Buzz. My case history, findings and radiology images

[Buzz]

@Leah Thank you!

For anyone who is interested, here is the pdf document that I plan to print and present to my ENT at my appointment:
Buzz’s ENT appointment presentation.pdf (5.2 MB)

Feel free to download it and check it out. I welcome any feedback or suggestions to improve it. I want it to be as good as possible for the appointment, especially since it’s so hard for me talk.

It includes part of my 2014 CT scan report, which I just got a copy of. It turns out that my left IJV compression was detected by the radiologist back then, and my neurologist didn’t follow up on it.

@Leah

So when you carved away and isolated the JV in the styloid, I’m assuming you used the scalpel

That’s correct. It’s fiddly, but it works after enough trial and error.

[Leah]

@Buzz that they missed it and missed years of chances to help you … I’m so sorry …
And that it’s hard to talk …(((

[Isaiah_40_31]

@Buzz - That’s a remarkable presentation you’ve made & certainly a solid case for your diagnosis of VES. Any doctor who would deny that diagnosis would have to be totally ignorant of ES.

Since you made your slides from 9 & 11 year old CT scans, I feel confident saying that your styloids are most likely longer & possibly thicker now & vascular compression possibly even worse, thus the increase & worsening of symptoms. It was interesting seeing the comparison of your styloid angles w/ the left being less angled than the right. The overhead view made that really visible. I had a similar situation but in reverse - right straighter, left more angled. My left side was far more symptomatic than my right so styloid position really does make a difference.

[KoolDude]

@Buzz

Here is a table that I plan to print out for my ENT appointment. It includes the averages in the third column (some are specific to males):

Great work!. You find a way to quantify what is average IJV size versus your size at that particular area. I take it that the averages are diameter measurements.

[Violin]

RE which side to do first…

“…if the styloid-induced compression on nerves is causing a lot of pain, then it makes sense to take care of that first.”

One would think so, agreed. I thought so. Alison at Dr Hepworth’s thought so.

BUT

Dr Hepworth explained that for me, opening the opposite side, the contra lateral side, is optimal. Takes the most pressure off the irritated, painful nerves.

Probably your surgeon will decide.

[Buzz]

Thank you so much for your comments, guys! I will feel more confident now going into my ENT appointment.

@Violin

Dr Hepworth explained that for me, opening the opposite side, the contra lateral side, is optimal. Takes the most pressure off the irritated, painful nerves.

@Violin I’m very interested in this, and I would love to learn more about it. Do you know the details of how removing the right styloid first might help reduce nerve compressions caused by the left styloid? Any knowledge that you could share about that topic would be greatly appreciated. Thank you!

For the surgery, I’m happy to travel anywhere in the world to get the best treatment.

Apart from Dr Costantino, is there any other surgeons who do styloidectomy + C1 resection that you guys would recommend?

I understand that Mr Axon does C1 resection as well? Does he do himself, or is it performed by another surgeon?

@KoolDude

I take it that the averages are diameter measurements.

@KoolDude Yes, the IJV averages are for the diameter and cross-sectional measurements taken at the same C1 vertebra level as my measurements. I’ve included the area measurements in the radiology images in the PDF that I uploaded.

@Isaiah_40_31 @Leah Thank you so much!

[KoolDude]

@Buzz

@KoolDude The 2014 and 2010 scans contain contrast views of my IJVs and transverse sinuses.

Hi Buzz, I was able to quickly look at your 2020 MRI and 2014 CT. Since we already know that you have IJVS caused by C1 & Styloid compression, I tried to look beyond those and found a few things that need to be confirmed with additional investigation. Both the significance of them and the clinical relevance need to be established with additional specialized imaging.

Left Internal Carotid Artery (ICA) and Styloid Contact : I have found that your elongated Styloid is rubbing against your ICA and could potentially be compressing/irritating it when you look down. Typically, Carotid compression/irritation mainly manifests as (Syncope, presyncope, vision changes, dimmed vision, slurred speech, difficulty speaking, lower cranial nerve dysfunction. Horner’s syndrome, ptosis (drooping eyelid), constriction of the pupil, loss of sweating over the ipsilateral face, upper/lower extremity paresthesia. Weakness or paralysis of face, arm or leg, dizziness, unsteadiness, or falls.). So this needs to be investigated with dynamic angiogram specially in flexion position (bending the neck down) to see if it is compressing it. I am not a doctor, but based on literature, it could potentially cause stroke as well so this needs an urgent addressing.

Here are Axial and Coronal images of Styloid (Cyan arrow) and ICA (Red Arrow). Axial image shows the contact well.

Here are the 3D images of the elongated left Styloid (Cyan arrow) and left ICA (Red arrow). You can see the Styloid resting against ICA. Imagine what it could do if you flex your neck.

So the left Styloid is not only messing with the left IJV & ICA but I suspect it is also messing with Glossopharyngeal Nerve, Vagus Nerve and since it is rubbing the Carotid, it is irritating the nerve fibers on the Carotid body such as baroreceptor as I think some of your symptoms match them. I listed the symptoms from them below and the source Study link is provided as well. It is good study to read if you have not read it before.

Here is an internet image that shows the close proximity of GPN, Vagus, Carotid and IJV. Think about the terrain that the elongated Styloid is travelling

**

Carotid Sinus Body irritation symptoms. I highlighted the ones I thought you might be interested.

Glossopharyngeal Nerve, Vagus nerve and ICA irritation symptoms. I highlighted the ones I thought you might be interested.

Source Study Link : https://emergeortho.com/wp-content/uploads/2018/04/1-s2.0-S2468781220301399-main-2.pdf

Suspicious CSF leaks along the Cervical and Thoracic Spine : I also find what suspiciously appears as CSF leaks on your cervical spine C1-C2 area and various areas of thoracic spine (from T5-T11). I am not sure the significance of this because a lot of us, IIH suffers, leak CSF in various places along the Dura (both in the brain and spine). This is due to the raised intercranial pressure so any weak area of the dura gives in and leaks CSF spontaneously. The good thing is the majority of IIH leakers do not suffer from the debilitating symptoms of CSF leaks since our CSF is already high and sometimes it works to our advantage since it lowers the pressure a bit. Anyways, regular MRI is not sensitive enough to detect them so this finding needs to be confirmed with special MRI Myelogram if you deem significant enough to investigate it further otherwise be aware of them. CSF leaks typically resolve after taking care of IJV compression and lowering the IIH.

MRI T2 2020 shows suspicious CSF Leak on the nerve exits called bilateral neural foramina (Cyan arrows) C1-C2 area. This needs to be confirmed with specialized MRI such as MRI Myelogram.

For a reference of what normal look like. No suspicious CSF leak on C3 - C4 is seen here. CSF appears to be contained where it should be

MRI T2 2020 shows suspicious CSF Leak on the nerve exits called bilateral neural foramina (Cyan arrows) on T4 - T5 area. There also suspicious multiple CSF leaks on nerve exits (Yellow Arrows). This needs to be confirmed with specialized MRI such as MRI Myelogram.

.

Even if CSF leaks are confirmed in your case, I would not worry about them if they are not causing any severe symptoms. I, myself, leak them on my nose, ears at times. So proceed with opening up the IJV and removing the Styloid. That usually resolves them. Here is a good study from Dr. Higgins in UK. that talks about it.

Source : https://www.tandfonline.com/doi/pdf/10.1080/21641846.2021.1956223

IIH Markers are seen on the MRI: I have also noticed the other tell tale signs of IIH. Optic Nerve Sheath dilation (ONS) and milder partial empty sella which both are considered a good marker for IIH.

MRI 2020 T2 Axial & Coronal show CSF filled Optic nerve sheath (Red arrows). CSF is white on MRI T2

MRI 2020 Sagittal shows partial empty sella another marker for IIH (Cyan arow). Note CSF is dark/black on T1 MRI.

[Jules]

We’ve had one or 2 members who’ve had surgery with Mr Axon & had C1 resection as well as styloidectomy, I think the last few people who’ve seen him have been refused surgery as it’s been on the NHS rather than paying privately, there seem to be more restrictions on who he can operate on now…but whether that would apply for someone paying privately I don’t know…

[KoolDude]

@Buzz

On the one hand, the IJV-compression-like symptoms are debilitating. But I believe that I could survive enduring an additional 6 months of brain fog, fatigue, terrible sleep, etc. On the other hand, the vagal-compression-like symptoms are unbearable. The suffocation sensation and pain episodes in my neck has become so severe I’m not sure that I could handle delaying it. I might be compelled to choose the side first that is most likely to reduce those two symptoms. I’ve got a lot more learning to do on the topic.

Based on the Carotid involvement alone, I now I agree with you 100% to remove the left Styloid as soon as possible.

[Buzz]

@KoolDude Wow, thank you! I’m blown away by your analysis and findings! Thank you so much for taking the time to look at my scans and share your insights.

I understand everything that you’ve explained, and it makes sense. Thank you for making it so easy to follow with sources and diagrams.

It’s incredible seeing so many of my symptoms on those lists.

I haven’t yet begun studying CSF leaks and IIH, so those findings were all new to me and very interesting.

I had noticed the close proximity of the styloid to the carotid artery, but hadn’t considered the effects of dynamic movement on it.

It will be interesting to see how the carotid and other structures are affected by looking down in the dynamic scans. I will post the results here as soon as I get them. I still have 2 months to wait for my first ENT appointment.

Would I be correct in assuming that the likely solution to all of these findings will be:

• Scans:
  • Dynamic venography.
  • Dynamic CT venography.
  • Doppler ultrasound.
• Surgery:
  • Styloidectomy
  • C1 resection.
  • Removing any soft-tissue compressions.
  • IJV monitoring.
  • Nerve monitoring
• Scans to see if the IJV compressions and CSF leaks have resolved.

Does that sound like a good game-plan to you, or are there additional steps that you think I should include?

[KoolDude]

@Buzz

Would I be correct in assuming that the likely solution to all of these findings will be:

• Scans:
  • Dynamic venography.
  • Dynamic CT venography.
  • Doppler ultrasound.
• Surgery:
  • Styloidectomy
  • C1 resection.
  • Removing any soft-tissue compressions.
  • IJV monitoring.
  • Nerve monitoring
• Scans to see if the IJV compressions and CSF leaks have resolved

I think that is a good plan. Ultimately, you need to remove the left Styloid to see what resolves. I particularly think the following triggers you listed below move the Styloid & the mandible downwards potentially irritating Carotid (Carotids are thick walled so it might not get completely compressed by slight downward movement and could be why you did not get a complete Syncope or full TIA symptoms yet) and surrounding nerves causing the intermittent symptoms you listed below. So we have clinical symptom correlation and clues from the Scans to start with. No Bone should be near the Carotid artery period. May I also suggest that you wear SOFT NECK COLLAR - NECK BRACE to keep the Styloid from downward movement each time you look down or move your mandible while eating or yawning (I speculate that downward movement of the mandible moves soft tissues and ligaments above the Styloid which could in turn press the Styloid downward). This is to prevent injury to the ICA while waiting for surgery. BTW, I used to wear it and it did help a lot.

@Buzz

Triggers

• Looking downwards, and to the left. Moving head laterally to the right.
• Opening jaw wide, yawning, laughing, talking, swallowing.

@Buzz

Intermittent

• Pain / burning / tingling sensations in my neck, throat, jaw, palate, sinuses, base of skull, left ear, shoulder, chest. Left side mainly. Lasts for hours. Unresponsive to analgesics.
• Headache, pulsatile cranial pressure sensation, brain fog.
• Shortness of breath, upper airway burning and irritation. Coughing.
• Tachycardia, palpitations.
• Faintness, unsteadiness, presyncope.
• Dry eyes.

I got a good picture from an academic paper in the internet depicting the nerves and Styloid better than the one I put in the analysis. Not accurate, but I drew (lime colored line) to show the imaginary path of your Styloid since the Styloid on the picture is away from the IJV.

Source : Europe PMC

[KoolDude]

@Buzz

Quality of life critically low. Limiting every aspect of life. Sleep is very bad. Mild exertion is unbearable. The only speaking I’ve done since February has been in doctors appointments, etc, and I suffer afterwards for many hours. I type and use sign language with my family. It’s miserable.

@Buzz Now that I see your symptoms and imaging clues, I really sympathize with you. You must be suffering from all 3 variants of Eagle Syndrome (Jugular Variant, Carotid Variant and Classic Variant). No wonder quality of life is critically low as you said it. Like you, I have kids and a loving wife and I thought I had it worse since I could not be as supportive as I used to be but looking at your case makes mine a cake walk. Don’t know how I would have coped with all these.

A Quick Reminder of Types of Eagle Syndromes (Vascular is combination of IJV & Carotid ones)

5.1. Classic form
The classic form of Eagle’s syndrome commonly presents as pain/
paresthesia in the neck, jaw/face, head, throat, ear, teeth, tongue, globus
sensation, eye twitching (Waters et al., 2019), hoarseness or change in
voice, and/or cranial nerve injury/irritation (Kawasaki et al., 2012).
Many providers believe this neuralgia is a type of entrapment syndrome
involving the cranial nerves, commonly after tonsillectomy (Shin et al.,
2009).

5.2. Vascular form
The vascular form of Eagle’s syndrome commonly presents as pain/
paresthesia in the neck, jaw/face, head (Eagle, 1948), shoulder ‘coat
hanger syndrome’ (Thoenissen et al., 2015), tinnitus, ear muting/fullness (Waters et al., 2019), facial droop/palsy (Galletta et al., 2019),
slurred speech or difficulty speaking, extremity tingling/numbness or
mono/hemiparesis, visual changes, amaurosis fugax, aneurysm, carotid
artery dissection, stroke (Ogura et al., 2015), TIA, syncope/presyncope,
dizziness (Todo et al., 2012), and pseudotumor cerebri (Ho et al., 2015).
Production of these symptoms can occur from injury or compression of
the periarterial nerve plexus, blood vessels or a combination (Eagle,
1949).

Source Study Link : https://emergeortho.com/wp-content/uploads/2018/04/1-s2.0-S2468781220301399-main-2.pdf

[Isaiah_40_31]

@KoolDude

Left Internal Carotid Artery (ICA) and Styloid Contact : I have found that your elongated Styloid is rubbing against your ICA and could potentially be compressing/irritating it when you look down. Typically, Carotid compression/irritation mainly manifests as (Syncope, presyncope, vision changes, dimmed vision, slurred speech, difficulty speaking, lower cranial nerve dysfunction. Horner’s syndrome, ptosis (drooping eyelid), constriction of the pupil, loss of sweating over the ipsilateral face, upper/lower extremity paresthesia. Weakness or paralysis of face, arm or leg, dizziness, unsteadiness, or falls.). So this needs to be investigated with dynamic angiogram specially in flexion position (bending the neck down) to see if it is compressing it. I am not a doctor, but based on literature, it could potentially cause stroke as well so this needs an urgent addressing.

@KoolDude - Do you have a source or sources for the symptoms you listed in this paragraph? If so, would you please share it/them.

[KoolDude]

@Isaiah_40_31

@KoolDude - Do you have a source or sources for the symptoms you listed in this paragraph? If so, would you please share it/them.

Hi @Isaiah_40_31 yes indeed. I have also referred it in the posting. Look for the Internal Carotid Artery (ICA). It is in this page below. The last section. It can also be found the link listed below.

Source Study Link : https://emergeortho.com/wp-content/uploads/2018/04/1-s2.0-S2468781220301399-main-2.pdf

[Isaiah_40_31]

Thank you @KoolDude. I read parts of the images you included but not thoroughly. Running on very little sleep for the past few days so am not as observant as I should be! Appreciate you MUCH!!

[Isaiah_40_31]

@Buzz - I’m replying for @Violin regarding crossover symptoms. By virtue of the design of the human body, the two halves are very interconnected by fascia, muscles, nerves, vascular tissues, & even skeletally. This can be seen in any image of the human body where those tissues are visible. Because of that interconnection, it is possible for “injury” on one side of the body to also cause pain/symptoms contralaterally.

Speaking from experience - After I had my right styloid removed & was pretty well healed, some symptoms returned; however, once my left styloid was removed, the symptoms on the right & left sides of my body all gradually faded away (well mostly).

This is a pretty basic explanation, but I hope it’s satisfactory.

[Leah]

Hey Buzz, did the blood thinners help? Crossing fingers and toes for you.

[Buzz]

@Jules

I think the last few people who’ve seen him have been refused surgery as it’s been on the NHS rather than paying privately, there seem to be more restrictions on who he can operate on now…but whether that would apply for someone paying privately I don’t know…

@Jules Thank you. Do you happen to know of any patients that have had surgery with Mr Axon privately? Or any that have travelled from overseas to see him?

I would be interested to learn if there is different restrictions for NHS patients vs private patients. Also if the waiting periods might be shorter as well.

Also, do you know if Mr Axon performs the C1 resection himself, or another surgeon performs it?

@KoolDude

SOFT NECK COLLAR - NECK BRACE to keep the Styloid from downward movement

@KoolDude Thank you for the suggestion. I have purchased a few different ones to try.

Limiting my downward and left-side head movement has reduced my intermittent symptoms, but it is hard to always remember to avoid.

And thank you for the additional information.

I’ve been feeling like I was on “death’s door” for years, so these findings make a lot of sense and could explain why my quality of life has been so falling so low.

I found this image and was amazed at how many structures are near the styloid:

@Isaiah_40_31

Because of that interconnection, it is possible for “injury” on one side of the body to also cause pain/symptoms contralaterally.

@Isaiah_40_31 @Violin Thank you. It’s a very interesting subject. I’m interested to see which side the ENTs recommend for my surgery.

@Leah

Hey Buzz, did the blood thinners help? Crossing fingers and toes for you.

@Leah Thank you for asking and for your support! It’s probably too soon to tell, but I feel like the antiplatelet medication might be helping my symptoms to some degree. But, I have also noticed an increase in the frequency of my neck pain episodes.

[Leah]

If you have energy, I’m interested in your neck pain episodes. If you’ve not done so already, and care to elaborate …I have neck issues from a car accident … so unfortunately very familiar with neck pain; would like to see if any of yours rings a bell with me and what I’ve found helpful.
And understand on plavix. I literally feel one step forward and two-five backwards some days ((.

[Isaiah_40_31]

@Buzz - I love the image you posted. It’s very concise & explains a lot that I only ever verbalized but never tried to visualize. Thank you!!