Hello all,
I’m still new to this group and thought it would be the right time to share my story with some of my scans.
It was more than a year ago that I started to get tachycardia at nights as well as eye pressure. Its been even longer that I’ve had digestion issues and can’t gain weight. I would also start choking on water on a regular basis. Its been even longer that I’ve had symptoms of fibromyalgia. Well last year I was seeing a chiropractor who gave me deep and violent thrusts to my upper thoracic area as well as the usual neck cracking. I also was doing Invisalign at the time for teeth problems which set off my sympathetic nervous system. Then after I moved back to Florida in July 2023 within a week of the move, one night I got intense tachycardia, increased heart rate, sensitivity in the left side of the neck, extending into the shoulder area. All my organs felt like they were aching and my whole nervous system flamed on. My eye sight got blurry, I felt very tired, had intense brain fog and could barely eat anything because of digestion and swallowing problems. It was terrifying.
Well I went to the ER and they found no heart problems. I had another episode a month later and no issues were found other than high anxiety and GERD. I was left feeling so weak I could hardly go up or down a flight of stairs nor eat solid foods. My primary care put me on Omeprazole for GERD and Diltiazem for the blood pressure, both of which helped me, but the GERD medication shut down my stomach acids that even a little bit of food stayed on my stomach for hours. it also gave me intense back aches. It was bad enough that I went down to 114 LBS. And I felt like I was dying. I believe I had gastroparesis, at least that’s what Mayo Clinic said.
In the coming months, I went to countless doctors, gastroenterologist, cardiologist, pain specialists, a neologist, an AO chiropractor and an acupuncturist. Both the AO and acupuncturist helped me the most. I scoured the internet for answers and the only website that gave me a clue to my issues were from Caring Medical. Boy that was information was an eye opener and realized my issues had to be Vagus nerve related.
I got an MRI and X-rays that showed nothing unusual except problems in the C1-C2 discs.
Early this year I went to a chiropractor who did a DMX X-ray study and showed CCI of the neck. Later I went to another doctor in southwest Florida whose DMX showed something I had never heard, elongated styloids as well as an ultrasound that indicated compression of the jugular veins. Later after neurological testing, my neurologist diagnosed me with Dystautonomia and POTS. Of all my symptoms the blood pressure, tachycardia, dizziness and nerve spasms are my worst symptoms.
Last summer I got a CT headscan and it indeed showed elongated styloids. 3.5cm on the right and 3.2cm on the left. It was then that my neurologist suggested that I go see a specialist at a top medical university who would know best how to treat the elongated styloids(Eagle Syndrome). And I have a consult with Dr. Hackman in North Carolina next month. In the meantime, I’ve been seeing a neurological specialist group, more like a naturopath, in order to deal with the sympathetic vs parasympathetic nervous system problems.
My AO helps alot, to get the C1 back in alignment. When aligned my symptoms are cut in half and no bad tachycardia-until it goes out of alignment again. Of late I’ve had an ultrasound of my neck which showed clear aortas, but a compressed left jugular vein. The last CT scan I got with contrast, which I’ll post below, doesn’t clearly show compression, but I see a very thin IJV on the left compared to the right. Unfortunately the scan doesn’t show below the 3rd or 4th neck vertebra. The frustrating thing is the last scan I got, the radiologist didn’t even indicate I had jugular vein compression. Nor could by my neurologist see anything because my scan was done laying down. Upon further analysis I think I can find where the compression is, unless I’m seeing things incorrectly. And I would appreciate the feedback on what you can see. I have a feeling i’m going to have to get more scans in order to pin point the exact cause of the compression
Hi @MisterFrodo - Thank you for sharing your story in such detail. I’m very sorry for all you’ve been through but am glad you kept looking for answers until you got some that make sense & align with the symptoms you have. Dr. Hackman is very experienced with ES & should be very helpful for you. I’m glad you’re having a consult with him.
Many people have a dominant & non-dominant IJV. I suspect in your case, your right IJV is dominant & your left is non-dominant. Your left IJV has a bit of a steep downward turn back toward your the transverse process of your C1 which is probably the cause of the IJV compression on your left side. The head position in the imgaging does make it appear you have a good amount of space between your right styloid & C1, however, since you have CCI, it’s possible your extra neck mobility closes that gap w/ head movement causing the right IJV to also become compressed.
I also notice that your cervical spine is exceedingly straight. The cervical spine is supposed to have a lordotic curve which forms when you’re a baby doing “tummy time” & holding your head up & back. As adults, we can lose that curve by spending a lot of time looking down at cell phones, computer screens, books, etc. A very straight neck brings the styloids closer to nerves & vascular tissues in the neck. There are exercises that you can do to help restore the natural curve, but it’s a slow process & requires diligence. @JugularEagle has posted a link to a video by Kjetil Larsen that might be helpful for you: https://www.youtube.com/watch?v=_FLe3_jmt3I
@vdm also posted quite a bit about this problem among others:
I’ve annotated a couple of your images but am not sure my comments tell you anything you don’t already know.
I agree with @Isaiah_40_31 so can’t add any more to that!
Here’s a link to a recent discussion about vagus nerve compression & the effects of that which you might find interesting:
Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
I hope that you can get some help from Dr Hackman soo, sounds like you’ve been feeling awful for long enough!
Thanks and I will check out those links.
Is there any kind of CT or MRI scan that can show which nerves are getting compressed? I was in the incline position, so who knows what it would show if I was seated with a neck flexion scan.
A dynamic CTA/V or ultrasound of the internal carotids & internal jugular veins can show compression. Dynamic means the scan is done with your head in different positions (looking up/down, left/right) during the scan or test. You don’t need to be sitting.
In an ultrasound, if it’s done to determine if there’s compression in the vein/artery, blood flow velocity is measured at various points between the skull base & collar bones. You can search for Dr Hepworth’s ultrasound protocol using the magnifying glass search tool. It’s the best for measuring blood flow velocities.
We’ve been talking about this quite a bit recently- apparently a special scan called a FIESTA MRI can show the cranial nerves where they exit the skull base & may show if there’s compression, but it seems to be pretty hard to get done…here’s a link to a recent discussion with a bit of info:
FIESTA MRI Information - General - Living with Eagle
Not if you are in India. Pretty easy to get at less than $60 US dollars for the 3d Ciss mri which blows my mind. Both the cost and the access to it. Of course, who knows how skilled they are. Some places in the US will do an MRI for less than 300 but i dont think i would trust them for a brain issue or Eagle Syndrome. I cant even trust a teaching hospital to get it right.
However, you could get the scan and then get a second opinion. I am going to contact some of the order your own MRI places in US and see if they do it.
I’ve already had a full ultrasound of the neck. The arteries seem to be fine. The compression seems to include the vagus nerve and the left IJV. In fact I got a workout in today and as much as I try and take it easy, the tachycardia set in once the heart rate got too high. Then my stomach starts to give me more issues. With all this I don’t know how many years I can live like this. I think the next step beyond Dr. Hackman is finding getting a doctor who understands the veins and venal compression.
The experienced vascular ES surgeons most members see are Dr Hepworth in CO, Dr Fargen in NC, Dr Nakaji in AZ & Dr Costantino in NY if you did want to look into VES more…
So here is a little update on the Fiesta, Fiesta C, Ciss, etc.
In Indianapolis, IN sometimes you can easily talk to a radiology dept. to ask questions but at some facilities like Indiana University you hit a brick wall with them telling you the Doctor has to talk to them. I have gotten around that a few times but it is difficult.
I called Community Hospital. They put me through to talk to technician. He said that it cannot be done after the fact on an existing MRI. However, he readily knew what I was talking about and said yes they can do it.
I called Affordable MRI who does the cheap MRI. They cannot do it but they at least knew what I was talking about in my questions.
My conclusion is that this is not as rare as we seem to think but you have to get to the right person. The ENT office at Indiana University didn’t even know what I was talking about when I asked for a Fiesta MRI. Since at that time I didn’t even know what it was I didn’t push for it. My mistake.
I think for people just starting to deal with this if you are in the US dealing with a major facility in your area you should be able to get it. My recommendation is first talk to the radiology dept. if you can and verify they can do it before you ask the Doctor for it. You then have the info to try to convince Doctor why you need it.
Still feel it is an uphill battle as most things to do with Eagle Syndrome (unless you are in India when you can easily get it done)
Yes.
I’ll be curious as to what Dr. Hackman has to say about it. I have no clue, I’ve never flown out to a specialist before for any kind of procedure. But my issues are certainly vascular in nature. The Dysautonomia(disorder of the sympathetic nervous system) is a whole other issue.
Thanks.
This Eagle Syndrome patient had Dystonic Storms which I think is different than your issue but kind of in the same areas of issues. His surgery got rid of them.
. Dr Osborne indicated he had only seen that in two patients. I can’t imagine what this man went through but he clearly emotionally felt what many here feel while they are dealing with this. He said he had been to 9 Doctors. I bet quite a few of us have in beat in the amount of Doctors category!!!
Beware this video shows actual surgery. Every time I see one of these it is a reminder that I need the best I can get to do this operation!
Absolutely. This is no simple operation and you need the best. The neck area is complex. And this is what scares me because my Dysautonomia is problematic and any aggravation and surgery could lead to a full blown nervous system overload. I had a bad bout today.
The one thing I learned from the recent Nakaji surgery is that nerve monitoring may be crucial. Expensive but crucial. I think your surgery would be one that shouldn’t be done without the nerve monitoring.
I’m sorry you had a bad day today, @MisterFrodo. I’m glad it’s not too long until you see Dr. Hackman.
Thanks. It was not fun. Tachycardia, digestion problems and dizziness. It finally dawned on me to drink water with sea salt and that totally brought everything back to normal levels. The nervous system disorder, which could be due to Vagus nerve compression and certainly the compressed IJV, is the worst part of this.
@MisterFrodo - Great insight that you might be dehydrated. I’m glad it was an easy fix. Keep that one in your back pocket for the future as it could be useful even with a different combo of symptoms.
Yes thanks. The surgery video was hard to watch at times-made my neck hurt. I wish this doctor was on the east coast. I have no idea what to expect from my consult with Dr. Hackman. This is uncharted territory for me. All I can do is tell him my symptoms, how I’m dealing with the Dysautonomia/POTS, the vein compression, my concerns and defer to his expertise. I have no expectations that he will suggest surgery or be against it or send me to consult with someone else. It’s an adventure I’m on with some some radical twists and turns.
Dr. Osborne doesn’t treat IJV compression per se. His videos are impressive, but there are other US doctors who are equally talented in treating ES especially for those who have vascular compression.
Do you know, since I have IJV compression on the left side, more than likely my Vagus nerve is also compressed? My scans don’t show the nerves. With all the treatments I’ve had the past year, the Vagus nerve symptoms never seems to get better.