Newbie... This seems to be me as well. Would love input on my x-rays

[Leah]

Like most of you, it has been a long and challenging path for years. Will fill in on that as I can. We suspected this and had a previously scheduled appt with an oral surgeon … jaw and face hurt (((. Went for botox in jaw and temporalis… grateful for a layer of pain relief!.
On the (circular?) x-ray, asked him to show me my styloid. He said they were normal, then, no they are long, then they are twice as long … and then backed up next day (he is a friend) and said wasn’t sure.

My problems are all on the left; complicated by a bad cervical spine from a car accident. So as soon as I’ve said I have a C spine problem, that has been all they want to look at and assume it is the problem (even though C6/C7 fusion was minimally helpful… and my pain at C1 was never assessed or addressed. I have been told by ‘gentle’ chiropractors that C1 is unstable. Then have asked two of my Physical Medicine and Rehabilitation docs if it could be twisted causing my ‘fork in neck’ and both said no.

Anyhoo, looks like right side styloid is broken ?.. Can you advise on left… clearly not terribly long, but looks to be at C1 (and if so is that elongated?) Having a hard time judging from anatomical images. I have a range of symptoms and suspect vascular affected.

TIA this forum is a miracle. So grateful.

[Jules]

Hi & welcome to the site!
I’ve had an admin fiddle , so try & see if you can upload your x-ray images…yes, you’re right that initially you can’t upload images!
Thank you for sharing your story, so the botox helped a bit with pain relief?

[Leah]

Thank you and yes, botox for the muscle spasms has been helpful. Unfortunately it is not covered by insurance. However, botox is reimbursed by Allergan (botox rebate) with specific diagnoses … migraine is one of them. Believe it covers $1000 worth of botox 4 times a year.

BOTOX® Savings Program

[Isaiah_40_31]

@Leah, Thank you for the link to the Botox “financial” aid. I’m sure it will be helpful for our members.

Regarding your styloid images, the left one does appear long & very pointed. The right looks to me more like your styloid might be a little long, but further down, your stylohyoid ligament is calcified - as opposed to the styloid being broken (though that could also be a possible scenario). Usually when a styloid breaks there isn’t such a big gap between the two pieces because there are muscles & other soft tissues in the area that help hold things in place.

We also know from experience that styloid length isn’t always the key feature of a styloid process that causes problems. Thickness, angle of growth, how twisted or curved it is, & how pointed the tip is can all contribute to problems. Since your cervical spine is already compromised, there’s a good chance that your left styloid is contributing to your symptoms. If you’re having migraines, there is a possibility that you have vascular compression of either the internal jugular vein (most likely) or the internal carotid artery. Getting a diagnostic CT scan w/ contrast to look both at the styloids & the jugular veins will be helpful. Sometimes vascular compression occurs more obviously when the head is in certain positions. If you find looking left/right, up/down, or up/down diagonally increases your symptoms, then request that your doctor have at least part of your scan done w/ your head in that position.

I’m glad you’ve found this forum helpful! I also benefitted greatly from the information here in my time of need.

[Leah]

Thank you so much for the quick review! I’ll write this up at some point as my journey has been ‘interesting’ …but briefly, never heard of this and I’ve been on top of my spine issues for 20+ years, so very surprised to learn of it.

But I found out as I went to my massage therapist last Saturday. Told her of my acute pain and how it started… we couldn’t figure out how I could lay down, as no position is comfortable… Finally ended on my back with support under my head. She began pulsing the edges of temples ever so slightly … and my pain abated. I said what are you doing and she said I"m moving your styloid bone. And wow!! I was relieved of pain. Looked it up the next day and was shocked about this.

Told my massage therapist she saved my life. My situation feels quite acute … as I have passed out a number of times… in certain positions… so it’s irritating the nerves and likely a vein. Being careful with my head… aghhh .

All the best,
Leah

[Isaiah_40_31]

Leah,

Passing out may indicate ICA (internal carotid artery) compression. Do you ever get facial numbness or TIAs (mini strokes) or symptoms that feel like part of your face is frozen? If so, it’s really important for you to get that CT scan w/ contrast ASAP!! We have many members w/ IJV compression which makes like very miserable but is not life threatening from a “mechanical” standpoint. The IJVs allow blood to drain out of the brain so when they’re not able to drain well, intracranial hypertension is the result. The ICAs take blood to the brain, & when compressed by the styloids, a clot can form that can cause a stroke (blood carries the clot to the brain via the ICA). This is extremely rare but does happen. I don’t mean to scare you but it is important to get this looked into sooner than later.

[Leah]

Thank you. Was evaluated at the ER when this episode started and they checked the arteries via MRI, and no to facial numbness or TIA to my knowledge… I also had a brain CT w/o contrast…they said for stroke (?).

As I have learned more, this is exactly what I have been thinking. My internist (again prior to this info) thought I was having a vaso vagal response to my neck pain…and now of course I’m suspecting compression. I’ll address asap in the am with internist and watch for any issues. Wearing my neck brace and sleeping with wedge on back (thanks to this forum)…

[Leah]

Have an appt with this Dr at Emory in Atlanta on May 9. Suppose if CT is indicative of vascular compression I can be seen and treated as an acute case (?). I do feel head pressure both internally and externally.

Based on ER reports (weeks ago prior to knowledge of ES) was thinking the pressure was migraine (which I don’t have… was being treated for migraine type pain…stopped the treatments (Botox for migraine)) as told them thought my problems were structural in nature (my neck) and began pursuing neck again.

John M. DelGaudio, MD

[Jules]

We haven’t been told of anyone else seeing this doctor I don’t think, but he sounds like a good bet as he’s obviously used to working in the skull base area, let us know how you get on!
If he is interested, we have some suggestions of questions to ask doctors in the Newbies Guide Section under Surgery, here’s a link:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle

Interesting about the idea of a vaso-vagal response- the vagus nerve can be impinged by the styloids, so maybe it could’ve caused this? Either that or as @Isaiah_40_31 says from vascular ES…

[Isaiah_40_31]

@Leah - I recognized Dr. DelGaudio’s name so I searched him using the magnifying glass icon. There are several discussions written by people on our forum who saw him &/or had him do their ES surgeries. Below is the link to one that will be of interest to you, but you can search for others as well. A bit concerning is @eddieh 's comment that Dr. D doesn’t believe in vascular ES. We have another very experienced ES surgeon on our list who is also of this same opinion. Unfortunately, it’s very close-minded of them. I vaguely remember removing Dr. DelGaudio from our doctors list because his incidence of misdiagnosis (i.e. blaming symptoms on things other than the styloids) was pretty high. We try to keep doctors on our list who don’t tightly define ES based only certain symptoms & who acknowledge that vascular compression can be a component of ES. That said, it’s still worth having the consult as perhaps he’s changed his mind on that topic over the last few years:

Misdiagnosis

I thought LPN or reflux for me at first also - negative test. I then went to Del Gaudio - it appears he doesn't believe in the vascular form of Eagles. I think he published an article on Eagles that supports his view. The CT scan I got throuh his office states that the styloid processes were equal in length but did not state the specific length. I went on to be Dxd with GPN. Then had MVD which has helped a bit but overall highly disappointing...still in bad shape. My symptoms fit the profile …

[Leah]

Oh very interesting. Thank you so much for that search. I did not see his name when I looked earlier for doctors, but I did not use the search tool. I will do some further Searching in our area.

And I appreciate so much your input, I do have a question regarding vascular ES. With little that I know I’m was thinking the reduction of the styloid would resolve the vascular compression. So I’ll keep looking, but if you have a quick, easily accessible (for you), bit of info on why I need someone familiar with the vascular problem, would love a Headstart. TIA (no pun intended🤗).

[Isaiah_40_31]

Usually, if it’s the IJV that’s compressed, it gets sandwiched between the styloid process & the transverse process of the C-1 (or rarely C-2) vertebra. In some cases, the bigger problem is the TP of C-1 so removal of the styloid doesn’t really help & the IJV needs to be moved over a little or the TP of C-1 needs to be shaved down a bit. There are VERY FEW doctors in the US who do the C-1 shave, I think (my opinion) the long term consequences are unknown. It’s a more common practice in the UK. For many of our members, just having the styloid(s) removed was enough to allow the IJV to re-open.

Some of the doctors on our list don’t believe that vascular ES is a different problem than ES itself so they don’t operate w/ an eye to seeing the IJV re-open after the styloidectomy. This is a sad misstep on their parts.

Dr. Hepworth & Dr. Costantino both have a vascular surgeon on hand in cases of VES. Dr. Hepworth’s vascular assistant will balloon the IJV if it doesn’t open when the styloid is removed. Dr. Costantino’s is there for C-1 shave but perhaps also to do ballooning if necessary. Dr. Hackman also has helped quite a number of our VES members but he operates w/o a vascular surgeon at hand.

[Leah]

Thank you so much, that makes sense, and I understand that anatomy. If it is primarily the C1 or C2, Does that show on imaging so that we know what we’re dealing with prior?

[Jules]

It should show on the imaging…
Sorry for my post about the doctor, glad @Isaiah_40_31 remembered previous posts!

[Leah]

Jules, thank you… Believe Isaiah was referring to Dr. Delguardio at Emory … Not Dr. Gupta … ))

[GCD]

Hi @Leah,

I included some pictures of what to look for on MRI and CT from my own scans. The MRI is with contrast so the blood and therefore the veins and arteries really stands out. The CT does not have contrast and will only show bony anatomy.

Image 1 - For the MRI slices I gave both the sagittal (side) and axial (top down) views with the locator line in yellow to show where along the cervical spine the axial shot is. For me its obvious that at C1 the left IJV is mostly compressed by the transverse process of C1 and stuck between the styloid. You can see the indentation of the transverse process pressed into the IJV to make it crescent shaped. The indentation of C1 is the blue directional arrow and the IJV distorted morphology is outlined in blue as well.

Image 2 - This slice is lower around C2 and the IJV opens up to a more rounded shape and typical diameter of 9mm. From searching around online, I found a normal IJV diameter should be around 10mm. That doesn’t mean that if your just under 10mm that your going to experience IJV compression related issues, but if you are under 4mm on both sides then it’s probably worth looking into (I’m not a physician, just what I have noticed from the research I’ve done online).

Image 3 - This is a CBCT, I included this type of scan as it’s very accessible, cheap and a great screening tool for diagnosing IJV compression and elongated styloids. A CBCT can be taken in most dental offices and is covered by insurance every year (at least partially depending on your dental and medical coverage). CBCT is great for looking at bone, you can clearly make out C1 and the styloids and measure them. My left side is below 2mm and the right side is about 2mm, which corresponds to the MRI images above (left and right is reversed when looking at axial images on CT and MRI).

Image 1 Sagittal and Axial MRI - At C1 IJV compressed

Image 2 Sagittal and Axial MRI - At C2 IJV not compressed

Image 3 Axial CBCT

[Leah]

Hi @GCD Thank you so much! On the CBCT does that mean your styloids are too close to your C1 transverse process and therefore they intersect when turning your head? And TY as I don’t know about CBCT. Will call about that. Wonderful explanation.

So I’ve had recent MRI for my cervical spine … safe to assume my scans would include these images?
Have you had treatment?

TIA!

[GCD]

Hi @Leah

The MRI was taken lying down and the CBCT was taken sitting straight up. I probably spend 95% of my day in those 2 positions.

My styloid probably grazes the C1 transverse process as I rotate my head. But I think because of the general rounded it shape, I don’t hit it with every small movement. I had testing done with Dr. Patsalides to see what positions creates worse pressures in my head. Turning to the right is bad and looking down is really bad, so I would assume that in those positions the bones are probably in contact and totally crushing the IJV.

The MRI I shared was a cervical spine MRI, but I specifically asked for contrast when I had it done. If you had that MRI taken and they didn’t inject contrast into your blood stream, it will be harder to see the arteries and veins. However, on T2 or Stir MRI sequences, you should still be able to make out the IJV. Also, with the cervical scan I was lucky that the last few slices showed my IJV stenosis. If I had shifted up another inch in the machine it would not have captured it, so hopefully your scans go to that height on C1.

My surgery is scheduled for May 16 with Dr. Larry Lo and Dr. Constantino in NY.

Feel free to message me if you need help looking at those images.

[Leah]

@GCD I am really blown away with what I"ve learned for you all in a week … after years (10-20) of issues. MRI was not with contrast so likely I can get what I need from CT w contrast (checking on that order now)…
I decided yesterday I have to stand during the day. There is no position that is comfortable and I need my other muscles to engage… Was on bedrest for 10 weeks with twins and the atrophy (at my young age) was significant…
Assuming you chose your doctors based on their ability to address C1? Do you know what their plan is? And how long have you been in their queue for surgery? Did anyone express concern for the compression (stroke)?
TIA (no pun intended!)

Leah

[GCD]

@Leah I too have been searching for a lot of this information provided on this forum for about 2 years now. Mostly reading Reddit posts and scientific papers, until one Reddit member said to look on this forum.

Congrats on the twins, I have a 10 month old and a 5 year old myself. I saw the toll it took to have 1 child at a time on my wife, so I can’t imagine having 2 and dealing with ES/VES symptoms.

Really, I based my choice on the fact that everyone on Reddit recommended Dr. Patsalides as the expert on transverse sinus stenosis. Last year I found the my right transverse sinus was barely visible on an MRI, something that had been missed by radiologists on multiple MRIs I had taken over the course of 10+ years.

It took 3 (Nov 2022) months to wait for an online appointment with him to discuss my scans and then another 3 (Feb 2023) to do testing (Venogram/Angiogram and balloon occlusion). During that time I eventually kept going back to my scans and noticed the IJV stenosis on the both sides, but more prevalent on the left, which I knew was the only functional side to begin with. I had already started with Dr. Patsalides and so I proceeded to see what he thought after testing. Dr. Patsalides does not treat IJV stenosis, so he recommended me to his associate Dr. Larry Lo, fellow neurosurgeon who works in the same office.

At this point I had read various papers about IJV stenosis, some recommended C1 shaving others recommended stents. Dr. Lo has experience with all of the above and said that my IJV stenosis was extensive and that in his experience he has a better success rate when shaving the C1. Stent is a last resort if the vein doesn’t open many months later post surgery. Like I have mentioned in the past, it is probably due to the amount C1 is contributing to the stenois vs the styloid.

Dr. Lo is a neurosurgeon and does the C1 shaving portion of the surgery, Dr. Costaninto is a specialized ENT who performs the styloidectomy to the base of the skull. Dr. Costaninto will do the initial incision behind my ear and down towards my throat. He will also be detaching some minor muscles (he assured me I will not miss, fingers crossed) that connect to the hyoid bone to make access to the styloid and C1. I can’t remeber the exact terminology, but he will score the stenosed part of IJV to release it from its crushed form and it should balloon up immediately during surgery.

None of these doctors expressed any real concern about getting this done asap in fear of a stroke or a major blockage. The reason is that you can live without your IJVs, many throat cancer patient have to have them removed. Your body will try to use collateral veins to compensate. In many cases they compensate well and the patient never experiences any major issues and in other cases they can’t compensate enough and experience idiopathic intracranial hypertension (IIH). That’s why Dr. Patsalides tests for with this balloon occlusion testing.

The CT with contrast will reveal a lot for the next steps forward. You should also look at the transverse sinus in that scan as that is another place for a stenosis and will have the same effect as IJV stenosis. It’s common in females with hyper elasticity in their muscles with symptoms of IIH and especially if you can hear your blood pumping in your ears (pulsatile tinnitus).

I have not had surgery yet (May 16) and there are no members that I have found on this forum that have results from the 2 surgeons I am using. While I have complete faith in the direction I am going, I can’t recommend either until after surgery. However you could get the ball rolling and start scheduling the telemed appointments. Dr. Lo took about 1 month to get scheduled with for review of imaging and another 2 months for surgery after that, but that is probably because I was already a patient of the practice.

Dr. Hepworth and Dr. Hackman both have verifiable good results by members on this forum, but neither do the C1 shave as that requires a neurosurgeon. So again, I would look at your imaging to see if clearly shows what is causing the stenosis, styloid or C1 and base which surgeon to proceed with after that. Also insurance can be an issue, so make sure you are covered when setting up your appointments with these doctors.