Hello all, I had a cerebral angiogram and venogram this past week and my interventional radiologist said I’m positive for venous stenosis most likely caused by my styloids. He didn’t go into detail.
But I’ve been dealing with some pretty awful symptoms lately and I keep feeling like I will just collapse and die. Please let me know if anyone can relate but the most bothersome symptoms are a lot of weird head sensations lately, like pushing down and pulling my brain and also my throat. Along with these brain sensations I feel like I am lacking oxygen and I’m constantly trying to get more air, like constant air hunger. Nothing relieves it. I’m wondering if it’s nerve related or if im actually lacking oxygen.
@1995samara - Welcome to our forum. We have quite a number of members in your situation so you’ll find good support & info here.
The internal jugular veins drain deoxygenated blood from the brain. When they are occluded due to compression this is referred to as Venous Outflow Obstruction which basically means deoxygenated blood can’t leave the brain at the rate freshly oxygenated blood is trying to flow in through the carotid arteries. Thus, a situation of high blood pressure occurs in the brain which is called intracranial hypertension (IH). IH is what causes the uncomfy & odd head symptoms you’re experiencing.
Nerves irritated by ES cause pain, burning sensations, tingling, numbness & the like though nerves can create a feeling of pressure in certain areas, too. For example, I had the feeling that something was pressing hard on the back of my tongue as one of my symptoms. This was caused by irritation to my glossopharyngeal nerve, & it stopped once my left styloid was shortened.
You will need to see one of the vascular ES surgeons on our Doctors List to get proper IJV decompression when you have your styloidectomy.
These are
•Dr. Nakaji (lowest to you) in Phoenix, AZ - our member @Chrickychricky recently had her decompression surgery done by him so is a wealth of information regarding his surgical methods & skill.
•Dr. Hepworth in Denver, CO, who has helped many of our members over several years but his office is a bit of a nightmare to work with.
•Dr Costantino & Dr Coniglio who are both in NY
•Dr. Damrose in Palo Alto, CA, at Stanford, who is a new comer to doing vascular ES surgeries but is a very experienced ES surgeon.
All these doctors are on our Doctors List so you can look up their contact info there.
My angiogram was done by Dr. Pannell at UC San Diego Health. He’s a great doctor and is aware about Vascular Eagle syndrome but only to a certain extent. I will try to see one of the recommended doctors though I know it will take a while.
I think Dr. Pannell’s name has come up here before but not in a public post. He may have been part of a team at UCSD Health who participated in a vascular decompression surgery a number of months ago. I haven’t heard how the patient involved is doing though. You might ask him if he observed or participated in that surgery when you see him in Oct. for your follow up. In the meantime, I’ll add him to our Doctors List as an ES resource but will note he doesn’t do ES surgery.
I’m so sorry that you’re feeling rough
I had bilateral IJV compression, so had symptoms of Intracranial Hypertension, I was starting to feel pretty ill before my surgery. I had a constant off-balance, drunk feeling, then awful dizzy spells, feeling like I was falling (even sitting down), head and ear pressure, brain fog…but the worst sensation was as if my brain was being rolled up, really weird! It felt like I might die, others have described sucking feelings, so it sounds maybe like you’re experiencing? The worst of the symptoms resolved with my first surgery, hopefully this will happen for you too when you can find the right doctor…
Some members who’ve been seen by Dr Hepworth have had good results taking Plavix, there’s another medication I think others have tried but I can’t remember the name! It might be worth thinking about trying this while you wait? And if you’re not already, sleeping partly propped up in bed can help with the head pressure too…
I think others might have mentioned air hunger, Idk if that might be the vagus nerve, it does have a role in breathing?
I hope you’re able to see Dr Nakaji maybe?
I wanted to show you this link about C1 lateral mass.
I thought it was interesting. This Interventional Neuroradiologist thinks most of the C1 Jugular issues are not from Styloid Compression. My radiology report says elongated styloids are causing a mass effect on C1 lateral mass causing severe compression.
Right now I am fit to be tied because the Indianapolis, IN ENT claims I don’t have Eagle Syndrome. I don’t think he knows what he is doing. The report says elongated styloids AND I am symptomatic. THAT is Eagle Syndrome. Is there some other definition out there? He claims that any surgery he would do would not help any symptom . Even if that is true (and it might be true), I still meet clinical definition. That note in my file causes other Doctors to think I don’t have Eagle Syndrome
I am getting disgusted and fed up with the medical profession
It’s possible that in the particular case the INR doc is reviewing (I didn’t take the time to read it so I could be wrong) the styloid wasn’t largely involved. Sometimes compression of the IJV remains even after styloidectomy because of the pressure from C1. It doesn’t sound like that’s true in your case though.
Have you considered getting a second opinion from one of the more experienced ES doctors on our list like Dr. Cognetti in PA, Dr. Hackman, in NC or Dr. Old in OH? If you want to see doctors who deal with vascular ES, Dr. Costantino or Coniglio in NY, Dr. Hepworth in CO or Dr. Nakaji in AZ would all be options. It sounds like it’s time for you to reach beyond the borders of your state since you’re not getting the help you need where you are. If you’re able to travel for medical care, that would be your next best option.
