So I’m seeing Dr. Hepworth, and he has ordered a cerebral angiography, which is scheduled for next week. Apparently a catheter shoots dye into the vessels in my brain, and it tracks my cerebral circulation and cranial pressure. I trust Dr. Hepworth, figure it’s going to give them a more complete picture of what’s going on. But the literature says the the procedure is safe, and the odds of it resulting in a stroke are “less than 1%.” Which doesn’t seem all that low to me, when you’re talking about a stroke. His nurse assured me they’ve had no problems, and I figure the odds of the procedure resulting in a stroke are much higher for people who are having it because they already have a blood clot up there somewhere. Anyway, anybody had one? How did it go?
Hi Bopper,
Glad to hear you have found Dr. Hepworth. I have had this testing with him and it was fine, no side effects or problems. It offers very important information for the big picture and ES. Be well!
Thank you, that is so good to know!
And probably dictated.
Please excuse typos, misspellings and just plain weird, inappropriate words.
I like to think I am relatively eloquent.
But Siri is often a drunken, blathering idiot.
Why was cerebral angiography recommended? Neurosurgery recommended it to me but I have Eds so risk was too high. I had an ultrasound which showed IJ occlusion. Ct venography was recommended but I then developed classic symptoms after using a kick board so I am heading straight to surgery.
Honestly I have no idea. My initial understanding was that the radiologist would do the test, and then perhaps balloon the jugular. But radiologist nixed that. I already have an ultrasound that shows IJ occlusion as well. But for some reason they want a fuller picture. I even called Hepworth’s office to confirm that this was the direction he wanted, and they confirmed. What is Eds, and why does it make your risk high?
What “classic symptoms” did you have? And what is a kick board? Stay well.
EDS is Ehlers Danlos Syndrome. Its a connective tissue disorder. Type III is hypermobility and most common but there are 5 types now, I think. One is a vascular type and can be dangerous. Many w hypermobility have a tenancy to lay down scar tissue easily and have poor healing of wounds among other things.
I think she means like a board you are on in the water…kicking
Like a wake board, boogie board, or a board u use in the pool to exercise on.
Pain w swallowing and yawning! Knife like and now feels as though something is stuck in my throat.
Hi Melcomcosh,
Have you tried contacting Dr. Samji’s office? You can get a phone consult if you’re not local to him. A copy of the CT scan & radiology report will need to be sent to him then appointment scheduled. He can diagnose ES from a CT scan. Medical insurance often pays part or all of a phone consult. Also, getting a second opinion is a good idea.
An MRV or MRA of the brain is used to look for any vascular blockage or compromised structures that may be influencing the vascular in your neck or other cranial pressure symptoms. If you did have something going on up higher and only the IJV was address you could have other complications. A Neurovascular Interventional Radiologist is the one to do any balloon or stent to the IJV if needed. The radiologist at the imaging center only reads the MRI’s and does not have the advanced training to do the treatment. Keep hanging in there, hope this is helpful!
Done! He agreed they were abnormal just wasn’t sure how much relief he could offer.
Got it. Thanks
Hi Melcomcosh,
No doctor will guarantee positive results w/ ES surgery. The multitudinous experiences of so many forum members here dictates that most people gain at least some level of symptom relief & some complete symptom relief. If your husband has bilateral ES, symptoms often remain after one styloid is removed & these will only go once the second one is gone.
I think part of the reason that doctors don’t guarantee results is because they have no way of knowing how well the irritated nerves will recover after surgery. Our bodies are designed to thrive & survive which is why they are constantly working to fix what they perceive is wrong inside. Sometimes those “fixes” cause more problems than they fix (e.g. ES). Getting pressure of the cranial nerves affected in your husband’s case will give them an opportunity to heal which in turn should decrease or eliminate his symptoms.
Many of my symptoms got worse after my first surgery because they were being caused by the remaining styloid. Once I had my second surgery, my overall symptoms disappeared abt 95% but it was a gradual healing process over many months after that surgery.
Thank you for the thoughtful reply; will let you know what we decide!
I am having this done as well, also recommended by Dr. Hepworth. He also recommended to balloon my jugular vein as it is compressed (also shown by ultrasound) but the neuro vascular doctor said he cannot do that until after this procedure and he has more info. Who is doing your procedure? I’m seeing Dr. Kaminsky (recommended by Hepworth.) I do not have an Eagle syndrome diagnosis yet but it is suspected (again, after being taken off the table last month) due to my symptoms and jugular vein compression. Dr Kaminsky brought it up today as a possible cause of my issues. I hope if you move forward that yours goes well and sheds some light on your issues.
Edit: after re-reading your post I am not so sure we are having the exact same procedure but the brochure I got also refers to it as a cerebral angiogram and says risk of stroke less than 1 percent. (scared me as well.) Hepworth called it a “venograph” or “venogram” so maybe it is different. They’re going to insert a catheter into my jugular vein to map it and measure pressure etc
Yes! We are living parallel lives! I am having the procedure on Friday. So I’m getting plenty nervous! Dr. Kaminsky is doing it. Measuring cranial pressure, catheters into my veins and arteries to map cranial circulation. Dr. Hepworth thought Dr. Kaminsky might do the balloon at the same time. But apparently Dr. Kaminsky has a different approach. I think, to probably oversimplify it, Dr. Hepworth favors the balloon even before removing whatever is compressing the jugular, because it’s less invasive than surgery but it sometimes works. Meanwhile, Dr. Kaminsky seems to believe that it is still kind of invasive, and has a very low likelihood of restoring flow when the occluding factor is still present. So he doesn’t do it. Again, probably oversimplifying.
I THINK I have an Eagle Syndrome diagnosis, at least according to Dr. Hepworth. I guess this test will tell us more!
Omg. I can’t tell you how relieved I am to have found this forum and other people on a nearly identical journey I am on! The way you explained it makes a lot more sense, the two doctors differing perspectives. I was so wigged out and anxious at my appointment with Dr Kaminsky today that I did not ask too many good questions. He seemed annoyed that I had not had better imaging (maybe a ct with contrast? Mine was without) and seemed to disagree with the conclusion of my ultrasound… he thought the compression could not be that far down my neck. I was disappointed that it’s just another test and not a treatment (ballooning) because I am so desperate for relief, but I realize the importance of getting more info. His office is doing insurance pre approval now and hopefully I can schedule soon. Please do message me or post here after the angiogram as I am very curious to hear about your experience. I will be thinking of you Friday and hoping for the best possible outcome! I did not find Dr Kaminsky’s bedside manner to be as great as Dr Hepworth’s but I’m sure he is more than capable considering he treats people whose lives are at risk.
Same! I was bummed about the balloon as well. That was why I agreed to see Dr. Kaminsky in the first place, I thought there would be an attempt at treatment. I totally agree on Dr. Kaminsky’s bedside manner. And yeah, he really didn’t say much to me by way of diagnosis at all. But I figure Dr. Hepworth is going to see these results, and I’ll consult with him about what next steps to take. I will keep you posted!!!