Since my surgery three months ago, as you all know, all of my symptoms have come back plus more and I am back to being homebound and bedbound.
I’m dealing with severe head pressure, next stiffness, brain fog, full ears, and extreme dizziness. Now I have a new cough and chest/sternum tightness. I can’t move without setting off the cough! It is positional.
I also can feel my jugular flopping around about an inch or two above my collarbone. The radiologist said he could not locate the vein in the MRV so it is drifted. (Only the top). I know I’m filling the jugular because it vibrates and has a different pulse in my carotid on that same side. It’s a strange feeling! By the way, this was my hypoplastic vein that he worked on. So it was small to begin with. I guess this is what happens when you remove the carotid sheath.
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has anyone heard of this?
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could this be the reason for the cough? I’ve read “ whipping or high pulsatile jugular veins Often indicate high-pressure transmitting backward from the heart”. Like a regurgitation.
As always, I appreciate all of your thoughts and comments.
You’re the first person to mention a possible sensation being caused by the IJV/ICA once released from the carotid sheath. I’m not sure how far down Dr. Nakaji opens the carotid sheath but it makes sense that what you’re feeling may be because of a lack of enclosure for your IJV & ICA now. Curious that your IJV has “drifted” out of its normal position but that also makes sense since it was previously confined & is now a “free agent”.
I answered in your other post that I think your cough is being caused by your vagus nerve which may be irritated because of the calcified stylohyoid ligament on your other side; however, the fact that it’s no longer fully constrained by the carotid sheath on one side, might also be an answer. I know it’s been mentioned on our forum about which functions/symptoms the left & more extensive side of the vagus effect vs the right side, but I can’t find the info right now.
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This is concerning. This is something I am afraid of myself since I am 2 weeks out post op on my IJV compression. I dont know the data on this as to how prevalent but I am concerned that it wont stay open and it might need to be stented to keep it open?
As to feedback from the high pressure transmitting back from heart…its interesting thought. My pullsative tinittius is doing weird things. Its not gone but it is changing. Im going in and out of that head pressure and same symptoms as you minus the extreme dizziness although the more I start to move around Im seeing positional triggers like you. I didnt have the carotid sheath removed like you although I had the IJV “decorticated” a good amount on one side and C1 shave. Apparently I had alot of adhesions and banding that was released so mine is somewhat of a “free agent” as well. Luckily mine is a revision and both sides were opened up so I dont need to address doing the other side or consider what that other side might be doing to impact the other side like your current considerations. Or did you have both sides done?
Not sure if it is helpful to share this.
Im curious to hear more about your hypoplastc vein. My daughter just had her scans and she has a significant one. I havent been on the forum enough the past months to follow alot of people cases but will be moving forward.
I have noticed some upper chest pain/sternum that comes and goes. I do have a probable DX of MALS & Nutcrackers (and SLS/TOS) and wondered how opening up IJV’s might impact those compressions and rib hypermobility.
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Hi Luckee, I have smilar symptoms (feels like my jugular is floppy and/or vibrating, and the pulse feels stronger on that side so the whole side of my neck feels goofy). However I have all of that on the side that hasn’t been operated on yet. I’ve assumed that the pulse strength is probably because I have some carotid artery compression in addition to the JV compression, and I thought the floppy/vibration feeling was my body trying to suck blood through the compressed vein and/or it being re-directed to collaterals or the other side (which has been fixed).
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I think he just loosens the sheath and leaves it in place. He showed me some before and after pictures and the sheath wasn’t gone in the after, but you could see how everything had been opened up some.
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hi Rick
That is so interesting that you have that on the side that has not been operated on. It seems like there may be compensation going on. But of course I Don’t know. Possible Carotid involvement?
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Thank you for this clarification, @RickAZ. I hope you didn’t take what I said as insinuating that Dr. Nakaji does something that leaves his patients in a perilous condition. We’ve had enough members who’ve had good outcomes from the surgeries he’s done that I feel confident that his surgical technique is safe & effective.
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I think carotid involvement is likely, my left JV is 100% compressed, hard to believe the CA isn’t at least partially compressed at the same time. Plus I’ve had HBP since my 20s with no risk factors for that at all. Could be due to CA compression? Sure seems possible.
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I agree with your assessment, @RickAZ. It could also be from your vagus nerve being crushed along w/ your remaining IJV. The vagus plays a pretty significant part in BP regulation, too.
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