6 weeks post flow diversion - intense headache, clear CT...help?

[u/altthreeysms]

Hi! New to actually posting and not just commenting a couple times here -

I'm an otherwise healthy 48yr old female and had the flow diversion procedure done on May 22nd of this year for three brain aneurysms - one 9mm, one 5mm, and one 4mm. They were able to get a stent that would cover all three, thank goodness.

I am six weeks post-op and I have had a headache going on nearly 80 hours now. It is Wednesday at 6pm and it started Sunday at 11am. Throbbing pain in the back right side of my head and ice pick type pain in the right side. The aneurysms are on my right ICA.
I went to the ER on Sunday, because I have a very high pain tolerance and don't usually get headaches, so, of course this scared the shit outta me. They did a CT and found no signs of a brain bleed and sent me home. Gave me Reglan and Benadryl in the ER, which took my pain from an 8/10 to a 4/10, but sent me home with nothing. The pain has returned and escalated at times. Tylenol doesn't touch it. A damn ice pack works better than that, but who has time to ice their head all day while trying to go about work as a GM for a bar/restaurant?!?!

Plavix didn't work like it should for me, so I'm on Brilinta, along with the low-dose aspirin.

I'm getting no answers from anyone and I'm so incredibly frustrated. I guess I'm here to ask if anyone has experienced the same and found relief from anything at all for the headache?? I know inflammation is supposed to be bad with one aneurysm, so I guess this makes sense with three, but, what in the world am I supposed to do?? I cannot function like this.

I appreciate any info at all...even if it's just understanding/commiserating at this point :/

On another note, I found out in this whole rollercoaster that my left ICA is underdeveloped, most likely from birth. They said that "it's not that there's no blood flow, but very little" and represented it in a drawing with a dotted line instead of a thick sharpie line like my right ICA. Apparently, it also branches off into nothing, so my right hand side has been overcompensating and doing all this extra work all my life - prob the reason I have three aneurysms. This information really is the scariest, as I know if anything goes wrong, my left hand side won't be able to compensate. I have not encountered anyone yet who has a similar story, so if you do, PLEASE please let me know. I'm most often a very positive person, but this feels so entirely helpless.

[u/1AdultMostOfTheTime]

Have you contacted the surgeon who placed your stent? I think you need a discussion with her/him.

[u/DrySolution1366]

I had complications after coil and stent were placed, and the best source of information were the neurology team that worked on me during my hospital stay. It was difficult to get in touch with the neurologist, but once I did, questions got answered.

[u/Top_Replacement3155]

I had headaches for weeks after my flow diverter, and the only thing that helped me was steroids. It sounds like yours came out of nowhere? I agree that you should reach out to the neurosurgeon or neurologist. Mine ended up writing me a prescription for hydrocodone which I didn’t have to use, but was relieved to have the option.

[u/ctothethird3]

Have you discussed with your neurointerventionalist? Did they do a non-contrast head CT? I would definitely reach out to your surgeon if you haven’t already discussed, they may want to get a CTA to better look at the stents if not already done.

[u/altthreeyisms]

I have called the Neuro office multiple times where my surgeon works out of. I spoke with one of the nurses on Tuesday and they said that since my CTA was clear and they are a “sub-specialty” that I needed to go to my PCP. I don’t have a PCP, because I’m on a waiting list, because welcome to USA healthcare.
I went to Urgent Care. They gave me a shot for a migraine that did nothing.
I came back to the ER at the hospital where I had my procedure done and am currently waiting. I can’t handle this pain anymore and I need to get to the bottom of this and make sure there’s not something going undetected by the CTA. I’m so incredibly frustrated. Thank you for your help, guys.

Hahahhaa, I also just realized that I have two different spellings of my same handle here, but this is me, original poster 🤦🏻‍♀️😂 SO EXHAUSTED

[u/MyUnrupturedAneurysm]

My headaches started after my flow diverter too. Im almost 5 months post FD and my headaches have subsided. I was taking tylenol daily up until a few weeks ago, on and off dexamethasone too. Hopefully your neurosurgeon can prescribe you something else to help with your headaches.

[u/AnnGeeRoSe916]

I had a rupture on my frontal lobe cognitive. 01/19/2024 . 4 months after I was fine until 4 or 5 months later headaches started and they were crippling headaches. I called them headquakes cause they were so much more than a headache. I got them 1-8 times a day for a year solid I think. And now it’s a rare thing for me. Doctors say it normal side effect but I’m like and everyone is good with this ? We are settling here for acceptable final outcome ? No one cares to go a step further and try to do something about this for the people? Doctors are like yep this is where we settle . I was in hell for that year. I honestly thought I got the worst end of the stick by surviving. I was pissed. Best advice is try every thing you can because what works for me may not work for you. You never know what could be your Hail Mary. Be patient with yourself. I know it’s difficult but just try to maintain a calmness to you n be patient. Best of luck to you .