Hello All,
I would like to share my story of vascular ES in hopes to help anyone I can as well as hear all your amazing feedback and ideas. I’ll keep it as brief as I can.
After a night of painting my walls I woke up with terrible vertigo. Vertigo lasted about a week and then started to experience tinnitus, eye pressure / bouncing with my pulse / double vision, terrible head and sinus pressure, GI issues, weight loss, irritability, brain fog (not severe, but hard for me to focus on things), neck stiffness.
Like so many of you, prior to this I was a healthy, pain free human. After countless Drs, blood tests, MRIS and CT scans I finally found an interventional neurologist in NY named Dr Arcot. On our very first appointment he asked me if I ever heard of venous stenosis or IIH and it was the first time in 2 years a Dr mentioned something at an appointment that I did not think of in advance.
We did an MRV / MRA and then attempted balloon angioplasty only discover that my left IJV is completely occluded at the C1 / Styloid process level, and my right side - which is the dominant side - is severely stenosed. He said it was working at a max of 20%, and that’s when I was laying down. I also have clotting on the left side above the occlusion, but Dr Arcot said it’s fibrotic and and balloon can open it when we remove the compression. We Hope.
Now for some reason, Dr Arcot did not have me do a pressure gradient test. He said he has his reasons for it but it’s a long conversation to explain and we never got around to it yet. So one day I need him to explain that to me.
What we did know is we finally found an issue and surgical intervention was needed.
We decided to do the left side first. Dr Arcots logic was that it’s already closed and not working. My right side is my only working (barely) IJV, so let’s first see if we can open the left side, see if I feel any improvements and then we can decide on the right. Why risk touching my only working IJV.
I had an appointment with Dr Patsalides who said he would not touch the left and only focus on the right, but I decided I like Dr Arcots more conservative approach. I don’t think there is any right or wrong answer here, however, I do not like the idea of having an occlusion, being that there’s already some clotting and some reasons to think that it can lead to clotting further up.
I had left styloidectomy done at NYU on March 15. Surgery wise, it went great. I had very little pain and while I am by no means better, I have seen a marked improvement vs prior to surgery.
Unfortunately, as so many of us are familiar with, because the surgeons were not acutely familiar with the vascular side of this issue, they did not shave enough of my styloid down. There’s still an occlusion at the very top of the left C1 / styloid process.
Long story short, I need another surgery. Because of the complexity and novelty of vascular ES there are no solid answers on what to do next.
If I have to get my C1 resected I would only do it through Dr P and the surgeon he works with, Dr Lo. However, he only does one side at a time and would require me to do another angiogram (more radiation). I know both my styloids are calcified and I want to remove both of them.
My other option is to do the next highest reward / lowest risk procedure, which is bilateral styloidectomy to the bone and hope that’s enough without the need and risk of resecting the C1 lateral mass.
I met @Msdstc (amazing dude) on reddit and have had lengthy discussions with him. We have very similar situations, albeit he has been suffering for so much longer and has had to go through many more Drs and surgeries.
Like him, I am pretty set on doing a double styloidectomy, and from everything I gathered, Dr Hackman seems to be one of the best to do this. I know he’s no Dr Hepworth and wont touch the C1, but I cannot afford to wait and see Dr H and if I am only going with the styloids for now, Dr Hackman seems like my best shot. I fully aware that the styloidectomy alone might not be enough, but I am rolling the dice here. Im hoping that the fact that I saw a marked improvement from removing even just a little of the styloid on the left side, suggests I will see the same by removing both styloids.
So there you have it. Please feel free to ask any questions and share any advice.
Thank you!
I will post images below of my scans. All of them are POST-OP for the left styloidectomy.
