Hello, thanks a lot for the warm welcome via email. So I want to also share my story (I’ll try to keep it short and structured :-))
Since 3 years I am facing heavy dizziness on daily base, my whole life feels like in clouds. Brain fog, vertigo and many more symptoms developed over the time. TMJ and Neck problems also increased. But still, the 24/7 dizziness is by far the worst. Since day one I describe the feeling like not enough blood getting into my brain, like not really being present.
I saw a lot of doctors without getting a result and by accident I stumbled over the eagle syndrome as part of my own research. My doctor didn’t took my assumption serious, so I paid the CT on my own, and here we go. Both sides about 4cm, but especially the left styloid was very near to the TP of C1 (2-3mm). And as the Vein compression matched my symptoms to 100% I was very happy to get those bad boys removed to get back to life.
So 1st of March this year I was finally scheduled in Bonn, Germany to get my left styloid removed, everything went smooth, also I was told the IJV is now free. Unfortunately the symptoms did not improve till now, so I decided to go for another CT including contrasts to show the vessels.
The left IJV is still compressed to 2,5mm. This time the report says it’s compressed by TP of C1 and muscle structures (don’t know how they can tell that from a CTV, I thought it only shows bony structures).
- I am searching for people having the same problem, surgery did not help to uncompress the IJV
- Does anyone know which muscle might be the problem here (is it the SCM?), I am not sure how to work on it, and if it makes sense at all. Or is maybe C1 moved to the front, caused by bad posture?
- Besides that I also have slighter compression on the right side, which seems to be the thicker vessel in comparison to the left side. What do you think, would a surgery make sense here?
- I added also a picture in category “Others” showing some blood vessels behind C1. Those are not present on the other side. Do you think by body tries to workaround the compression here?
My problem is that the surgeon I went to is in fatherhood for the next 2 months, and nobody else is willing to give me any feedback. I know we are also no doctors here, but having some conversations/discussions always helps
Thanks for running this forum, it’s awesome to discuss with people being in the same boat.
I am somehow not able to add media attachments, will add them when I figured it out how
Left side (removed styloid):
Welcome & thank you for posting your ES story & the images. It looks like the surgeon you saw did a great job of cutting your styloid back to the skull base on the left side so it is not longer involved w/ the IJV compression. The TPs of C-1 look to be the main cause on both sides as your right styloid, even though still intact, is angled away from C-1 & doesn’t appear to be part of the IJV compression on the right (I could be wrong here especially based on the info you gave above about how much space is between styloid & TP of C-1). The muscles involved in compression would most likely be the SCM, but I recall there are others in the area that can also be a problem. I think @KoolDude has commented on that regarding another member’s CT images in the past.
Your right IJV appears to be dominant & thus drains more of the blood from your brain than the left. Many doctors assert that the human body only needs one working IJV to function well. Some of our members who’ve had bilateral compression, as you have, would disagree w/ that as they have found they feel much better after both are open & flowing.
The extra veins you see are most likely collateral veins that have developed on the left to help drain the de-oxygentated blood from your brain as your carotid arteries pump oxygenated blood in. It’s common to see these in people who have severe IJV compression.
I"m sure it’s discouraging for you that your surgeon is out on paternity leave for two months so you have no one who can really provide you w/ good medical answers. It seems resolution may require shaving of the TPs of C-1 to make more space for the IJVs, but it’s also possible there are other less invasive approaches since there are muscles involved, too. I can’t tell from your images how your cervical spine looks, but many of our members have “military neck” i.e. the lordotic curve is gone from the C spine. There are exercises that can be done to restore the curve. Here’s a link to one discussion on this topic, but there are others. @vdm did a lot of research on this & restored the lordotic curve to his C spine: "Military neck" (loss of cervical lordosis) relation to Eagle's - the missing link? - #5 by Isaiah_40_31
Do you mind telling us who did your surgery? If he’s not on our Doctors List, I will add his name.
Welcome from me again.
Unfortunately it seems there is no doctor for IJVS in Germany. It is very likely to get dismissed. Thats my experience why I finally went to see doctor Hepworth in Denver. He said that often times there is scar tissue wrapped around or strangulating the jugulars which he is removing with some good success. He also involves vascular surgeons for measuring and/or ballooning IJV during surgery.
Never heard that surgery is performed that way here.
Only real alternative to Dr. Heim in Bonn in Germany is Dr. Martini in Solingen as far as im informed. He worked in Bonn before and does ES surgeries in St. Lukas clinic now. Unfortunately there might also be no special care for IJVS there though, as far as I know.
One point where the german doctors started to listen to me a litte bit was, when I was back from US showing my Venogram results with Pressure Gradients. So if you mangage to get a Doppler-Ultrassound of the internal jugular veins from base of skull to clavicle and probably an accurate venogram with pressure measurements of the head and neck you might move a step forward. That’s what Dr. Hepworth requested for me too different times.
I recently had to get a venogram like that to check whether the second side needs surgery. Unfortunately they messed things up here in Germany again so I don’t know if the examinations are very useful. Obviously man has to make very sure that they definitely follow the protocol. My consequence is that I’ll stop any surgery or examination from now on when there occur changes from what was previously discussed. Like talking about venogram only and later doctor tells you while laying on the table he is also doing angiography through the artery… I should have stopped it because informational talk and consent into procedures have to be 24h prior the intervention. For the second time I regret now, but those Doctors are a bit sneaky, too.
Wishing you good luck finding good doctor for answers and take care.
Contact me if you have any questions.
Hi, & welcome to the site! So sorry that your surgery didn’t help with the IJV compression, unfortunately we’ve had a few members now who’ve been in the same position…
I’ve found some links to research articles posted by some of our very well read & helpful members which you might find interesting, seems there are several muscles which could potentially compress the IJV against the C1 process:
Omohyoid muscle and IJV compression - General - Living with Eagle
Small tricks to help Eagles with IJV compression - General - Living with Eagle
Article about jugular vein compression - General - Living with Eagle
My long journey to diagnoses of Jugular Vein Compression by Styloid & C1 - General - Living with Eagle
Hope these help!
Thanks a lot to all 3 of you for giving so much information, you guys rock! Really appreciate that!
I think for now I will stick to work on the muscles, I think it’s worth to give it a try for some weeks. As I am also hoarse (all the time), I think there might be some tightness in that area.
My surgeon was Dr. Heim from Uni Klinik Bonn, Germany. Didn’t had a look, but I am quite sure he’s already on your list
Here’s also a full picture of the cervical spine, but I guess while lying it’s also hard to tell. I don’t feel like having a military neck.
Already started to read some threads from your long journey, really impressive. I am honest at the moment I wouldn’t feel strong enough to travel to the U.S. It’s really a pity that it’s so hard to find somebody experienced.
Also Dr. Heim told me that he needed to remove a lot of scar tissues, as it was connected from my styloid to the cervical spine. Which sounded really good to me, especially it was written that the IJV is free afterwards, that’s why I am so confused.
Thanks a lot again for your offers and the helpful information.
That’s really helpful, that gives me new keywords to research thank you!
@Dersen, Your neck doesn’t look straight like military neck so doing the muscle work to see if it helps w/ the IJV compression sounds like a good plan.
Hi. Having the same issues. Had the left done 2x, the right done once. Dizziness is usually not from compression, it’s from the neck muscles being unstable and causing vertigo. Try using a stiff collar for 4 hours and see if that helps stabilize and reduce the dizziness.
Typically it’s the levitator scapula muscle and not the SCM. It can also be the trap muscles. When they go in they tend to stretch the neck muscles and that can throw everything out of whack. A good chiropractor can also help as the muscles become unstable the c1-2 and c5-6 tend to twist a bit and cause all sorts of weird health issues. Best way to tell is have them adjust. You should feel a difference within 30 seconds. If you don’t then that not the cause.
Interesting perspective, @Inegoti84u. There definitely can be a link between tight neck muscles, mis-aligned cervical spine & vertigo. Some other members have recommended a soft support collar to help reduce symptoms from carotid compression which helps reduce neck flexion & helps keep the cervical spine somewhat in traction. It sounds like a stiff collar could do the same thing. There are also some good YouTube videos that show how to do neck traction which could be helpful, but it’s vital to be VERY CAREFUL when doing things like that at home.
It’s certainly worth a try. It’s one of the few things besides trigger point injections that helps for me.
Interesting, I definitely feel that all of my neck and jaw muscles are very tense. In addition to that I developed cracking sounds in the area of C1/C2. That’s why (even before checking for eagles) I researched a lot for CCI. But all tests came out negative, I also did some work on the stability here (laser-pointer therapy and others).
I saw a chiropractor a few times, but it never helped me, unfortunately (he was also very experienced and very well rated).
Besides that I worked a lot on stretching, massage and trigger points therapy in the past, which all did not help unfortunately… It mostly worsens the symptoms. Nevertheless I fully agree with you that muscle tensions might cause such symptoms. Besides the mentioned ones, I’d also say that the suboccipital are very important, you can find a report here: How I cured my chronic headaches and dizziness
But all in all I just feel like there’s not enough blood in the head… tired the whole day and very dizzy/light-headed. When doing some sports I already feel the blood pumping heavily in the compression area. That’s why my assumption is still the compression itself, but for sure the muscles are connected and playing a big role, probably also the role of being the vein compressor…
Besides seeing a Chiropractor, is there anything helpful for you? Some exercises, massage or streching?
Is “Trigger Point Injections” something like “Dry needling” and does it apply to Neck area then (like Levator Scapula)?
Thank you for the link, @Dersen. I’m interested in myofascial trigger point therapy so there’s good information there for me.
Since you have compression of your IJVs, you have the opposite problem of not enough blood in your brain i.e. too much blood in your brain. The IJVs allow de-oxygenated blood to flow out of the brain so fresh oxygenated blood can flow in from the internal carotid arteries. When the blood flows in faster than it can leave, intracranial hypertension (high blood pressure in the brain) can result which can cause the types of symptoms you have. You’re right about “not enough blood in your brain” from the standpoint that you don’t have enough freshly oxygenated blood there & that likely gives the sensation of a blood deficit.
There are a number of handheld electronic massage tools available now. @TheDude recommends Novafon https://novafon.com. Something like that might be worth looking into. There is a German website, but I don’t know how to find the link for it.
@Isaiah_40_31 so many good tips! I have a purewave massager (link below) and it has a vibration mode. Just used on my head and jaws and had a pressure release (cerebral spinal fluid)… another tool to use )). (No clue how this compares to the novafon unit but the vibration is mild and ‘I think’ it helps). TY!
Thanks for the correction, you are absolutely right.
Funny, I bought the Novafon before approx 1 year
But till now, I can’t say that it helped very much.
I was able to have talk with doctor doing the CTV images. They told me they can clearly see a muscle pressing the the vein against C1. Of course they can’t tell if the vein would be normal if the muscle wouldn’t be there. She also told me it’s “Musculus Stylopharyngeus” which is quite new to me.
Isn’t this the one which was removed, while surgery?
Will have some research about it now.
Besides that I also read that unfortunately Dr. Heim won’t come back to Uniklinikum Bonn after his parental leave (it’s not known what he will do afterwards).
a bit small, but here you can see both, the Ligamentum and the Muscle:
Usually the muscles & ligaments attached to the styloid will be removed from it so it can be shortened or cut back to skull base, so as you say you’d expect the stylopharyngeus to have been detached from that end, and in which case it shouldn’t be able to compress the vein? Normally I’d suggest that not much of the styloid had been removed but obviously you have your CT to show it has…
Just rechecked my surgery report, I found that the ligament was removed. I find nothing about this muscle. But I agree with you, looks like it’s also attached to the styloid - strange
I found a PT who was trained in neuro and they spend a lot of time working on trigger points in the neck and around the dorsal scapula. I’ve found that when the styloid moves around in the neck it causes a lot of inflammation in tight spaces including the Vegas and Accessory nerve. Both of which can make it feel like you’re short of breath or not getting enough blood to the brain. General compression that can’t been seen on an X-ray or ultrasound is almost zero. I’d suggest you consider the mechanism of action of everything and not assume it’s just as simple as straight compression. In my case they have done the left side twice and I am lining up for a third. Not so much because of the styloid, but because of the scar tissue hittin and rubbing the nerves which then fire off and cause muscle spasms and extreme pain with localized pain. In fact, my case is so bad the muscles are so tight it has caused 24 degrees of thoracic scoliosis.
WOW @Inegoti84u! It’s awful that you have scoliosis from tight muscles. When you finally get the pressure off the accessory nerve, is there any chance w/ PT you can get some correction of the scoliosis? I can’t imagine how uncomfortable you must be!! I hope your next surgery is the final one you need!
Thank you. I certainly hope so. Time is of the essence though. They are going to try Botox to release the Trap. Surgery has a greater chance if the muscles are not so tight
That’s so tough keep needing surgeries…there have been some discussions on here about scar tissue & in particular cold laser therapy which is supposed to be helpful. Is that something you’ve tried?