June was my one year anniversary from my bilateral styloidectomy for my vascular eagles syndrome (jugular variant).
The good news is that my most severe symptoms are all gone. My vision is great, no more paps, face pain is way down and in general I just feel like a new person.
The not so good news is that I still have quite a few lingering symptoms that are unresponsive to different treatments I tried.
Before surgery my worst symptom was likely some form of atypical trigeminal neuralgia. I had a severe pain and pressure like feeling in the front of my face, like someone was jamming their fingers into my front cheeks. That’s what drove me to get surgery.
I had the other typical vascular symptoms, like IIH, minor optic nerve swelling, dizziness all the good stuff.
I still have pain in the back of my head, burning and pinching sensations around my face. I feel like I’m wearing a cap all the time and sometimes my hair hurts my face when it touches. I also get very weird aching like feelings on the top of my head. No shooting or stabbing pains and all of these are mostly livable.
I decided I wanted to get an MRV to see how my veins look and to see if I can rule out vascular involvement. Unfortunately, even though I had such a drastic improvement in my symptoms, there is still severe compression of my right dominant IJV, amd my left IJV is still completely clotted.
This is my right
And this is my left showing the clot
My full scan is here
I’ve met with my main Dr who’s my quarterback in this. He’s a very strong believer that you must have as much venous outflow as you can so he’s not the type to just say wait and see.
We decided that I am going to get a CTV to get a better picture of the compression at c1 because it’s unclear why I still have compression there. I have a fairly healthy looking cervical spine so there shouldn’t be that much compression. I may be a combination of scar tissue, muscle and lateral mass of c1.
I will also be having a angiogram and balloon venoplasty after we get my CTV results.
He wants to try and fix the clot as well and does not believe I am at risk for PE as the clot is too small to cause a PE. He works in the ER cath lab a few days a week and says he removes IJV and transverse sinus clots all the time and is really not worried.
If we aren’t satisfied with the results of the venoplasty then both him and I are open to right sided c1 resection and external decompression of the IJV. But we’ll cross that step when we’re there.
All in all, still extremely grateful for my surgery and how well I am doing vs prior to it but it looks like there some more work to be done.
Also want to give a shout-out to the members of this group who spend their own valuable time reviewing other peoples scans and offering literally life saving advice. You know who you are and I am extremely grateful for your kindness.