Neck Aneurysm - Intro, Journey and Symptons

[Fistulator]

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 ) 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!

[Moltroub]

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!

[FinWhaleFan]

Hello @Fistulator and welcome!

Man, 37 coils?! I only had 3 for mine so your brain is worth far more than mine! 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.

Pressure in head and headache after pipeline stent

It has been 90 days since my embolization. My right opthmalic nerve was stented. And I am getting some whooper of head aches, where I just sit and cry. I did suffer from migraine in the past but that was years ago…now I have other rare Nuerological issues that have presented them self’s… called HSP heredity spastic paraglea. And some spinal stenosis in my lumbar back. I went from a marathon runner and an extreme enthusiastic to someone that is unable to walk around around the block. At what p…

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

Barometric Pressure Headaches

Hi there - Wondering two things for those of you who may suffer from barometric pressure triggered headaches/migraines post-coiling or rupture: How much of a change in the barometric pressure does it take for you to be triggered? What is the best form of relief you have found? I was not a frequent headache sufferer before my head decided to explode - so this is quite a challenge for me. Thank you!!

Head pressure, high blood pressure

Hello Beth61! I had a stent placed for a small brain aneurysm in Dec. and this resulted with head/neck pain. It decreased but I still feel pressure in my head and experiencing neck pain. Returned to to work after 2 weeks but my blood pressure spiked and have been on medical leave after several attempts to return to work. I have learned that it takes a very long time to heal. So get more rest if your work allows it. My blood pressure has decreased at home with relaxation and no stress. Also an…

Sinus pressure

Hi Everyone, I'm wondering if any of you get the pressure headaches and/or sinus pressure post-coiling. I know that others have said that they have headaches, but the pressure in my sinus concerns me. I had two coilings a few months ago, in late July.I hate to keep calling my neurosurgeon's office with my anxiety questions yet I do worry. It's hard to feel like I'm walking around with a time bomb in my head! At the same time, I am counting my blessings and making the most of my days. Judi

Pressure Headaches from Weather

Hi Jemima, after having an aneurysm burst myself receiving a coil via an op, (not realising I had one until it burst), and still living with another aneurysm on the opposite side of my brain, I understand your issues. Once I came out of hospital I had very bad headaches, and a stiff neck, felt week and not myself for months. Certain senses of mine seemed to be working over the top, and that I was more susceptible to changes in atmosphere, frequencies in the air, pressure, noises and specific p…

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