Hi all!
I recently discovered I have compression of the lower jugular vein going into the subclavian vein. I just had my other decompression for jugular vein in January.
At this point, I’m not sure how much compression I have, but I am going to get a CT soon. My manometry pressure was 17.
My symptoms are very strange and scary. I’ve been having chest pain for months and it’s positional. Worse when I’m laying down. It actually causes a dry cough. It’s not coming from my throat. It’s coming from pressure in my chest. I’ve recently been waking up panicked in the middle of the night like I’m not getting enough air and like I’m suffocating. I also feel a choking sensation in my throat.
How is this normally treated?
The NIR recommends to stent. What are your all opinion about that? I think it has to do with what’s actually compressing the jugular.
Does Nakaji decompress this? He did my first jugular vein surgery.
I’m thinking this is more of a thoracic outlet issue. I have the tingling in the hand and arm, but not severe. My main symptom is the constant pressure in my sternum.
Your comments are welcome! I appreciate this for him so much, and all of the wonderful people I’ve met here.
I agree, it does depend on what’s causing the compression; if it’s bony compression a stent would be dangerous, and if you were to have surgery to resolve whatever is causing the compression the vein could re-open itself… It does sound like this could be more of a TOS issue, I think it would be best to get assessed for this next. There have been quite a few mentions of TOS as well on the forum, I’m not aware of any names of doctors who specialise in this in the US, but you could have a look in the past discussions, here’s some links & you could ask members in these which doctors they’ve seen?
@Luckee7, I did some research & learned that the IJVs join with the subclavian veins & drain into the brachiocephalic vein. I took some picture from a KenHub video I watched that explains this better -
The area you have compression is where vascular TOS occurs & it could be at least part of the cause of your current symptoms. I suspect the brachiocephalic vein is what could be causing your chest pressure, but that symptom along w/ the cough & panic sensation could be coming from your vagus nerve. Have you considered getting a FIESTA or CISS MRI of your vagus nerve from skull base into your chest?
As @Jules suggested, a stent should be the last possible course of action. It’s dangerous to stent a vessel that has known compression w/o knowing what’s causing the compression. Stents placed in vessels that have bony compressors, w/o the cause of compression being removed, often fail making the situation worse.
TOS is treated by surgery. @Snapple2020 mentioned a doctor who is quite experienced w/ TOS surgery, but I can’t remember who it is. Hopefully she’ll reply & share that info.
I know we’ve suggested FIESTA MRI for looking at the vagus nerve before, but interestingly in the video with Dr Aghayev , he mentioned that it’s not possible to see the vagus nerve with any imaging I believe…
I need to take the time to watch that video. I’ve started it a couple of times but haven’t gotten all the way through. I’m surprised if the vagus nerve wouldn’t be visible via FIESTA MRI since it’s so BIG!
Geez, my brain is mush and I cant remember where I wrote the name down. I think they may be at U of Minnesota? I just found someone at UC Davis in Sacramento , as Dr. Misty Humphries however I cant get them to return my call. Keep asking and eventually I find that name. Since I am on west coast and already flying east multiple times, once I found this person at a TOS center on this end, I let that one out of my brain. I have heard of a TOS center in Houston.
I believe Dr. Aghayev also diagnoses and does surgery for TOS, if you are willing to travel to Turkey. He does telehealth consults so you can send your imaging to him and get his opinion via video call.
Pressure in the chest? Maybe you have problems with the heart or the superior vena cava? If you have a brachiocephalic left jugular vein that is compressed between the aortic arch and the scapula, then a classic TOS surgery with the removal of a rib will not help and will likely make the situation worse, as the thoracic section will drop lower. Such surgeries are not yet performed. There has been an attempt to expand the scapula. I suggest expanding the clavicle and the first rib, but again, such surgeries are not performed.
Radiologists say that the Fiesta mode is not informative and is not effective for imaging nerves in the neck. They will be partially visible. What does this give you? Any good neurosurgeon knows the anatomy of the nerves and how they pass through the neck. You won’t be able to tell from the images whether the nerves are irritated or not. You won’t be able to see small inflammation or damage to the nerves. However, you will be able to see large nerve schwannomas even on a CT scan.
And to be honest. I don’t really care. You have your opinion, and I have mine. Of course, you do a lot of useful work on the forum. Thanks . But We’re all amateurs here on the forum, not doctors. It’s pointless and even ridiculous to argue with each other. ))))
No arguments here, agree to disagree agreeably ! No we’re not doctors, and are very open that we’re not experts, there’s disclaimers on the info pages, just sharing what we’ve learnt
I’m just too lazy to search for articles that describe the Fiesta mode on an MRI scan, or I’m too lazy to download images with the Fiesta mode and display them here )) I’m telling you, I don’t care )))) An MRI scan isn’t particularly harmful, and even if you take an extra MRI scan and don’t understand anything, it’s not a big deal )))
All radiologists say that MRI is not very harmful. MRI uses electromagnetic waves with a high field strength. While the electromagnetic field can be slightly harmful, the risk is very low. The contrast used for MRI is different from the contrast used for CT. The contrast for MRI is primarily gadolinium (a metal), which is only harmful because it accumulates in the body. However, contrast is rarely used in MRI scans, as it is rarely necessary. On the other hand, the contrast for CT is potassium iodide, which can burn the inner walls of blood vessels. Additionally, CT scans are harmful because they use ionizing radiation (radiation).
