Angiogram Brain

Hello about 4 years I had a brain angiogram to investigate a dural AVM. It had self healed by the blood in the vein Clotting so it is now monitored and am restricted on lifting heavy weights and twitch type exercise. During the Angiogram I had a massive headache worse than ever during the dye spraying. Shortly afterwards I suffered a mini stroke which has left me with some limitations on at the extremes of balance and playing the Piano. Has anyone experienced the headaches during the angiogram? The doctors didn’t seem worried but them they didn’t get the headache during the procedure. I would love to hear from others on this matter. Thanks Ian

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I had an angiogram two weeks ago as a follow up to a craniotomy in I had in 2019 to remove an AVM over my right temporal lobe. My head felt like it was going to explode. I’m still having terrible headaches. I chalk it up to the clown that did the angiogram. He was the resident of a recent resident, not the “world renowned” neurosurgeon I thought I hired. Despicable health care practices.

Angiograms are not wholly pleasant experiences (says the master of understatement) but I’d think that if you managed to have a stroke during the procedure, that might be the bigger cause of your discomfort.

I know some people, e.g. @Angela4 are also allergic to the contrast, so some of how you feel may be to do with the contrast.

Did you have an ischaemic stroke or haemorrhagic stroke?

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The multiple angiograms I had prior to my surgery 3 1/2 years ago triggered migraines with aura. I had those before for years (family curse) but I think it was the pressure the dye caused that rather than the dye itself that triggered them. I was fully awake for the first one as anesthesia doesn’t work very well on me and they hadn’t figured out which would work to knock me out. If not for the migraine it was interesting to see the scan on the screen in progress. I have a large blood vessel that does a loop-de-loop right through the middle in there!

So far I guess I was lucky: the DAVM hadn’t ruptured, but the embolization didn’t do the job. Scheduled and then went in for a second embolization only to have it cancelled and surgery strongly recommended asap. Surgery was successful thank heavens. Turns out the DAVM had ballooned up and was ready to burst and kill me.

Going in for a CTA on the 28th to monitor the fenestrated right posterior inferior cerebral artery they found during my surgery. Those tend to develop into an aneurism later on causing ischemic strokes. They’ll also check at that time that the surgical clips from my surgery are still in place. Not scared this time since I know what it is like to have one done. What scares me more now is how do I pay for the co-pay from having it done.

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@Ricardo1 Hi I am not sure if I got the headache during the angiogram cause I asked the anesthesiologist to knock me out me out before I hit him. MY DAVF was more complex then my scans showed and the drs seemed excited at whatever they saw on the screens but what I saw was a scary looking spider in my head . I am super afraid of spiders and snakes ( normally very brave person i.e. Chased down a guy who mugged me but I am scared of a 1 inch spider :slight_smile: ) Anyway so my heart rate went up and next thing they were doing a main line IV which really hurt and when I am in pain I want to punch someone lights out so I knew I couldnt move so I told the nice dr you better knock me out before I knock you out so he did. But when I woke up my head felt like I was being electrocuted and I realized that I had had another stroke! I signed to get my stroke and that I was in pain but none of the smart people working knew sign language and so they grab my husband- He informed them he did not know sign language not was he aware that I did. But he got pen and paper and I was able to write down the message. @DickD remembered correctly that I am deathly allergic to the dye and they knew ahead of time and they have me take steroids for a few days ahead of time. Then I am sick for a few weeks post angiogram. Such fun times. Since I am now also allergic to lidocaine - I had a rare stroke ten years before all the DAVF started called a CVST which I had 5 blood clots form in my head from eating too much vit K and taking vit k Then about 6 months later the DAVF grew - I went into a coma and was paralyzed. I still have some weakness and pain on my left side from that stroke and head pain. I am so sorry that the drs didnt seem to address your head pain regarding the procedure. I found out that drs dont even get a day of training in med school on pain in the USA. I have a great team of drs and physical therapist at Stanford. I will say that you just have to do PT almost every day and what really helped was getting a Tens unit that was also an EMS to use the EMS while I do PT / exercise to wake up my muscles. You can find them on Amazon and overstock.com . I hope your head pain is gone.
Hugs
Angela

My last angiogram, that verified complete occlusion of my dAVF actually went very smooth. . . I was expecting a lot worse. I was out of it the rest of the day that it was done & pretty much the next following day - that’s about it

Almost kinda worth it - to see the inside of my brain & to see this dAVF fully occluded while I was awake. All of my previous angiograms were done with me being completely under.

Nothing like seeing the inside of my own dome & the feel of about a 3-4’ catheter slide through the artery on my right wrist all the way into my head.

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Thnak you very much for your response. I can fully understand how you feel. I get regular headaches and can be worse at night dependent on how I rets my head.

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Thank you for responding. I am very sorry to read your story. When I was having my angiogram I saw stars and lights in my eyes then the headache for a few seconds, It was the worse headache ever, I feel comforted that others have experienced the same. I do think the doctors should be more honest about the pain although they do warn of potential stroke.

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Hello Angela, how very sad your note is and I am very sorry for what you have been through. When I went into see the Dr who was going to do the angiogram he seemed to want to get it over with as it was late in the evening. He was confident that he would not find anything nor did he explain about the likelyhood of headaches during the procedure. He would tell me when the he was going to squirt the dye, I had the angiogram on both sides of my head and seemed like many squirts of die. but the pain each time was unbearable so I just tried to go to sleep but of course not possible. As I still have the blood clots in my head and there they will remain because they sealed the AVM, I live in a constant risk assessment situation ref lifting things and anything that raises blood pressure. I wish you well Angela.

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@Ricardo1 Thanks I am super lucky to be alive after the strokes etc and sounds like we both suffer from head pain. I think drs either think they tell you all the risks or dont want to scare us. I am always amazed when I pick up my medical records what is in them and what wasnt not discussed but is the notes. -My dr did also look at both sides of my head as well. He said that is why they go through the groin at Stanford and not through the arm like they do at UCSF cause they can only see one side of the brain that way. I am so sorry you still have the blood clots. I hope you can get some pain relief - I just had botox shots today and that gives me some relief of my constant head pain . The first round for some reason did not do much but my dr said that is pretty standard. I am wondering if it could help you.
Hugs Angela

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Hi Angela,

My medical notes have just been shared with me and I was pretty shocked I wasn’t told a couple things… mainly that I needed to come off one of my medications immediately - it was in red and capitalized… but no one told me! Also - that I should avoid contact sports… my job is a footballer, but no one told me! - I just got told no heavy lifting.

Oh well, at least I know now. I find out results of my angio and treatment options in 3 weeks, so i should know more then.

Ashleigh

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@ashleigh Oh I am so sorry about the news - Its happened to me as well and I even bring my husband and he has confirmed that the drs did not mention stuff but then its in the medical notes. I too was told I could not weight lift and now I just go in with my list of questions written up in priority. I hope you will get to resume your job as a footballer after treatment.

Angela

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