I was wondering if anyone else had this experience or not? I wasn’t sure if it was just me but the doctor ordered a dynamic cerebral angiogram to check for vascular compression. Fortunately/Unfortunately, it didn’t seem to show any(which this particular doctor uses as her diagnostic criteria even when everything else is pointing to classic eagles). But it did do something that I thought was kinda weird. I got some temporary pain relief in my constant trap/back/shoulder pain that I’ve had for two years since the accident. But weirdly enough my opposite ear started ringing and hasn’t stopped. Also I’ve started having neck/trap pain on the opposite side of my original pain locations. This particular Dr pretty much dismissed everything that I was experiencing. Saying that it’s not possible. But that’s not my lived experience! So, now on top of my original pains now I have new and exciting pain! (
you gotta try to humor sometimes so you don’t break down crying completely) I’m so frustrated with all of this because because I thought going to a bigger facility that I wouldn’t get what I get in my rural area. Just continually getting pushed from one dr to the next with no real answers and the feeling like they aren’t hearing what you’re saying. I think about this hospital that’s supposed to be “world class my ass” is what I feel so far about that place. So, now I’m back to the drawing board and trying another doctor to see if they can help me get back to some semblance of a normal life. I wouldn’t be so mad if she might have been receptive to me asking for some kind of nerve testing to verify what I already know because of my pain. I’m getting sick of only being able to do a little bit then having to wrap myself up in ice packs and staying in bed for sometimes days on end to get some relief. For it only to start all over again when I get up. Having ADHD makes it really hard to stay in bed most days only able to do a little bit then lay down, do a little bit then lay down, then rinse and repeat for almost two years! I guess I shouldn’t really complain because at least I understand how to manage my day to day life so I can keep my symptoms as tolerable as possible. Even with that it’s a struggle everyday and everyone sees the outside but they don’t see the inside pain and chocking feeling. I’m really grateful that they preformed the angiogram because it did show another aneurism. Which is stressful but at least I know. Anyway thanks for reading and looking forward to seeing if anyone else experience this.
@B4tax - I’m very sorry for the new pain the angiogram brought up. I’m curious whether the doctor looked at your IJVs or only your carotids (arteries) as “angiogram” suggests scoping the arteries & “venogram” the veins though some doctors use the term “angiogram” to describe both procedures.
If she only looked at your arteries, & not your veins, & as you suspect, you have IJV compression, that would explain the results you got. You’ll need a CTV or a catheter venogram to show your veins. Because the angiogram flared up new pain, I’d suggest a CTV which is far less invasive. It only involves an injection of contrast during the venous phase of your heartbeat.
I also had problems after my angio/venogram. I developed visual migraines for 4-5 days following the procedure. Apparently they were related to the contrast, & once it was out of my body, the migraines stopped. Maybe your situation is similar? How long since you had the angiogram?
Can you post some of your imaging here so we can take a look at it & note what we see? That would at least give you things to discuss with any other ES surgeons you see. If you don’t have CDs w/ your imaging, you should get at least one copy for you to keep. If you don’t have a disc reader, see if you can borrow one from a friend or family member. You can use radiantviewer.com for PCs or Bee Dicom Viewer App for Macs to convert your imaging to 3D then post images in the sagittal plane. We can also take a look at axial images of your CT at the level of C1 to look for compression.
It’s been a week since the procedure. Unfortunately, by the time I thought about getting a copy of my scan the valet arrived with our car. We had been waiting for 45 minutes and I was ready to go.
She referred me to a functional medicine doctor who I see next week. I’m not sure what they are actually going to do to help me. But I’m willing to try anything. With my other issues that I have going on I figured I’d at least talk to them. I will get a copy before I leave. I actually have a family member that is an mri technician. So, thank you for making me think about that and I will reach out to them!
I’ve got a message into my pain management doctor to see if he is willing/able to try and preform a Glossopharyngeal (CN IX) or Spinal Accessory (CN XI) nerve block guided by ultrasound. I also have a call in to get a second opinion. Then I also plan on calling a couple different doctors to see if they will at least review my chart or imaging before I would travel to see them.
Eagles is a strange thing & symptoms can flare up & disappear often with no obvious reason, & we have had some members who’ve had symptoms cross over to the other side, so maybe that has happened, otherwise perhaps you were a bit tense during the procedure & laid unnaturally to you because of what you were having done, & maybe that’s triggered things the other side? I hope that this does settle, & that you can get a copy of your angiogram to see if the veins were checked too…
Good the aneurysm has been spotted, is this needing treating too, or one to watch?