I am finally able to go meet with Dr. Mehta in July to have some diagnositc testing. Originally the appointment was a consultation, but they called last week and want to just go ahead and do the testing. Depending on the results, I will hopefully be able to meet with Dr. Nakaji later that week.
I think the test will be an IR angiogram with manometry - does that sound correct? They said I’d need to fast before and have someone drive me back after the appointment. For those that have had this type of exam, how did it go for you? I’ve had plenty of MRIs and the CTA, but have not had any testing like this.
Also, what are they looking for exactly? I have read about gradients, but what do those indicate? Pressure or exactly how much blood is circulating?
@Kit_Cat Did they tell you if they are doing the IR angiogram in an awake state or not? The thinking, (you can hear them discuss it in that first venous congestion webinar) is that you might not see the true extent of the pressure gradient if the person is sedated. So you could get a false negative. So if you are awake, as I was, it’s intense. They go in through your femoral vein and run a catheter up to your skull. They measure the pressure of blood flow across the stenosis at about 10 or 12 sites from the IJV all the way up to the superior sagital sinus. The higher the pressure gradient the more likely the stenosis is causing symptoms and surgery will be successful. It can also identify other sites of stenosis in the brain such as the transverse sinus.
Another reason being wide awake is useful is that they can have you move your neck into flexion or have you turn left or right. I had elevated pressure gradients in neutral but much higher gradients with flexion.
I hope that info helps. Let me know if any more questions pop up.
Let us know the date of your testing if you want @Kit_Cat , so we can pray the testing shows what is going on…
Thank you @Chrickychricky for the support and advice, you are such a treasure with your information
@Chrickychricky Thanks for your response and the information!
They did not say whether they are going to have me in an awake state or not. I was kind of thinking I might be sedated to some extent because they asked me to fast beforehand and then have someone drive me home.
It does sound like it would be incredibly intense being fully awake! I can see the benefits of being fully awake though. As you mentioned, being able to move your neck to see the accurate pressure gradients would be essential. That’s amazing they can get different readings from so many sites! How do you think it would be if a person was in “twilight sedation” or a mildly sedated where you are still responsive to directions? If they do tell me that I will be fully sedated, I guess I could bring up the issues that you are talking about and see if they might be willing to do it awake? It sounds like it might be uncomfortable (possible more than just uncomfortable), but I’d like to get the most accurate readings.
It’s not just the sedation which would affect driving home I presume- if they use the femoral vein, then you would need to be careful that doesn’t open up with driving… Made a note of your date!
I had an angio/venogram under full sedation (the vascular doctor I saw said he didn’t think the results vary whether sedation is full or none at all. I expect that if a patient is “out cold” a surgery assistant can move the head into flexion/extension or L/R, but I don’t know this for a fact. From what I’ve heard, though, Dr. Mehta will do the scan according to the instructions he receives from Dr. Nakaji.
When I had mine done last year, I had to lie in the recovery room for 4 hrs w/ my upper body slightly elevated. I had a nurse by my side for the full time for observation. In my case, a plug was put in the femoral vein (couldn’t feel it at all w/ my fingers) & I couldn’t even really see where the catheter had gone in. It used to be a “sand bag” was place on the groin to apply pressure to the FV to keep post op bleeding at bay, but I think that’s old school now.
I think the test Dr. Mehta will most likely do is a venogram, in the interventional radiology suite.
I’ve had two arteriograms - one under general anesthesia ( which had to be repeated at another hospital, because it was incomplete ) and one with a little sedation on board - I also had a venogram with a little sedation, which takes the edge off being on a table for a couple of hours, but allows you to collaborate with the neuroradiologist when asked to hold your breath, or move your head.
And thank goodness for local anesthesia! It makes the punctures to access the femoral artery or vein painless. Getting local anesthesia for dental work is uncomfortable, but it is not for cerebral venograms or arteriograms.
Hopefully, they’ll get the info needed to move on to the next step!
@Kit_Cat Dr Amans (who did mine) does them fully awake because he believes (as does Dr. Hui) that this is the most accurate. That doesn’t mean you won’t see pressure gradients with sedation, it just eliminates the chance that a pressure gradient will be missed due to pressure changes from the sedation itself. That being said, it was a trying day being on the table wide awake for over 3 hours with wires being moved about my brain…which I could feel and hear. It was long for me because we did both the venous and the arterial, the manometry testing and balloon occlusion testing. Than as @Isaiah_40_31 said they put in a plug made of collagen and you wait in recovery for about 4 hours to make sure there is no bleeding. The plug makes a little lump in your groin that slowly dissolves over the course of a few weeks. It was all worth it as it provided the final piece of evidence that I was a good candidate for surgery and now it has been almost a year since my first surgery and I am doing so well. I’m wishing you the same success!
Oh wow. I honestly hadn’t given much thought to the after-care side of this experience at all. I was mostly concerned with the testing. This is all good information though. I’m glad I have some idea of what to expect. Thank you!
Hi @ROkhuysen, thanks so much for your response! So the testing takes quite a while as you mentioned? I usually do okay with dental work, so I’m glad it doesn’t sound bad at all for venograms. Do you mind if I ask why you got both a arteriogram and a venogram? Were they both for IJV and if so, which one was more helpful for you/your doctors?
Thank you for the explanation @Chrickychricky ! That sounds very uncomfortable honestly - you are a rockstar for getting through all of that! Being able to feel and hear the wires must have been such an odd sensation. I’m so glad you are feeling better though. I am so hoping to feel better and would love to be able to say so this time next year. Thanks for sharing your experience - it’s nice to feel somewhat prepared!
Hi there - my first arteriogram was done for pulsatile tinnitus and headache, which was steadily worsening, and my local doctors wanted to rule out an arteriovenous fistula ( a direct connection between an artery and a vein, instead of capillaries leading from the artery to the vein). They concluded that there was nothing wrong with me… they saw prominent veins coming right out of my skull and thought them to be normal anatomical variations.
My symptoms were steadily worsening, so I went to see Dr. Patsalides, and he immediately found the vascular Eagle syndrome, confirmed with a venogram a few weeks later. My gradients were lowish on testing, possibly because I had developed substantial collaterals at the skull base, but he felt I was a candidate for surgery.
It was hard for me to go back to NY for surgery, because my mom was having lots of issues with her heart, so I tried to get help locally, but the surgeons here were completely, completely unfamiliar with the syndrome - one insisted on a second cerebral arteriogram, and his ENT colleague offered only to remove only the tip of the styloid, beyond the area where the vein narrowed from 8 mm to 2.3 mm.
My mom was feeling better, so we went to NY as part of visiting her childhood friend, a graduation from Yale, and my surgery in NY by Drs. Larry Lo and Costantino.
Thank you for your update, @ROkhuysen. You did have a bit of an ordeal choosing between your mom & your own need for surgery. I’m glad she felt better & you were able to take her w/ you back to NY & have the surgery w/ Drs. Costantino & Lo. I’m so glad you’re feeling much better now. That’s the “icing on the cake”!
Hi @ROkhuysen , thanks for your reply and sharing your experience! I’m glad to hear that your gradients were lowish and you were still a candidate for surgery. I’m glad your mom started feeling better and that you were able to make full use of your trip to NY! I have a consultation coming up with Dr. Constantino also, so it’s good to hear a success story. I’m glad you are feeling much better! Thanks again for your reply!
