New and looking for answers

[avarj]

Hey all,

As the title suggests, I am new here but I have a very strong suspicion I have ES.

About 4 years ago, I started having some wild symptoms that no one could really explain. Heart palpitations, tinnitus in left ear and pulsatile tinnitus in my right ear, headaches, neck pain, lump in my throat, gut issues, excessive sweating, shortness of breath, chest pain and tightness all over the left side of my body. I occasionally will almost pass out with a pretty intense tightness in my chest.

I was cleared by the ER and went on to see 3 cardiologists, 2 gastroenterologists, 2 allergy specialists, a pulmonologist, a sleep specialist and an ENT. Everyone said I had anxiety and I was basically a hypochondriac. I did have a disc problem in my neck, so they all thought that was the culprit to everything.

I spent years doing cervical steroid injections, PT and taking SSRIs and antidepressants. Nothing helps and after a disc replacement surgery, I was finally referred over to my current ENT for issues with tightness in my throat and a very sharp pain in the back of my mouth.

He ordered a CT and eventually referred me over to an ENT head and neck surgeon at Barrow Neurologic Institute, so hopefully they can help.

In the meantime, he mentioned ES but was not confident enough to look at my CT and say whether I had it or not. He said it was unlikely, but after showing him a 3D reconstruction of the CT, he just told me to talk to Barrow.

Here are my scans:

I want to get a second pair of eyes because I can clearly see the calcified ligaments he was talking about and it looks like my right IJV is being compressed but it is hard to tell. It also looks like the calcified ligament is compressing my left IJV a little bit.

Any insights would be super helpful!

[TML]

Holy cow @avarj you have some of the longest styloids I’ve seen.

I can help assess for compression. Can you go to the axial view of your original CT imaging and go to C1? It’s the vertebrae with wings and a white circle in the middle. Attached is my own imaging to help you locate it.

Regardless of whether IJV compression is present or not, you need those bade boys cut out of ya. There’s no world in which they aren’t irritating nerves and compressing structures with certain head movements, or causing malfunction of the hyoid while swallowing.

[avarj]

Thank you! I tried explaining that to my ENT but he just pointed back to the radiologist report that said I was the picture of health.

So frustrating.

Here is what I think you are asking for. They are inverted, so the left side actually the right and vice-versa:

I think I can see the compression on the left, but the right almost completely looks like it cuts it off.

[TML]

@avarj see attached annotated imaging.

Both your IJVs are compressed. On your right side, your styloid is involved in the compression. On your left side, it’s just C1 causing the compression. However, there could be times when your left IJV does slip between your left styloid and C1. It’s just not being compressed by the styloid in this specific moment in time.

You definitely need the styloids removed and preferably above the level of C1 to assure the IJVs are no longer compressed by styloids.

[avarj]

That is wild.

All of my symptoms are on my left side. I will definitely bring this up when I get into Barrow.

Thank you!

[Morechoiriel]

Wow, I am new to ES but even I can tell those seem very long. The run around to all kinds of different specialists is the most frustrating thing, and it leaves you feeling like a crazy person. I had a lot of the same symptoms as you and had the same thing happen (and its still happening).

[Jules]

Wow, goodness they are huge!! I said on @OMM9420’s post that his were some of the longest we’ve seen & yours are up there as well! Not that it’s a competition! I despair that any radiologist can look at those & think it’s fine It looks like you have a mighty long styloid on the left & a section of calcified stylo-hyoid ligament on the right.

Given @TML ‘s very helpful view about your IJV compression, it might be an idea to see if you can get a referral to Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772 as he is very experienced with vascular ES & does C1 shaves if this is a factor in compression.

[avarj]

I reached out to Dr. Nakaji’s practice for a consultation, so hopefully he can help

I agree. When I showed this to my ENT, he was like it all looks normal to him and was using the fact that, bilaterally, they were very similar in size and length. Glad he was humble enough to admit he was not 100% sure and gave me a referral, though. He also admitted that they teach you about it in med school, but it’s well understood that you most likely will never see it. This right here, probably explains a lot.

Even in the ENT space, this seems to be a very under-researched and misunderstood topic. Also, my faith in radiologists has plummeted from this experience. They seem to only look and focus on a very specific concern that is noted by the ordering physician. They seem to miss a lot of things that an untrained eye can see, which sucks. I only have experience with US healthcare, but these imaging companies have really dropped the ball for the sake of profit.

[avarj]

Wanted to give a heads up to anyone looking to reach out to Dr. Nakaji. His practice requires a specific CTV before they will decide to help you.

The exact specs are:

The single best initial imaging study is a CT venogram (CTV) of the head and neck from the top of the head to the base of the neck, including the collar bones (clavicles). High resolution 1mm contiguous slices.

He seems to have a high influx of requests, so try to have this completed before reaching out for a consultation.

They do seem very knowledgeable about what to look for, so I think this is actually a great sign.

[Isaiah_40_31]

Honestly, @avarj, you would save time & money by cancelling your appt. at Barrow & just focus on getting an appt. w/ Dr. Nakaji. He used to work at Barrow Institute & left to open his own private practice earlier this year.

[Jules]

Thanks for that info , others have mentioned that he would like to see that imaging first, but it has caused some confusion over whether he needs a CTV as in a CT with contrast showing the venous phase, or CT venography where pressures are measured ?hemodynamic pressure measurements? which is more invasive…

I’m guessing the straightforward CT with contrast…