So I’m sorry for the poor writing skills. I am a 26 year old male and was recently diagnosed with vascular eagle syndrome I had my left side removed on November 28th of 2022 I felt great for the first two weeks after surgery and now every symptom is back. Memory loss brain fog head pressure feeling like I’m not even here pain in my head and neck but Dr Mathew old will not do my right styloidectomy for 6 months but I just can’t do it anymore it’s just getting worse and worse every day. It’s a struggle for me to find the will to get up and do life but I have an amazing wife and three beautiful children that I do it for everyday. But it’s hard for me and I’m so grumpy anymore from feeling like this I am just at a complete loss. I’m sorry for the rant I just don’t know who to talk to
Hi & welcome to the site!
So sorry that you’re still feeling bad after your surgery, but it’s promising that things improved for the first 2 weeks. It sounds as if your blood vessels (?IJV) re-opened after the styloid was removed, but maybe because of swelling it’s closed again giving you symptoms again? If you’re not icing still and sleeping half-upright it would be good to keep that up as that will help if there is still swelling. Unfortunately it can happen; we have a few members on here who’ve had bilateral IJV compression, and the vein opens up initially but then closes again. Sometimes ballooning it again can help, and sometimes stents are needed to keep it fully open. Having the second side removed will possibly help too, as there can often be a dominant IJV which takes most of the blood flow. (Have you had a CT with contrast to diagnose your VES?) A medication which might help in the meantime for your symptoms is Plavix- an anticoagulant- which has helped some members. I’m not sure in the US whether your PCP can prescribe it or whether you’d need a referral to a vascular surgeon though. And some members have had a course of steroids which sometimes help.
It’s hard that you have to wait 6 months between surgeries, but it is better to let things settle and heal before having the 2nd side done. The only alternative would be to travel to see another doctor, but I’m guessing with your family situation and the symptoms you have that would be difficult, plus waiting times seem to be going up a bit in the US for quite a few doctors…most leave it 3 months before doing the other side; could you try to persuade Dr Old to do it any sooner as you’re really struggling?
@PatientD has posted quite a bit about lymphatic drainage following her surgery, you can use the search function to look for advice on that; she’s had recent surgery for VES too.
Don’t feel bad for having a rant (not that I think you have!), we all understand on here & have been through it ourselves…I’m glad that you have the motivation of your family to keep going; I know it’s hard, but healing is often very up & down with this surgery, so you’ll hopefully see more improvements as time goes on. Quite a few of us have found it can take a few months before we feel ‘over’ the surgery, & nerves can take even up to a year to heal. So sending you a hug, & will pray that things improve for you
Hi @Hunterlee739! Your writing skills are just fine so no need for apology.
I agree w/ what Jules said about your IJV possibly closing again from post op swelling. It would be good for you to follow-up with a vascular surgeon (Dr. Old could probably refer you) & get an angiogram/venogram done to see what the status of the blood flow through your IJV is.
I’m glad to know Dr. Old did your initial surgery as he has a good reputation for thoroughly removing the styloid so I have no concerns re: too much of being left behind. I also had to wait 6 months for my second styloidectomy & my remaining styloid caused a lot of trouble after my first surgery. I didn’t have VES so my symptoms were mostly pain & heart/blood pressure issues. Sadly, exactly a week before my second surgery (I had practically been counting the minutes till surgery…), I had a cycling accident w/ a head injury which postponed my surgery 3.5 months. I was devastated!!! That is to say, stay off your bike when you’re getting close to your next surgery date.
Jules has given you really good advice all the way around. I’d say head elevation when sleeping/resting, getting an Rx for a blood thinner & possibly a course of prednisone, & an appointment w/ a vascular surgeon should be your top priorities right now as those are the things most likely to give you some symptoms relief.
I’m so glad you have great family support. Having a reason to keep going when you feel so terrible is invaluable. Feel free to come here & be grumpy, sad, whiny, whatever you need so that you can give your family the best of yourself. We’re totally here for you!
Thank you both for your word of support I had a ct with contrast after my surgery and they said that my jugular vein had opened up and were fine
Glad your CT showed your IJV was open. How long after surgery did you have the CT i.e. was it prior to the 2 week mark when you started feeling worse again? If so, the IJV could have been shut down by post op swelling after you had the scan, as Jules suggested, or sometimes, they don’t stay open if they’ve been compressed for a long time. Alternatively, your current symptoms could be coming from the other side or from residual inflammation from the surgery. I think a 10 day course of Prednisone might really help you, or did Dr. Old Rx that post op? If you haven’t taken it, & can tolerate the stuff, it would be worth asking for.
@Hunterlee739 I’m sorry to hear your symptoms have returned post surgery. I have had exactly the same experience. I felt great for 10 days immediately after my left styloid was removed, but since then my symptoms have steadily returned. At my most recent doctor’s appointment, they said that most likely my jugular vein has collapsed post surgery. Right after surgery I had about 30% improvement in blood flow, but things can change. I’ve been referred for a jugular ultrasound to confirm whether or not my vein has collapsed. I highly recommend that you talk to you doctor about getting a jugular ultrasound to confirm whether or not you still have the same level of blood flow that they saw immediately after surgery.