I was brought to my local hospital via ambulance at 2 AM last night due to vascular symptoms in my right sided neck. I am being discharged shortly (around 12pm the next morning). They sent today’s scans to Dr. Ellison at Duke and nothing is worse, just the symptoms coming and going. Big whammy I didn’t have confirmed until now is I have bilateral eagle syndrome. The left side is just slightly pressing against my jugular vein and the right is close to my carotid and only pushing against it positionally. They said there is NO compression at this time. So, I’m just going home to wait to speak with Doc Ellison again and schedule surgery on Monday, as planned.
I’m not going to lie, I thought it might be bilateral. I am symptomatic on the left side but not nearly as badly. Now I’m stressed all over again. Will we do both sides at once in surgery? Will I need two surgeries and to take two separate medical leaves from work? I really hate the idea of that… I’m terrified. My jugular and carotid are at risk every moment until this is fixed and I have the extra added risk of vEDS. I’m so fearful I won’t make it through this.
Edit
I misunderstood. My left and right IJV are compressed with left > right. I also have some other issues and this is all noted in the post I just made in the symptoms and treatments forum.
I’m so sorry you had another trip to the ER, @slekeille! I’m glad they kept you long enough to be sure all is ok.
I don’t know about Dr. Ellison, but most doctors only do unilateral surgery with at least 3 months for healing between first & second surgeries. Dr Hackman is the only surgeon who seems to do bilateral surgery consistently. Perhaps in an emergency situation like yours, even a “non-bilateral surgeon” would consider doing bilateral. On the other hand, ES surgery is major surgery so the risks of doing bilateral would have to be weighed against your physical condition at the time of surgery.
I’m sure Dr. E will share his opinion & reasoning when you talk to him tomorrow.
Thank you! That makes sense. It’ll be interesting to see which he thinks needs to go first in that case, with symptoms and pain being worse on the right but imminent threat being worse on the left. I just posted my scans from today along with the note. Interesting and terrifying! I also misunderstood earlier. Both my left and right IJV are compressed with left > right.
Actually, the carotid compression is far more urgent to treat than IJV. When the carotid is compromised it can cause a stroke. Typically a compromised IJV makes a person miserable but rarely is it as life threatening as a compromised ICA.
Absolutely. But they are saying that there is no carotid compression, and I’m very confused about all of this. I just posted the second scans I’ve gotten in two weeks and both times the results have included that there is no carotid compression. They allege that it’s possible that the reason I experienced syncopal episodes two weeks ago and three weeks ago is that a sudden turn of my head either irritated or momentarily compressed my carotid artery, but there is no evidence of compression as of as recently as today.
Carotid compression of any sort, even intermittent or only w/ the head in a particular position is still more critical to treat than full time IJV compression. The only way to determine whether the carotid situation exists is to have a dynamic angiogram or ultrasound. I think it’s best not to speculate but to hear what Dr. Ellison thinks when he sees your new scan & can discuss the whole situation with you tomorrow.
Oh no, poor you having to go to the ER again! It is quite common for those with ICA compression to get the symptoms with head turning, so it doesn’t often show on a CYA unless done in that position. Obvs with your vEDS you don’t want compression of the IJVs either, but I do agree with @Isaiah_40_31 that the ICA is possibly the one to sort first…as @Isaiah_40_31 says, not many surgeons do the surgery bilaterally, and most doctors feel the risk of swelling is too much, so maybe resign yourself to having two surgeries?
Thank you. You’re right, speculation isn’t helping me. I’m just very anxious about all of this tonight and that leads to my brain attempting to sort everything out before I have all of the information in order to properly do so. Tomorrow’s a big day. I’ll hear the surgical plan and get the date and I’ll get my first visit from home health for nutrition and hydration via my line until the G/J surgery on Thursday. Just have to be tough and get through this! I appreciate you.
Thank you! I’m definitely coming around to the fact that I’ll likely need two surgeries! It’s just wild to go from never having heard of ES to finding out I have it on the right side and it’s severe to finding out it’s bilateral and severe on both sides in a matter of two weeks. My sister reminded me earlier today that before the diagnosis and knowing what was behind my symptoms, I was living with said symptoms for many years and they didn’t kill me. The symptoms got exponentially worse on Christmas Eve this past winter. Since then I’ve not had a moment of relief and it hasn’t killed me. Now I just need to hang on for a couple of weeks and make it through surgery and I’ll be okay! Thanks again for your kind words.
I am in with Hepworth and had the same response as you. Wait what? you mean the right is more compressed than the left? How can that be when my symptoms are worse on the left?.. in my case it’s because the veins running down the back of the head that then split off to the right and left to dump into the jugular veins… well it turns out that the right side are pretty well blocked - so most of the blood is being pushed to the left side. add a compression point (thank you styloid) and you’ve gat way too much trying to take the same exit… so it completely made sense to me when Hepworth explained it like that. But that’s me with my head veins at play. Maybe it’s similar to your case? Also, if one jugular vein ends up working wonderfully again, we may not need the other one to. So, good to be mentally prepared for more surgeries, but maybe a happy surprise…?
That is so similar to me!
Worse on the left but I have more pain on my right side. It is bilateral. I do have moderate cervical paraspinal collateral’s. Headed to Denver next month!
