I Was Just Down at UCLA

Kool dude,

I have been out of commission for several days barely functional. The vestibular physical therapy I had Wednesday induced vertigo then triggered massive headache and then woke up with throbbing skull pain the next day, now shooting nerve pain in back of skull into ear/temple. I suspect my neck muscles were aggravated and went into lock down causing more pain and nerves to go haywire. ENT thinks it triggered vestibular migraine and he does agree I need evaluation by a neurologist ie: neck and TOS. Like my PCP, the specialized imaging I am requesting is out of his wheel house. He did try to accelerate the in-house neurosurgeon appt w/ EDS friendly doc however I missed their call Friday and playing telephone tag.
I was shockingly able to get a video consult later this week with head neurosurgeon at UCLA. He has agreed to review my case and refer me to appropriate provider. I regret not starting in that department in the first place. This doc does primarily Chiari and other head/neck tumor surgery but has good diagnostic skills and was able to refer me previously to the right neurosurgeon and/or diagnostic testing after a few years of going doc to doc. It is so frustrating I can’t get the proper imaging…its hard for me to sit upright at this point. I did order the disk and will get that uploaded as soon as I am able.

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@Snapple2020 I think you should stay away from vestibular physical therapy if it is the one where they put you on table and move/twist your head and neck. I think you are on the right path. I hope whatever test they do includes dynamic blood flow test on Subclavian and Vertebral arteries something makes me very suspicious of intermittent blood flow disturbances.

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Kool,
Yes, I cancelled future pt given the reaction…and that I can hardly function. The only reason I am on computer is I promised to do a funeral brochure for my aunts funeral and Im not sure how I will do this am. The longer I sit at computer, the more my head hurts. Luckily my daughter knows photoshop pretty well and I think I will hand this job over to her.
Yes, they did move my neck around and had these goggles on that measure nystagmus in eyes which I did have. I communicated to the Vestibular PT person I had cervical neck instability and EDS but I honestly think she did not grasp the severity of it. She let my head drop off back of table unsupported and I had to hurry and grab my head to stop the neck pain it caused. Medical professionals just don’t listen or think outside their box. They often think when you have such good range of motion, you are just fine and don’t use the caution they should. I almost puked a few times and it definitely induced vertigo which I guess can happen in attempt to move the crystals in the ear. It was somewhat torturous. This one is going on the back burner for awhile.
I have asked 3 docs now for the specific imaging and these arteries (even the vascular doc—who still has not posted his summary visit notes?). He did capitulate to changing RX for TOS PT to OT to accommodate that therapists credentials. I am so glad you have identified some of the specific imaging needed. Unfortunately, I think it ordered more in the lane of vascular / neurologist speciality. I am laser focused on getting this testing.

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Snapple,

I’m very sorry to read about your current situation. What you’re going through sounds a lot like what our Canadian members & many of our US members have experienced w/ doctors who are more like machines than caring human beings. As you said, if it’s outside their wheelhouse (& even sometimes if it’s in it), they don’t pay attention to the details or do enough investigation to find things that are more obscure that could be the source of the problem(s) a patient has & send them packing. Anyone w/ the number of symptoms & past diagnoses that you have should receive extra care & time from any doctor seen.

It’s a travesty that getting the scans you need to help weed out what’s going on has been so difficult. I guess I don’t understand why some tests/scans can only be ordered by specific specialists & not by general docs as having scan results would help a PCP refer a patient to the correct specialist rather than the patient needing to “shop around”.

Sending you a gentle hug :hugs: & hoping & praying your skull pain passes quickly. Have you tried ice or heat?

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Thanks Isaiah,
Unfortunately, this particular round started with my EDS hand surgeon referring me TOS vascular surgeon at UCLA. The name was relayed to me by his receptionist and it is unclear how the name was acquired. Because I have so much trust in him, I proceeded assuming it was a good referral. For all I know, his assistant pulled the name off the internet…I will be having a discussion with him about this.

TOS Surgeon didn’t appear to even know my hand surgeon by name and when I asked him about what he knew about EDS, he just said “he knew about it” but I didn’t get a confident or very clarifying answer. As you know, the guy was dismissive and then just gave me an RX for PT and sent me packing! I did feel a formal complaint about how I was treated.
I think the ENT now understands I likely have other compounding issues and agrees I need to see a neurosurgeon/neurologist. Because he doesn’t know much about TOS, and doesn’t work with the specialized scans for it, he doesn’t want to touch it with a 10’ pole.

I did contact EDS support group and received a spreadsheet of EDS “friendly” providers in the state. I did get an immediate referral to someone on the list from PCP. AT least he does what I ask in that regard. ENT is in-house at Swedish where Neurosurgeon is and has sent over a more urgent referral internally. Im the one driving the ship it seems as none of them seem capable of taking the bull by the horns.
I have been pretty unsatisfied with my PCP for sometime and don’t like the hospital medical group he is in. I always seek referrals outside that system on my own as his past referrals were not to my liking. He sent me my labs a few weeks ago saying they were ok when in fact one was way out of range which I brought to his attention. I learned along time ago, to request copies of my labs due to these kind of errors. Ive been trying to find a new PCP but with post-COVID world, so many have closed practices now. Being on medicare now has also complicated it. I think I need to look for a female PCP for the next provider.
I think general docs don’t always understand some of the more advanced testing/scans and complex conditions, they don’t even know how to interpret the results. My PCP also is board certified in internal medicine so you would think he had a better grasp on this.I think he is burnt out to be honest and doesn’t have a grasp on the nuances and needs of EDS patients.

Like many of us who finally get the Eagles diagnosis, it took a long and winding road to get there. I’ll get there…eventually. When I can actually sit upright without being in pain. I have tried both heat and ice. As long as I am laying down and my head/neck supported properly I am ok.

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Such a long, tortuous journey for you. I hope the next docs you see dig in their heels & commit to help you find answers!

Finally Kool Dude…took my kids a couple hours. They say the website is very slow. Not sure you have the same experience. I guess with over 1000 images…

https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.20220619203414365.20535514327969100332

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@Snapple2020 Thanks, I will need to go through these images a bit deeply later this evening but by briefly skimming through them, I found the right vertebral artery (VA) to have somewhat abnormal course as it enters the skull and join the left VA to form the basilar artery (BA). the right VA appears to be very close (almost touching distance) to the skull base bone where the C1 joins the skull. I wonder when you rotate your head/neck or hyper-extend it to the right, that the right VA is getting compressed by this bone. This can’t be answered with static CT like this one and we can only speculate at this point but one of the reasons why it is good idea to do a dynamic Angiogram to see if it is intermittently being compressed. This definitely calls for further investigation. I am not a radiologist or doctor but to my untrained eyes, It definitely looks suspicious to me.

I could not find any issues with the right Subclavian artery which appears to be normal in size and no dissection/compression/irregularity could be found.

Here is coronal view of right VA (red arrow) and left VA (blue arrow) and the bone in question (yellow arrow). With EDS, I am afraid the right VA is vulnerable to compression by nearby bone with hyperextension/neck movements (this hypothesis need to be tested).


Just for comparison here is my right VA (red arrow) and left VA (blue arrow) and the bone in question (yellow arrow). You can see there is fair amount of distance between the right VA and the bone.

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Snapple, I hope that you feel better soon, such a long, drawn out journey for you. Sending you & hug & praying you’ll get the right scans & see the right doctors :hugs: :pray:

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Thank you Jules!
Perseverance is my middle name. :pleading_face:

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Thanks Kooldude for your input. I look forward to any further details later when you have time to review more in depth. Keep in mind this imaging is one year old and my arm/bracial plexus symptoms have significantly worsened since then.

I can definitely see the difference when compared to yours. In 8/2018 MRI, there was a “Note is made of a dominant left vertebral artery.”

A few weeks ago, I hyper-extended to the right and I almost blacked out. When I turned over in bed to the left and moved to get out of bed, similar movement…not quite hyper-extending my neck to right, I got pretty dizzy. Im been trying to be more aware of what movements trigger the dizziness. Movement to the right definately feels restricted compared to left.

When I was at the Vestibular PT this past week, while laying down flat, she allowed the head cradle to drop down suddenly …(kinda like a trap door) and it hurt like hell, my head dropped more to the right and back. I can’t hold my head up (reason I dont do sit ups) without support in that position…I had to hurry and grab my head to support it. Im not sure why she would do such a maneuver when someone has neck instability. Duh???

@Snapple2020 I have looked into the CT much more deeply this time but I found something that is significant in terms of your right sided symptoms, mainly the presyncope/dizziness but it needs to be verified with dynamic angiogram that you are about to go under. Don’t know if these have been found when the radiologist looked into this CT Angio but I found 4 pieces of what appears to be calcifications along the Carotid Artery (primarily External Carotid Artery).I do not know whether these fragments are the remnants of the removed Styloid/stylohyoid ligaments (not sure what was removed) or whether they are naturally formed calcifications. Regardless, they are of great significance if they prove to be compressing/irritating either the ECA or the ICA intermittently when you move your head/neck or hyper-extend it or in a car driving on bumpy road. According to the literature, irritation or compression of the ECA can also cause weaknesses on the Arms along with dizziness and presyncope (see the documents at the bottom). This is all relevant in your case but needs to be established with Dynamic Angiogram. I also found that the ECA signal to be bit weaker in around the 3rd piece of the calcified fragment which lies in between the branches of the ICA & ECA (not sure how significance of it is). I am not sure if this is the only culprit as your EDS also put you at risk of other intermittent compression of other vessels but felt the need to report it anyway.

First piece of the four calcifications (cyan arrow) sits on top of jugular vein (blue arrow). It is important to note that It resembles the remaining styloid but this is not the remnant of the removed styloid. This is the 1st piece of 4 calcifications.

This is the 2nd piece of the calcification (cyan arrow) and is resting against the External Carotid Artery (ECA) (red arrow) potentially irritating it.

This is the 3rd piece of the calcification (cyan arrow) and lies in between the External Carotid Artery (ECA) (red arrow) and Internal Carotid Artery (ICA) (yellow arrow). It can potentially mess with either of them. Also important to note that ECA signal attenuates here

This is the 4th piece of the calcification (cyan arrow) and is very close to the External Carotid Artery (ECA) (red arrow).

3D images of the fragments of calcifications (blue arrow) and the tiny remnant of the styloid process (green arrow)



This document is a good read about different variants of Eagle Syndrome. This is where I got the screenshot above.

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

It was also posted here in the research area by Andrea who I believe co-wrote this study.

WESTBROOK et al. (2020) - Eagle’s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction – Doctor info and research article

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The gaps in IJVs - are they post-processing result or something already discussed?..

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@vdm There are no gaps in IJVs. This is induced by the rendering and the density I chose in order show the fragments clearly.

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Kool Dude,
Thanks again for your input! You have given me alot of food for thought. I have long wondered and others (as well) whom had their styloids and calcified ligaments removed by a CA doctor, whether ALL the calcifications were removed during ES surgery? One patient, in particular was found to have considerable styloid left untouched and told it was bone regrowth (in less than a year?) Many of us suspect not alot of focus taken on the calcification being removed during surgery or consideration of possible IJV compression. Because of this, I asked TMJ and oral surgeon last year to take a look at CBCT and see if styloids taken at skull base on both sides. It appeared mine were removed but not alot of focus on any possible small pieces of calcifications at the time. Docs ES operative reports lack the detail I would like to see with regards to removal of calcifications of the ligaments. Not much more than about 3.5 cm removed on right side. Ive got to wonder now about the possibility this doc only took out calcified pieces that were easily accessible and visible. I certainly have most all the imaging done which is considerable since 2015 that could be reviewed. I had both sides done externally in 2020.

Also, have wondered if our bodies have tendency to lay down calcifications in general, once ES surgery done, will they return?

It happens I see Oral Facial doc at academic setting tomorrow that has been on the books for months, I had planned on taking CBCT done the past years ie: tooth extraction and implant process. I will take all my scans and if appropriate speak to him about this. Never have met him before but is well regarded in the local EDS community. I have not yet got the orders from neurosurgeon for the dynamic imaging. Since the appt was Thursday, I figured Id give him a couple days as i think he wanted a consult report to go with it. Ill start stepping up the request so I can get the scans this week.

I certainly do have many of the possible symptoms - intense occipital headaches, jaw, etc It is why I have resorted to botox injections in jaw, occipital and temples. Its been a little hard to tease out what is occipital/neck issues vs TMJ vs EDS related arm/hand ligament repairs/scar tissue the past decade.

@Snapple2020 I can only speculate since I do not have evidence but I think these are remnants of either the removed styloid or calcified stylohyoid ligament. It is highly unlikely that your body will produce 4 pieces of calcifications in less than a year. If that was true, you should have them grown by now to double of their original sizes at that rate since the CT itself is one year old but I think that is highly unlikely. Either Samji left it because it was too risky given the close proximity to Carotid artery branches or he did not see them at all. Either way, they need to be addressed. Don’t even know if they are irritating nerves as well since you have so much pain on that side. I am also looking forward to seeing the result of the dynamic blood-flow test since other intermittent vessel compressions can happen with EDS.

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I thought that the ligaments were removed as well but may be wrong on that!

LOL. Kool dude. Yeah didn’t think regrowth could happen that quickly. The patient I know of, had considerable styloid left in and had to seek another surgery for revision. Didn’t leave me with a warm & fuzzy feeling about what was done in my neck.
I honestly dont think ES Surgeon spends alot of time on these calcifications. Ive always wondered if these surgeons should be reviewing the CT scans at the time of surgery to make sure all the calcifications are removed rather than going in blind and just seeing what they find after they open you up. You would think if something was too risky to remove, there would be made mention of in the operative report?

I think every ES surgeon takes a different approach to removal of the calcified stylohyoid ligament. Often I think it can be segmented and not continuous. I could have sworn I was told mine was assumed to be continuous at least when reviewing the scan prior to surgery. In the case of some patients, they get the value of getting a pix of what was removed. Samji does not give you photo…and wont if you request one.

This research paper by co-author Andrea is EXCELLENT!

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