I had an Angiogram on Wednesday and the doctor measured my pressure n multiple positions. Unfortunately, the doctor had to use a lot of dye and I’m having a reaction: numbness on the right side of my face. It happened right after the procedure so the doctor checked it out and said it happens when that much dye is used and it sometimes can escape the blood stream. It’s now the second day after the procedure and it hasn’t gone away. They’re sending me for a CAT scan to be safe.
On another note- the results showed that my pressure is not that bad. Earlier in the summer I had an eye doctor diagnose me with pressure on my optic nerve. The Angio shows that the pressure is not that high because I’ve developed other routes for my brain to drain. But considering I have brain fog and headaches my doctor said I may be very sensitive to any increase in pressure. The doctor suggested I postpone my surgery to see if a spinal tap gives me relief and that would determine if the decompression surgery would relieve my symptoms. So I took my doctor’s advice because I can always have surgery in the future. (It also allows me time to straighten out my insurance issues.) I wonder what you all might think of all this and the Angio results. And I would be really interested to know if anyone else had an adverse reaction to dye.
Am I interpreting this correct - 100% impingement of left IJV with right and left head rotation? Doesn’t this mean that when you turn your head (left or right) your left IJV gets completely cut off at the level of C1? And 80-90% cut off when looking down? Not sure why the doctor would frame it as “not that bad” when your whole IJV on the left is cut off with certain movements? And you’re seeing similar rates of '“impingement” with your right IJV. I’m confused as to how this wouldn’t be a problem. But maybe I’m interpreting the report wrong.
This is typical (but it’s veins not arteries) when IJV compression is severe. The veins that take on the load that the IJVs can no longer carry are called collateral veins. The fact that these were noted in your report & mentioned to you is a sign that your compression is severe enough (in spite of what the doctor said) that your body has created alternate pathways for blood flow out of your brain. Significantly, these collateral veins can themselves cause symptoms because they really don’t belong where they are, doing the work they’re doing. In most cases, they also don’t adequately replace the level of blood flow that the brain relies on via the IJVs thus the symptoms you continue to have.
I had a reaction to the contrast used when I had my angio/venogram last year. I woke up & soon had a visual migraine. I’ve never had a migraine let alone a “visual” one. I mentioned to my attending nurse that my peripheral vision had become “shimmery” (like looking at water when the sun is on it). Following the shimmer I suddenly got a horrific headache that lasted maybe 30 min. The nurse said it was nothing to worry about. The next day it happened again, only once, but the visual aspect was worse almost to having visual blackout. I was afraid I was having a stroke so called the surgeon who also dismissed my symptoms. Again the visual change & ensuing headache only lasted 30-45 min. I had a similar situation on day 3 post op but by that point suspected it was from the contrast & confirmed it w/ my daughter who’s in the medical field. I recall I skipped a day, but when it struck me the 4th time, I was driving on a freeway in the middle of nowhere. I pulled over & took an aspirin thinking if it was a stroke starting at least the aspirin would help thin my blood. The 4th time was the last time it happened. I hope your facial numbness doesn’t last 4-5 days, but it could. I’m glad your surgeon is following up w/ a CT.
I had worsening dizziness, so I went to the ER. CAT scan was normal. Thanks.
This has really been a wake-up call that I shouldn’t delay the surgery. It makes sense that the other pathways aren’t enough and can cause problems of their own. I just want to feel normal again- not like my head is an over inflated balloon about to pop.
Starting taking the diamox again, felt better when I first got up. But now feel in a huge brain fog, light headed and tired. Just took another diamox so hopefully that makes me feel better. I’m horse in the throat and the Dr said I have liquid behind my right ear, which really hurts. Thinking I have congestion which is making me feel worse. The numbness in my face is better. My white blood count was slightly high, so I must be fighting something off. Of course having too much dye injected into your system can’t be good.
I agree with the others that it sounds like significant compression is there with different head positions; if the collateral veins are compensating now so that your intracranial pressure isn’t significantly raised, that’s good for now, but there will likely come a point where they can’t compensate enough & you will get raised intracranial pressure…or the collateral veins become very enlarged and painful as some other members have found out.
Personally I would be wary of having a lumbar puncture to see if it improves symptoms - there are risks with this, so it shouldn’t be undertaken lightly. My doctor was going to send me for this but looked at my CT showing the bilateral IJV compressions, listened to my symptoms & decided this wasn’t necessary.
I’m glad that your reaction to the dye seems to be wearing off!
@Johnny99 - I agree w/ @Jules about the lumbar puncture. Not only are there risks of that creating a CSF leak at the base of your spine at the puncture site, the amount of CSF fluid that’s removed can put you into low pressure in your brain which will give you a terrible headache, too, & it can take time for the CSF to build back up.
I know that there are some significant risks with an LP, but I was glad to have had one none-the-less. The relief after 12 cm of water were taken off was incredible. But the best thing for me, the reason why I am glad I did it, was that my brain fog was gone for about six weeks. And while it did return, I am so much more motivated to do surgery now because I KNOW that my brain is still capable of working well if I can just take the pressure off it. After years of brain fog, I wasn’t sure how much capacity I had left. But of course everyone has to weigh the risks and it is easy for doctors to order tests that will give them useful info but might cost us a lot. We have quite a few hard choices to make, don’t we?
@jyoti - Thank you for your input. There’s nothing like experience as a teacher, and I’m glad you could share about good lumbar puncture results, since the previous sharing was from lack of experience & based on the negatives we know of. There are always two sides to every story.
I think the Angiogram did something to my facial nerve rather than it being the dye- or it could be a combination, I don’t know. I notice the numbness is slightly better in certain head positions. It probably doesn’t help that I have a bad head cold.
But as far as the LP, I think I’m going to pass. It’s adding another procedure that could lead to complications when I should just focus on the decompression surgery. I have slight optic optic nerve pressure despite not having a lot of intercrannial pressure. That over time will not improve unless I get the jugulars working properly. So whether I do the surgery now or later it’s something that needs to be done eventually, so why not give surgery a chance to fix my symptoms sooner rather than later.
That’s a good way to look at it @Johnny99 … The angiogram shouldn’t have done anything to your facial nerve, unless it was the different head positions during the procedure which maybe irritated it?
@jyoti thanks for your input, & glad that the lumbar puncture helped you, that’s a big amount of fluid to be removed! We’ve had other members who’ve gone into intracranial hypotension after leaks or procedures which is not pleasant either , but glad that it helped you !
I totally agree–we have to be concerned about hypotension as well as hypertension. And when I had an intracranial bolt monitor placed 7 weeks after the LP, my intracranial pressure, measured directly, showed low pressures while I was sitting and standing. I have a ton of dural blebs and possibly a CSF Venous Fistula, so I think I was already on the Spiky-Leaky rollercoaster, but the beauty of the LP for me was that it confirmed that my brain can still work relatively well when the pressure is lowered (mine was not very high to begin with–opening pressure on the LP of 21). I have to admit that I enjoyed having a brain for a few weeks, but most important was what it said about the potential of a decompression.
It sounds like it certainly confirmed things for you & good that’s given you the confidence to pursue surgery, I hope that you get your brain back again soon!
