure. I almost died but very thankful for the quickness of all the staff.

During recovery, the places where they placed coils started hurting A LOT. Like 8/10, 9/10 pain level. I couldn’t handle it and I was given opioids, which made it “slightly” more tolerable. I’m not a big fan of opioids, so I only took them as a last resort.

The crazy and unusual thing that happened (and it seems to be unique to me, per my neurosurgeon) is that I developed a fever that lasted for 7 weeks. Dozens of tests were run in that time span, and everything confirmed that I did not have an infection anywhere, but the fever would rise randomly and spike during the day (specially the evening). It seemed to be “Post-Coiling Syndrome”, but taken to the extreme. Eventually the fever disappeared, but I lost 20 lbs (that I did not previously have to lose :slight_smile: ) and my body was extremely weak.

All of this happened 5 months ago. I have re-gained weight and gone back to work. I still feel some occasional sharp pain in the aneurysm area, but imaging has confirmed that everything is healing great and that my right vertebral artery doesn’t work anymore, as expected.

My situation is kind of unique, but to my fellow aneurysm patients, how long did you have pain after your procedure(s)? I also feel a weird pressure in the head sometimes. It is difficult to put in words, but it feels like pressure in my ears (like hearing some time of machine far away). It is accentuated with specific neck movements (like chin to sternum, for example) and I have noticed that weird weather changes (I live in Texas and the weather can change drastically in hours here) make it worse. My neurosurgeon did not give it importance, he based his comments solely in imaging results and he was very happy with them, but I definitely feel new things that I did not feel before attempting to fix the aneurysm. Is there a name for the symptons I’m feeling? I have read that it could be barometric headaches and that the body takes time to get used to the new blood flow pattern post aneurysm, however my artery never worked to begin with so my brain has not been impacted (to the best of my knowledge).

I appreciate everybody taking the time to read through this post. Don’t hesitate to reach out if you have any question and looking forward to hearing back from some of you.

Thank you!

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April 5 2026 newest members
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Thank you so much for posting and sharing your journey! I do love to read stories. We don’t have many members who have AV fistulas so for the others here’s what I found although you’ve described it really well! https://www.mayoclinic.org/diseases-conditions/arteriovenous-fistula/symptoms-causes/syc-20369567

I think your artery that you shared is making all sorts of weird shapes and snaking might be called a tortuous (squiggly) artery. All the ones my neurosurgeon has been in have been called tortuous, she also gave me the layman’s term squiggly. None of mine read the book and they’re like a wandering river. It’s just a guess, I’m by no means a medical expert.

I ruptured with a small (5mm multilobed aneurysm). I had headaches for months, might have been a couple of years. I did get a procedure recommended by my neurologist which stopped what he called atypical migraines immediately, went for the second that hurt like the dickens several months this after that. I told my Neurosurgeon I wouldn’t have another and she was happy about my decision. It’s what led me to the understanding that neurosurgeons attempt to fix the problem, neurologists deal with the aftermath.

I’ve got issues with anesthesia and the dye of which I’m allergic to. Each procedure except for the stent brought something new to my retinue of issues. When I woke up from the stent, I felt great more like my old self than at any other time. It also didn’t set me back in cognitive function like all the others had, even the diagnostic angiograms. It didn’t reverse my brain damage but I’v been able to get help with those through PT and ST. I’ve got no clue to how many coils she’s placed in it or what length or size. I just know it’s a lot. One of the repair attempts she had told us the Resident was going to stop but she told the Resident to keep them coming and she “stuffed them in”. Her words. My coils have all been platinum alloys, fortunately I don’t have allergies to nickel or tungsten. We have had members who have nickel allergies.

For post coiling syndrome which I had to look up in all honesty, I found an article from Pubmed the only one that came up in the search https://journals.lww.com/brci/fulltext/2023/09020/postcoiling_syndrome_including_headache_and_fever.3.aspx It seems to be a newer term and I do hope the medical community starts tracking them. Thanks for teaching us something new! Seems most members here get the standard reply from neurosurgeons it wasn’t something they did.

Barometric headaches can be a form of migraine so best to get a neurologist and talk with them. One thing the neurologist told me was to no take OTCs more than 3 times a week as they can cause rebound headaches. I have one specific spot on my left side that if I get a sharp pain there, it concerns my neurosurgeon any others do not and I’m to make sure I stay hydrated, eat protein, hydrate some more, repeat, rest and repeat. Make sure you’re staying hydrated! Stress can also effect us and since you’ve been perusing topics, I bet you know what I’m going to suggest next, relaxation breathing!

Thank you again for both starting a new topic and teaching us something new!

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Hello @Fistulator and welcome!

Man, 37 coils?! I only had 3 for mine so your brain is worth far more than mine! :joy: Still what an amazing story you have been through, and I agree with you that I feel so fortunate to actually be alive - life is truly a gift that we do not appreciate until we almost lose it!

I do not have the experience of the pressure and headaches that you did, so - like @Moltroub - I tried to do some searches as well, and I stumbled into this old post on this very website that may e of some interest.

That lead me to do some other searches on our website for any other possible topics:

There may well be others, I just did a simple search for “pressure” and stumbled into those. Although anecdotal, at least you can get the sense that others have had issues with pressure post-coils, so you are not alone!

Like @Moltroub one thing I learned from my journey is that in addition to asking your neurosurgeon, it may also help to speak with your neurologist about it. Please don’t misunderstand, I absolutely ADORE my neurosurgeon as he saved my life repeatedly! However, his skill and expertise is in being a surgeon, whereas my neurologist focuses on my overall long-term brain health and - in my personal opinion - is an important part of the team.

Thanks for introducing yourself and teaching us something new. It’s so good to have you with us!!

Fin Whale Fan :whale:

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Welcome! Wow, that is quite an “adventure”! I had a 7mm anerysum on my left internal cartoid artery that was discovered in 2017. My original symptoms were dizziness and funny enough pressure in my head and what I called whoosing in my ear. In the beginning the doctors told me that these symptoms weren’t related to the anerysum. I was treated for vistubular migrane for several years none of the treatments helped. I learned to live with both until 2023. I moved from Colorado to Arizona and suddenly my symptoms improved greatly. Last year upon my annual angiogram to monitor the anerysum it grew to 17mm. In August of 2025 I had a full metal jacket stenting and as soon as I came out of anesthesia in the recovery room the dizziness and whoosing was back. My neuro sent me to vestibular pt again, I refused trying any of the drugs that didn’t work the first time. I am still dealing with this although I am not experiencing any pain. If you find any good answers please let me know. :grinning_face:

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Welcome @Fistulator -

I’m glad your neurosurgeon says the aneurysm occlusion is looking good. 37 + 30 =67 coils!

I also have a brain aneurysm in my neck - internal carotid artery pseudo aneurysm before it enters the skull, 31 mm in the widest dimension so “giant” but much smaller than yours. 21 coils I think? I would have to look.

I had post coiling syndrome as well, inflammation, edema, swelling. Steroids helped but also did all the steroid things.

Yes to pain in the area of the coiling, especially with certain head movements. Yes to the weird head pressure, and adjusting to the new sounds of blood rerouting ways it had not been moving before.

If you haven’t asked for a physical therapy referral, that might help with the movement associated pain. It was helpful for me and there are exercises I still do every day.

I was pretty uncomfortable for 18 months post procedure. Things got fairly better 18 - 24 months post procedure. I have set backs whenever I have an angiography. My neurosurgeon said I can have a break this year and my five year one will be summer 2027.

So at almost three years post coiling, I feel a lot more normal. I hope that is not too depressing! I don’t have daily or even weekly discomfort anymore, but do head and neck PT exercises and also have to watch what I do. Last fall I was doing plank again for the first time since surgery and it caused issues.

Let me know if you have any more specific questions or anything I missed.

I’m glad the procedure was a success.

Cheers,

@Shinykai

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Thank you everybody for taking the time to reply to my post! There is uniqueness in all our situations but I find comfort knowing that I’m not alone.

@Shinykai, our symptoms are (or have been) pretty much the same. One thing that I forgot to mention in my original post is that in the search for the cause of the high fever, all infection markers came back negative, however my inflammation markers were through the roof. ESR and something else that I do not remember. My neurosurgeon was shocked by my symptoms because he placed more coils on other people, but none displayed the same fever for weeks.

I think neck aneurysms are tricky with movement due to the location. Maybe I’m not doing anything at all and I can feel where the aneurysm is (was?) and some sharp and mild pain. Pain is not constant, and at times I feel like nothing has happened at all, but these pain reminders bring me a bit down. I’m thankful to be alive, but honestly I just want to put everything behind me :slight_smile:

@Shinykai, surprisingly enough, I’m not having major problems doing light workout activities, including planks. I started doing some light to moderate core workouts few weeks ago and I can handle majority of the moves without much problem. I’m not pushing myself very hard, but hoping that you can go back to all type of exercises without pain soon.

Stress is a problem, though. It’s difficult to explain, but I can “feel” stress. It brings headaches, pressure and some sort of floatiness to my body. This never happened before my surgeries, so I don’t know it will be a permanent symptom. Only time will tell.

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Hi Fisulator,

I am really glad you have joined our community and a very warm welcome, and I hope you continue to improve, I have not been able to go back to work, but instead have taken early retirement. I am just coming up on my ten year Anniversary (sic).

I am in my late sixties now and have been able to travel with my wife, which seemed an impossible dream when I got out of hospital on my wheelchair after a seven and a half month stay (six and a half in a coma). But I have worked hard in the gym, tried to stay positive, and am thankful every day for the medical staff and my wife.

To answer some of you questions, I had severe pain for several weeks post-surgery before it was decided to put in Ventricular/Peritoneal shunt, which fixed the problem. I have had Tinnitus for many years (because of loud music by being a club DJ (so self-inflicted). I too “hear” machinery noise far away, as well as a constant high pitch noise like a badly tuned FM radio, but I just ignore them. No problem with weather. I have not noticed my brain “being affected” although I can only concentrate on one thing at a time, hence retirement (I was a consultant who juggled many projects at to same time), still seem to have my memories, can talk, think, plan, love and although my balance is off I can walk, cycle my trike and work out.

Once again welcome

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However, we do have a sister support forum for people with arteriovenous malformations, arteriovenous fistulae and other arteriovenous anomalies rather than brain aneurysms over at

You will find others with pulsatile tinnitus, including me and I can say that post closure of my DAVF, I had weird sensations simply from brushing my hair or putting on my glasses or walking for a couple of years after closing.

Best wishes,

Richard

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