So the saga continues. I finally found a Dr. here in France less than 3 hours away each way and although she said she didn’t know about the ‘jugular’ type of ES which I apparently have based on my research and help from this forum, I decided not to cancel the appointment and see if she was any better than the other 2 clowns I saw closer to me. She wasn’t at all knowledgeable about my symptoms (which can also be cause or related to other things) BUT she seemed willing to learn and listen. Of course, b/c of my intense brain fog, I forgot to bring my papers, some of which were excerpts of studies from Europe that talked about jugular or vascular ES and how my symptoms fit (but I did bring the electronic files which she wasn’t able to open during the appointment so I left them). The big issue that is that my 3D renderings of my 2 CT scans show NO flow of the left internal jugular vein while the right is enlarged. She said the styloid will continue to get thicker and so even if I don’t have problems now (I do) it will only get worse on the right side. She also believes anatomical differences can cause someone to have ONLY one jugular but it’s unusual. The ultrasound the first dr. did showed the left jugular flowing in the opposite direction (assuming he was doing it correctly) and after a c1 adjustment, he did it again and said it was flowing down on the left (but no improvement in symptoms and 9 more adjustments had me give up on that approach). So apparently it does flow on the left too. This new dr. thinks 1) I could just not have a normal flowing jugular on the left and I think 2) it should be evaluated differently to see if it is pinched off by the styloid and c1 so that virtually nothing shows up in the CT scan. So is it even possible for someone to have virtually NO flow on one side of the head (seems that we are given 2 sides for a reason)?? My carotid foramen is very large on the right and small on the left but I’ve just learned from diagrams online that the jugular doesn’t actually go through that hole but the carotid does and joins the jugular and vagus nerve in the carotid sheath. Is that right? My 3D rendering DOES show venous flow through the sigmoid sinus on both sides, which seems to flow and connect with the jugular foramen so why the jugular would disappear on the left is beyond me (and also this dr. but she is willing investigate further, which is what I want. She suggested just doing surgery on the right side but I don’t want to have to go through surgery and a 5 day stay in a hospital just to do it all over again if we haven’t cut off the correct side and it makes no difference. Another question is what would be a better test than another doppler to asses the jugulars on both sides? Is the doppler just an ultrasound test? I have to wonder about my carotid to since the holes on either side are vastly different sizes. Why would this be? My pain is almost all on my right side but it used to be all on the left for many years. Any insights are much appreciated. Thank you!
First off, I’m so glad you’ve found a doctor who is interested in your situation & willing to do the testing to help you choose the best course of action to resolve your symptoms.
I can partially answer your questions but in spite of many in depth discussions by @KoolDude, @vdm, @boogs99, @coldbear & some others, & links to articles about IJV compression on this forum, I am still not very literate. From what I do understand, many people have a dominant IJV on one side w/ a minor IJV on the other side. When the dominant side isn’t working well, the other side will try to take over, but because it’s smaller, it usually can’t completely fill the role so collateral veins on the dominant side attempt to take up the slack. In most cases when the dominant IJV is compressed, IIH & other symptoms appear in spite of the body’s attempts to divert blood flow from the brain through other avenues.
I understand your concerns about surgery but will say that many of us who had bilateral ES found that our symptoms didn’t subside fully until both styloids were removed. My most symptomatic styloid was removed second because my surgeon was concerned about the angle & thickness of the one he took out first. I argued w/ him up to the time the anesthesia was administered for my first surgery. In the end, his decision wasn’t so bad after all as some of my more challenging symptoms began recovering after that first surgery.
It is likely that both styloids are contributing to the symptoms you have & removing one side won’t be a cure. It can take some months post op to have a good idea of what symptoms are resolving & which are probably being caused by the remaining styloid. Nerves & vascular tissues can be very pokey to heal.
Thank you. That is helpful. I’m sorry you had to argue up until the time of anesthesia! I would rather have them both removed b/c as she said, they will continue to thicken and grow over time and will eventually become more problematic. It’s impossible to tell what’s causing what and I don’t think the ultrasound she wants will be that illustrative, although I will ask that they take scans with my head in different positions to see if that causes an obvious change in the flow on the left (assuming they can see it) vs. the right. I think they should scan both sides. Do you know if they can see a difference in size, pressure or speed of flow between the right and left with an ultrasound? Sorry, what is IIH?
Like @Isaiah_40_31 , I’ll leave it to others more knowledgeable about anatomy to answer most of your questions! IH is Intracranial Hypertension (IIH Idiopathic Intracranial Hypertension, i.e. no known cause), often seen with those of us who’ve had increased head pressure from the compressed jugular veins.
So pleased for you that you’ve found a doctor who will listen to you & do more testing! Has she done many surgeries do you know?
I can understand that you don’t want to do surgery twice, but having both at once is quite tough, lots of the experienced doctors don’t do both together because of the amount of swelling. So if the doctor is only happy to do one side at a time, I’d accept that.
Hi, a few thoughts to try and help answer somel world yes we of your questions. In an idea do have 2 jugular veins that’s are not compressed. But if y
Oh have VE
But if you have ves then one or both of your JVs may be compressed, with by C1, styloid or both. My JV compression was first diagnosed by a CT scan with head turn, also MRI.
National Neuro centre at Queens Sq London told me some people are only born with one JV and that some patients do function with only one JV. In my case it’s been clear I need both JVs to function.
If you have VES then you need styloid removed to skull base in external operation by ENT. You may need C1 tubicle trimmed if it is compressing JVs. A neurosurgeon trimmed my C1 tubicle.
iHH means intercranial hypertension. In ves it’s caused by abnormal fluid being trapped in skull, often blood that cannot escape as JVs compressed. This causes high pressure headaches and affects brain which does not cope well with extra fluid inside confined space in skull. ICP monitoring can show IH and Venogram of brain may help to identify where high pressure is most affecting brain.
An accurate diagnosis and finding experienced & skilled surgeons are vital but difficult steps.
If you could travel to London There are medics who might help. Good luck. D
The doctor should be able to see a difference in size of veins & speed of flow via an ultrasound, but I don’t know about pressure. That probably requires a venogram. The other critical part of this is that you’d need to have the ultrasound or venogram done “dynamically” i.e. w/ your head in different positions to look for differences in blood flow in different positions. Often these are only done in a static position (usually neutral) which often doesn’t show that there is IJV compression.
jtelieia,
Although this doc is open to listening and good for picking her brain for more info, the fact she doesn’t have knowledge and experience in IJV compression would take me on the path to seek someone out that does. Even if it requires a consult outside of France. You may be able to send your records and scans out of country and pay for an expert opinion to make sure you are on the right track? Doppler is essentially the same thing as ultrasound. Although it is helpful, not the gold standard for this type of evaluation.
You referenced flow measured and adjustments, Im assuming you were being adjusted by a chiropractic professional. If so, i would keep in mind the level of expertise in their profession and take it with a grain of salt. This is beyond their level of expertise.
I agree I should consult someone with experience with the jugular type and already did–a doctor in Germany that is known on this site. I will have to contact him again but he, and every other dr. outside of France that I contacted, all immediately said surgery, both sides, but I am not convinced it will fix my issues since they are complex and related to many other possible causes which these doctors don’t know about at all. However, this dr. in France has never done surgery on someone with a jugular issues so yes, I am very reluctant to be her guinea pig. She said the styloids will keep growing, getting thicker and I can’t imagine how anyone can have them and not have some sort of problems. I’m not keen on a 5 day hospital stay in a place I don’t understand the language, by myself since it is so far away from our home and we have dogs and a cat we can’t just leave and they are sick and old and I can’t place them in a kennel. I don’t have anyone who can come and stay at the house for that time period.
Have you heard of the styloids continuing to get thicker? They are plenty long already but if they get thicker, that will put more pressure on the jugular, vagus and carotid.
yes, I also agree the atlas orthogonal chiro that did the first ultrasound is not really fully qualified but he did consult a thoracic surgeon but he didn’t keep the files of the ultra sound going the wrong way so I have been advocating for another one for a long while.
I think i understand most of your acronyms but ICP monitoring is intercranial pressure monitoring? What is this exactly? What kind of specialist does it? The CT aniogram did the whole head but is that different than a venogram? Thanks for getting back to me.
Part of what makes me doubt this whole thing is that I don’t have headaches, or migraines all the time, nor do I have intercranial pressure or all the other issues ALL the time. I do have chronic fatigue, brain fog, pain in my shoulder, neck, back and hip all the time, among other symptoms. Why would this be if the styloid is always affecting me? Thoughts? I am looking for a way out of this surgery, lol.
Hi, ICP monitoring is done by a Neurosurgeon. I had mine at Queens Sq in London.
I think accurate diagnosis before any surgery is vital but is never easy.
If you are in Europe & looking for atlas orthogonal expert I’d recommend Dr Iain Smith at Newport Chiropractic in Shropshire, he has special scanner for diagnostic work & is very expert.
Based on your symptoms I would look in to Atlas instability (can cause brain fog/widespread muscular skeletal issues ( one shorter leg, shoulders & hips tipped so no longer even), JV compression (styloid or C1). Hope you can get the help you need. D
Thanks. I see a neurologist next month and I will check but I believe the ENT consulted a neurosurgeon. I did see an AO specialist in the US and that led me to finding one nearest to me in Girona. Had 9 treatments with no effect and even the FL dr. said I should not keep throwing money away on it. Others have said there should be exercises to help with stability, none of which either chiro mentioned.
