@stuuke -
Thx for the link to Dr. Cha’s video. I’ll have to watch it piecemeal because of how long it is, but look forward to learning from her, as recently, her name has come up on our forum more frequently. Without reading back through this discussion thread, I recall you have an appointment with her at some point this fall, or am I mistaken?
HOORAY for FINALLY getting a response from Dr. Hepworth’s ofc, an appt w/ Alison & an upcoming appt. w/ the good doctor himself! 
She really seems to be dialed in to the muscle tightness issue which seems to be where I struggle. I go to Minneapolis next week and have imaging Wednesday with an appointment with her later in the day. Friday they do a trial novocaine injection and then if that goes well they push for insurance to cover the Botox injections.
One other kind of random note but I noticed that one of my major flare-ups last summer took place after flying home from Europe so after sitting upright for 16+ hours in one day. This current flare-up started right after driving 8 hours two days in a row. I seem to just lock up when in a seated upright position for an extended time and can’t get things to loosen up.
I hope that the appointment , imaging & novocaine injection are all helpful next week @stuuke , let us know how it goes 
Thank you both for sticking with me through over 400 posts 
Case studies about 38 minutes in.
@ stuuke - Thank you. That’s helpful info!
We’ll never let you go until you stop updating & let us know you have symptoms resolution or are moving on. That’s how we roll here! 
Also she takes questions at the 1 hour mark and most of those are pretty specific questions from other doctors so might be able to skip that section.
Results from CT Scan with Dr. Cha
IMPRESSION:
1a. Right: Moderate narrowing of the upper right internal jugular vein
along the C1 transverse process in the neutral position. This persists
with head turned to the le!.
1b. Le!: Moderate to severe narrowing of the upper le! internal
jugular vein posterior to the styloid process, resolving with head
turned to the le!.
The physiologic/clinical significance of these findings are uncertain
and can be seen in the absence of symptoms.
2. Patent dural venous sinuses and major deep intracranial veins.
FINDINGS:
No thrombosis or stenosis of the major intracranial dural sinuses or
deep cerebral veins.
The right styloid process measures 19 mm. The le! styloid process
measures 20 mm.
RIGHT:
In the neutral position, there is moderate narrowing of the right
internal jugular vein anterior to the C1 transverse process with
residual lumen diameter 3 mm. With head turned to the le!, this
persists.
LEFT:
In the neutral position, there is moderate to severe narrowing of the
le! internal jugular vein posterior to the le! styloid process with
residual lumen diameter of 2 mm. With head turned to the le!, this
resolves. Mild narrowing of the mid le! internal jugular vein deep to
the sternocleidomastoid muscle with head turned to the le!.
Mild to moderate scattered paranasal sinus mucosal thickening. Changes
of functional endoscopic sinus surgery on the le!. The imaged skull
base, intracranial and orbital structures are within normal limits. No
suspicious finding in the visualized superior mediastinum/thorax.
Clear lung apices.
Multilevel cervical spondylosis. Ossification of the nuchal ligament
inferiorly.
Not sure why it didn’t copy left correctly.
Ultrasound results:
IMPRESSION:
1. RIGHT:
A. No subclavian venous stenosis suggested at rest.
B. mild flow limitation is noted at the right subclavian vein
during upright and 135 degree extension/military maneuvers.
C. No internal jugular venous stenosis suggested with maneuvers.
D. No arterial stenosis suggested with maneuvers.
2. LEFT:
A. No subclavian venous stenosis suggested at rest.
B. No subclavian venous stenosis suggested with maneuvers.
C. No internal jugular venous stenosis suggested with maneuvers.
D. No arterial stenosis suggested with maneuvers.
FINDINGS:
RIGHT:
REST:
INTERNAL JUGULAR VEIN: 61 cm/s, phasic, fully compressible
INNOMINATE VEIN: 36 cm/s, phasic
SUBCLAVIAN VEIN, medial: 49 cm/s, phasic
SUBCLAVIAN VEIN, mid: 32 cm/s, phasic, fully compressible
SUBCLAVIAN VEIN, lateral: 60 cm/s, phasic, fully
compressible
AXILLARY VEIN: 53 cm/s, phasic, fully compressible
MID SUBCLAVIAN VEIN, sitting erect:
0 degrees: 101 cm/s, phasic
90 degrees: 56 cm/s, phasic
135 degrees: 219 cm/s, monophasic
180 degrees: 69 cm/s, phasic
INTERNAL JUGULAR VEIN, sitting erect:
Neutral: 175 cm/s, monophasic
Right: 240 cm/s, monophasic
Le!: 147 cm/s, phasic
Extension: 199 cm/s, phasic
Flexion: 199 cm/s, phasic
PPGs:
Baseline: Normal
Arms 90: NormalArms 180: Normal
Military: ABNORMAL - diminished
Military head right: Normal
Military head le!: Normal
LEFT:
REST:
INTERNAL JUGULAR VEIN: 108 cm/s, phasic, fully compressible
INNOMINATE VEIN: 55 cm/s, phasic
SUBCLAVIAN VEIN, medial: 66 cm/s, phasic
SUBCLAVIAN VEIN, mid: 31 cm/s, phasic, fully compressible
SUBCLAVIAN VEIN, lateral: 28 cm/s, phasic, fully
compressible
AXILLARY VEIN: 44 cm/s, phasic, fully compressible
MID SUBCLAVIAN VEIN, sitting erect:
0 degrees: 116 cm/s, phasic
90 degrees: 43 cm/s, phasic
135 degrees: 98 cm/s, phasic
180 degrees: 134 cm/s, phasic
INTERNAL JUGULAR VEIN, sitting erect:
Neutral: 193 cm/s, monophasic
Right: 77 cm/s, phasic
Le!: 290 cm/s, phasic
Extension: 236 cm/s, phasic
Flexion: 227 cm/s, phasic
PPGs:
Baseline: Normal
Arms 90: Normal
Arms 180: Normal
Military: Normal
Military head right: Normal
Military head le!: Normal
Onset: Normal
I had an imaging appointment on Wednesday morning and my first appointment with Dr. Cha late Wednesday afternoon. My procedure was scheduled for Friday morning. I started off with imaging in the morning. The imaging went really smooth. They actually got me in early and the CT took about 10 minutes. They were able to do my ultrasound immediately after and that took about an hour.
First let me say that Dr. Cha was great. She was running about half an hour behind which is nothing unusual, especially when your appointment is at the end of the day. She took information and discussed my case for over two hours. The janitors were cleaning the floors when I left and we were the only other people in the building. She never rushed me and answered any questions that I had. She was also just a nice pleasant person to talk to. Dr. Cha figured that we would have to do a lidocaine injection first since insurance typically takes a couple of weeks to approve the neurotoxins. The lidocaine is good because you know right away if it helps your symptoms. The down side is it only last 4-6 hours so you have to come back for the neurotoxin injection. My insurance ended up approving the injections so she suggested we go ahead with the full treatment and just do a little stronger dose. The injections took less than 20 minutes and went smoothly. I won’t know for 2-3 works if it helps with my symptoms. If it does she recommends that I get surgery to clear some of the muscles out that are causing the issues. I can also continue getting shots every 3-4 months until I’m able to get the surgery.
Kind of crazy but the left styloid I had removed is still longer than the right and there is still compression there.
Wow, who did the your left styloidectomy? Not sure of your past history. Did she explain the pressures/flow and what monophasic vs phasic means? I like the latest video you posted with Dr Cha. She explains how there can be multiple compressions causing issues, very interesting and seems to be on target. How did you run across that. I would like to see more. She seems like an awesome Dr. She explains venous congestion well. I’m currently trying to set up an appointment for TOS with her. I also have a couple of styloids with IJV compressions that need to be removed.
Dr. Hepworth did my styloidectomy. She mostly explained how her imaging results lined up with Dr. Fargens pressure measurements.
One thing I forgot to mention is that she had not seen any patients with similar autoimmune issues to mine so that still seems to stump everyone. Dr. Hepworth is focused on Mast Cell Activation and I’ll probably do the test this week.
I do not know what the pressure or flow measurements mean. Did she say if you have compressions and if so where? Do you know if you have EDS or a connective tissue disorder?
I’m sorry you had a styloidectomy and still have IJV compression and the need for possible revision. Dr Cha in her webinar stated that there can be multiple areas of compression for venous congestion from ES/TOS in the head and neck. And that each compression (or multiple) surgery/surgeries may be necessary to be sufficient to relieve the symptoms of venous congestion. I’m still curious on how you found the grand round’s webinar with Dr Cha? I would like to follow further webinars with her.
She said I had two compressions. They were at the styloid/scm and one at c1. My issues were caused by a whiplash and concussion.
I believe the webinar was posted in the Jugular Venous Outflow Disorders (Cerebral Venous Congestion) Facebook Group. I’ve seen a few more roundtable videos with her and she has always been really impressive.
I’m glad that she was so helpful, she sounds like a lovely & very competent doctor! So sounds like the SCM muscle could be causing compression & maybe a C1 shave might be needed, or wait & see how the injections work? It’s very frustrating that it sounds like not enough of the styloid was removed too… Would she do the surgery to trim muscles if the injections work? Praying that you get a clear path forward
