I ended up going to UofM last Thursday and saw one of the top otolaryngologists. He acknowledged my styloid was elongated but stated since my hyoid area was the most affected, it wouldn’t have anything to do with my styloid. He did end up giving me a steroid injection in my neck which helped maybe for a day. He did not recommend surgery and this is the second doctor who has told me that people can live with compressed jugular veins. I’ve got everything around to mail out my scans and medical records this week. @Isaiah_40_31@Jules Did either of you go through jugular vein decompression?
@Lynny43 - We are dubious of the experience w/ IJV compression doctors have who suggest people can live with it. Even when taking a potent blood thinner, most people are still symptomatic & uncomfy. I also would say the doctor you saw isn’t very familiar w/ the pain/symptoms an elongated styloid can cause. I’m glad you’re continuing to pursue an opinion from a doctor who’s more experienced w/ ES & IJV compression. I’d suggest sending your imaging to Dr. Costantino as you’ll likely get a quicker response than going through Dr. Hepworth’s office. Additionally, I wouldn’t send imaging to Dr. Hepworth’s office until you have an appointment there as my experience dictates, they will get “lost”, & you’ll have to resubmit them when you do have an appt.
Both @Jules & I had jugular vein decompression. Jules had two surgeries (one for each side) for bilateral compression w/ good results, & I had unilateral decompression which stopped the progression of my hearing loss & stopped my vertigo episodes. I expect Jules will give you more information about her experience.
Thank you. I love hearing success stories about this. I’ve read some people’s stories on how they were worse after surgery, so that part is a bit scary to think about, especially if you’re unsure if you have CCI as well. I’m sure the risks and benefits are discussed beforehand. Right now, the sleep issues and anxiety are the worst issues I have, as well as just the general discomfort and anterior neck shifting. I can’t believe these doctors are telling patients they can be fine with compressed jugular veins. I’m sure you can be alive with it, but I doubt people are fully thriving. If they can be compressed and closed off, what would be the point of even having them in the body? Lol
Yes, I had bilateral IJV compression & the symptoms were very hard to live with (and mine weren’t as bad as some people’s on here!). I had a constant off-balance feeling, as well as very dizzy episodes, head and ear pressure, pulsatile tinnitus, brain fog, & some strange intracranial hypertension symptoms like feeling I was falling, feeling closer to the ground than I was, and the worse was a sort of rolling, sucking feeling in my head. These all improved with my first surgery & went almost completely with the second. But I didn’t have any C1 involvement or instability, so sometimes these can affect how successful the surgery is, which is why some members haven’t had completely better afterwards, sometimes there are other issues going on which need to be addressed too.
Some people’s bodies adapt to the IJV compression with collateral veins taking over, but often it gets to the point where these can no longer be enough & people get symptomatic, and also the collateral veins can cause miserable symptoms as well, so like you say, it’s not likely anyone would be ‘fine’ with IJV compression!
There are several research papers about IJV compression, & some of those also mention the long term cognitive effects of it.
I hope that you can try to get an appointment with one of the doctors who are expert with this?
Thank you @Jules. I am sending out my images and medical documentation this week to Constantino and Cognetti, just trying to find time between working and getting up to the post office. It is extremely hard trying to keep it together/work like this, besides anything else.
I already have a virtual visit with Constantino set up for the end of April and I guess Cognetti needs to review everything before he agrees to a consultation. I’m not sure if this was already asked, but who was your surgeon?
@Lynny43 - @Jules is in the UK & Mr. Axon did her surgeries. I’m glad you’re sending your imaging to both Dr. Cognetti & Dr. Costantino. I hope they agree on your diagnosis & offer surgery ASAP. We do know that Dr. Cognetti is booked out pretty far for consults & surgery i.e. into the summer, because he only does his ES surgeries once or twice a month whereas Dr. Costantino does them more often.
That’s good that you have an appointment with Dr Costantino!
As @Isaiah_40_31 said, I’m UK so was lucky enough to have my surgery with a doctor not too far from me.
