@Katflorida - Please keep us posted regarding Dr. Townsend. We’d love to add her name to our Doctors List if she has good ES experience & good surgery outcomes. I will pray & trust God to lead you to the best possible surgeon for round 2. 
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Since I am new to this I don’t understand half the terms. What type of doctor would check if my daughter has Vascular ES and what does ES stand for lol?
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Since I am new to this I don’t understand half the terms. What is a C1 shave?
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@VeronicaC - ES stands for Eagle Syndrome. We use the term vES to stand for vascular Eagle Syndrome which can be either styloid elongation with internal jugular vein (IJV) compression or internal carotid artery (ICA) compression or a combination of both IJV & ICA compression (which is very rare).
I don’t recall hearing the term Eagle Ear Syndrome before so that must be a term the doctor came up with as it’s not the typical term for Eagle Syndrome even in research papers about it.
An ENT (ear nose & throat doctor) who is experienced with ES would be the person for your daughter to see. She needs a CTA/CTV scan i.e. a CT scan that looks at the arteries in her neck (CTA) & a CT that looks at the veins in her neck (CTV). These can be done one right after the other. The difference is the timing when the contrast is injected into her arm. It is time to enter the blood stream during the arterial (for the CTA) & veinous (for the CTV) phases of the heartbeat. You can request that the imaging be done with her head in different positions (looking left/right & up/down) because if there is compression, it sometimes is more obvious if the patient’s head isn’t in neutral (facing the ceiling) for the whole scan.
It may take some effort to find a doctor who will refer your daughter for the imaging I’ve suggested. If you can’t find anyone locally to do that, you can simply request a CT scan with contrast which will provide enough information for your daughter to be able to have a consult with one or two of the doctors we know of who does surgery for IJV compression.
In cases where there is IJV compression, the compression point is often between the styloid process & the transverse process of the C1 vertebra (the top vertebra in the neck). The tips of the C1 vertebra are called the transverse processes. They look like a “knob” or enlarged area on each end of C1. Often just removing the styloid isn’t enough to give the IJV room to open up more so some of the transverse process may need to be shaved off the C1 vertebra to give the IJV more space to open. This isn’t always necessary but it’s something you should be aware could be.
Here is a drawing of the cervical spine:
Below is a drawing of a skull showing where the styloid process is. The styloid in the picture is normal length. The picture is from the Wikipedia page about the styloid process:
The internal jugular vein exits the skull close to where the styloid process is attached. The vagus nerve which sits close beside the internal jugular vein can also be impacted when the IJV is compressed. When the vagus nerve is unhappy, it can cause all sorts of problems in the body including gastrointestinal issues, heart rate & blood pressure problems, body temperature dysregulation, & vocal loss to name a few.
I hope this information is helpful.
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Thank you so much. That was a lot of very useful information. My daughter did have a ct with contrast but I don’t know if they did all that you explained. She does have a consult with a surgeon. I assume they will order another ct if all that was not done , or she will ask them to go so. Not sure why the ENT called it eagle ear syndrome , maybe because it sits near the ear and my daughter has a lot of ear pain. Could have just been a reference and she mistook it as the actual name . Thank you again
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@VeronicaC - Since your daughter already has a CT with contrast done, I think it would be wise for her not to waste time with doctors who “might know” something about ES & go straight to the doctors who will be more likely to help her. With the symptoms she has, I think any of the following doctors would be most helpful for her -
Dr. Liu - 200 S. Orange Ave, Ste. 265, Livingston NJ, ph # - 973-577-2888 Dr. James K. Liu | Top Neurosurgeon in Livingston, NJ OR https://skullbasemd.com Does telehealth consults.
Dr. Costantino - Institute for Specialized Surgery - info@iss.org - Does telehealth consults.
Dr. Cognetti - Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 Works with Dr Heller now to do C1 shaves
David M Cognetti MD | Jefferson Health Does telehealth consults.
Dr. Nakaji - •Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772 Does NOT do initial telehealth consults.
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I thought this was a good post. Is it appropriate for me to repost here? If not, please delete. I’m still new to all of this. Thank you.
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You’re welcome to repost older posts from this forum in your posts as there is “old” information that is very relevant & helpful for our members to read (or re-read) so no problem!
None of the doctors we know of who do IJV decompressions have a vascular surgeon present when they operate. Several have a neurosurgeon who assists them, & almost all do nerve monitoring during surgery so they have a nerve monitoring specialist who sits at a computer & calls out nerve numbers that “light up” during surgery to let the surgeon know to be careful or re-route what (s)he is doing to protect a given nerve.
Most of the doctors who do IJV decompression have their patients get an angio/venogram prior to surgery so there is more detailed information about the specific location(s) of vascular compression. That is done by a vascular surgeon & helps the ES surgeons plan what needs to be done during surgery before they’re actually in the process of doing the surgery.
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Thank you @Isaiah_40_31
I’m truly grateful for this forum, you and the others. Ive learned so much in 24 hours after losing hope. I’m scared but hopeful. I reached out to Dr. Aghayev who replied requesting my imaging. Done. Tomorrow I’ll send my imaging to Dr. Liu. He’s available late October/early November but I will try to get on a cancelation list to get a sooner telehealth. I read all of your and everyone’s post and they are a deep blessing from the Heavenly Father and my Lord and Savior. Im 90 percent bedridden from dizziness and declining. Thank you again. I’ll eventually look for posts on your surgery experience when I have time. Right now im racing against the clock as my health declines. I’m impressed by your and everyone’s courage and strength. Thank you to all for the responsiveness. Good night.
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I hope that you hear from Dr Lui soon, if he’s nearest to you, will pray for that for you.
I felt pretty rough before my first surgery with bilateral IJV compression, & the wait seemed long enough, but I wasn’t bedridden, so thinking of you & sending you a virtual hug 
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