We got CTV imaging done for daughter #2 today. We are posting them here hoping for some feed back from those of you with experience. Anything jump out at you on these images?
The styloids donât look long at all, Iâm sorry that I canât label anything for you, but looking at the left side where youâd expect to see the styloid it looks pretty thick & unusual by the base of the skull, & then thereâs a small piece of calcification below this, so could potentially be causing some compression right at the skull base?
It looks like thereâs a very small amount of compression of the IJVs by the C1 process when you look from behind, although itâs not so obvious from the side views⌠But quite a tangle of blood vessels below the skull base so these could be collateral veins, & that could indicate IJV compressionâŚYouâve had that confirmed anyway, so Iâm surprised that it doesnât look that significant on these imagesâŚ
Your daughterâs neck looks very straight so itâs lost itâs lordotic curve, which can sometimes make ES symptoms worse; there are exercises which can sometimes restore the curve, but do I remember right that she has EDS or other issues? If so these might not be good⌠Her vertebrae look pretty off kilter from the rear view too?
Yes she does have EDS diagnosis but by a cardiologist, who also diagnosed her with hypovolemic POTS, so not sure what a specialist would sayâŚ. as far as symptoms she has severe daily headaches, noise intolerant, black outs when standing from sitting, daily fatigue, restless nights which can include times of falling asleep for a while then getting âblack outsâ in which she cannot move or get her breath until the âspellâ passes. When standing while working that posture creates worsening headaches. Would the hypovolemic POTS play into what she is experiencing?
Yes we noticed her very straight neck also. And we asked her if she was laying straight when the image was taken and yes she said she was as straight as could be. She is seeing an upper cervical chiropracter at least 2-3 times a month and he had done rotational x-ray images of her neck and noticed extra rotation at the C4-C5 area, if I remember the right location. Thanks for saying something about her neck as we wondered what others would say.
1 Like
@BuckeyePrincess - Iâve annotated your daughterâs images below but am somewhat uncertain about whatâs going on w/ her carotid arteries. Iâll comment below each picture.
The IJV doesât appear very compressed from the front side in this image however, her anterior facial vein looks like it has a kink in it which Iâve marked. Iâm not sure if thatâs relevant or not. The carotid arteries (ICA/ECA) are barely visible.
I donât know what the vein is on the lateral side of the IJV. Itâs the vein Iâve marked as looking compressed, but itâs not the carotid artery. The common carotid can barely be seen medial to the IJV.
In this image the area of compression on the right IJV is visible but not as much on the left side. Itâs curious to me that she has a higher density of collateral veins on the left than the right even though compression appears worse on the right. It could be because her cervical spine curves slightly to the left, that in head positions other than neutral, the IJV compression is worse on the left.
1 Like
Itâs hard to say whatâs causing what for your daughter, she has alot going on as @Isaiah_40_31 has pointed to on her imagingâŚand just to add to the mix the vagus nerve is alongside the IJV so if the IJV is compressed the vagus nerve could be too, & this can cause BP changes, heart arrythmias, breathing issues & possibly black outs perhaps (I donât know if vasovagal syncope can be caused by irritation of the nerve?). 
1 Like
@BuckeyePrincess - I updated the first & second images above. I had made some significant mistakes in labeling. Iâm so sorry!
Thank you so much for labeling veins and arteries and notating compression sites⌠so helpful!! What do you suppose for surgery? Exercises would help avoid surgery or no? Put off possible surgery for another six months? At this point we may be looking at getting an initial consult with Dr. Hepworthâs NP when our 1st daughter has her surgery on April 1. She could have an in office visit then, but we were hoping to know by then what the CTV is showing for sure. So many decisions that it is a challenge to know for sure what to request and what to wait for! Any thoughts or advice?
Oh and another question⌠is it typical to have the maxillary artery cross the face?
I edited the labels on your daughterâs imaging. Iâm so sorry I made some mistakes but they are corrected now. The vascular structure in question is her anterior facial vein.
I think your daughter may be looking at needing surgery sooner than later since thereâs a chance her blacking out type symptoms could be carotid related. Carotid symptoms are more critical than jugular because they can sometimes (rarely) result in a stroke. I could be wrong about the source of the symptoms she has, but theyâre very suspicious to me.
Iâm not sure about the anterior facial vein but that would be a good question for Alison or Sarah when you have your consult.
1 Like
I think that itâs likely to need surgery, and given the wait times for Dr Hepworth, I wouldnât want to put anything offâŚBut when she has a consult youâll get more of an idea
1 Like
February 24 is scheduled with Sarah Reynolds for the initial consult. Then we hope to know for sure what our daughter is dealing with!
3 Likes
Iâm so glad your other daughter now has a date for her initial consult. Donât leave the office or telehealth appt w/o making her next appointment!
Please let us know what you learn.
1 Like
Thank you for the reminder about making the next appointment!
I will keep you updated!
1 Like
Great news!
1 Like
Hello againâŚ. sorry it has taken a while to let you know how the visit with Sarah Reynolds went. To be honest, we felt âpunched in the stomachâ so that is probably the reason for the silence.
First of all Sarah said her transverse dural venous sinuses are squished too small. Since we know our daughter has known MALS, Nutcracker and May-Thurner she is recommending we get those fixed as that should help the dural venous sinuses to open up. She also said the jugulars look full and open on the CTV. But she noted mild cervical rotation and noticed the C1 pushes the JV against the styloid creating a compression.
Our daughter does feel when the C1 is out and sees an upper cervical chiropracter weekly for adjustment as she can feel the difference immensly when the C1 is out and in place. So this has raised LOTS of questions and confusion for us. When we were to Leipzig, Germany for ultrasound diagnoses before our other daughter had her surgery with Prof. Sandmann, we had Prof. Sholbach do ultrasounds for daughters abdomen, pelvis and he chose on his own to check out the JVâs from the head symptoms they were having. He found mild MALS, and more compressed Nutcracker and May-Thurner and pelvic congestion but both he and Prof. Sandmann did not recommend surgery as she was still healthy and functioning to a degree but not her full potential with LOTS of stomach pain and headaches. They gave her exercises to do as they felt that would benefit the most. Also her jugulars had some major blood flow problems so they thought with exercising it may open the venous flow in abdomen and neck. Well, here we are one year out and she is facing severe head and neck pain, unable to do much other than care for herself, and she feels her problems are all neck related as her neck is unstable. She has to be so careful how she manuevers her body so her neck does not pop out creating severe head pain and pressure. And she is not able to do her exercises as that creates too much head pain and lack of blood flow in her headâŚ. with symptoms of black outs and nausea. For 10 months she exercised and felt much improvement on the compressions in the abdomen. The stomach pain that she has now she says is different than she had previous to exercising.
With all this in the background and all the exercising she did is why we felt âpunched in the stomachâ as she tried HARD to avoid surgery! So who do we believe? Get another IJV ultrasound? Follow up with Dr. Hepworth and see what his thoughts are whether he thinks focusing on neck instability would merit treatment for that versus going for abdominal surgery? Get a CTA of abdomen and pelvis for opinion?
We did reach out to the Centeno-Shultz clinic there close by Denver for their advice for the neck instabilities while we are in the Denver area for the April 1 surgery with Dr. Hepworth for our other daughter. We hope for answers for a path forward, but so much to figure into the picture is overwhelming!!!
I should say too that I am trying to get an in office appointment scheduled while we are in the area too but so far do not have that time slot reserved as Kristen has not gotten back to me after she left me know time slots. When I told Sarah we wanted an in office visit she said it should be easily doable and she will let front desk know. Well, I am not hearing anything from front desk and waiting on Kristen instead as she reached out with times and days. So we hope for an appointment slot soon or maybe that is not what we need to do at this timeâŚ..
@BuckeyePrincess - Iâm very sorry your appointment wasnât as helpful as youâd hoped. That type of experience is frustrating to say the least.
If youâre still in the Denver area, Iâd make a trip to the office to get that appointment made so you can have an in-person appt while youâre in town. I think a follow-up with Dr. Hepworth is the best next step as he doesnât always 100% agree w/ what his NPs see/say, but they do provide a âsnap shotâ for him to consider in advance of seeing a patient the first time. Were any of the suggested appointment slots a chance for your daughter to see Dr. Hepworth or were they just openings for another NP appt?
I think waiting to get Dr. Hepworthâs opinion would be best before considering further scans for your daughter. Let him tell you what he thinks her next steps should be, then you & your daugther can decide what seems optimal for her.
1 Like
So frustrating that you didnât get any clear answers, it does sound like it would be more helpful to see Dr Hepworth as well before you make plans⌠Itâs such a minefield when thereâs multiple compression syndromes to know what to do for the best. And certainly sounds like her neck instability itâs contributing too, so would be good if you can get an appointment for when youâre in Denver.
Iâm sorry sorry that your girls are having to deal with all this, and for you too as a parent trying to support them
1 Like