Hi everyone,
I’ll be having surgery May 16 at the hands of Dr. Larry Lo and Dr. Costantino in NY. My hope is to share my case so that other’s can learn what to look for when diagnosing themselves for Vascular ES, VES, or Internal Jugular Vein Stenosis, IJVS. Also to have a log of how my recovery goes.
My symptoms are purely IJVS related as my styloids are not long, but are very thick. Also based on my CT images I can see larger protrusions coming from the C1 that I and my surgeons believe is the main cause of the stenosis.
Symptoms
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Consistent pressure in the forehead. Never goes away, I go to sleep its there, I wake up it’s there. If I go upside down I get immense pressure in the same way. This was my main complaint for almost 20 years until new symptoms started to form.
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Headaches - I do get some bad headaches a few times a month. Not too much of an issue, I have learned not to look down for extended periods of time as this will induce a headache.
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Light sensitivity - I cannot stand a light source in my direct or peripheral vision. At work and at home I have a low light source behind me.
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Visual distortions - While I have been check multiple times by ophthalmologists I have a visual haze that is worse in low light situations. Also noticed ghosting from reflective surfaces when I move.
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Tinnitus - High pitched electrical hum that can switch from ear to ear. When I clench my teeth really hard the sound intensifies.
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Dizziness - minor dizziness, I get hit with little waves of dizziness every once in awhile. I call them waves because it comes and goes so quickly.
Previous treatments
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Honestly for the longest time I thought I had bad allergies. So I saw an allergist and got allergy shots for years.
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I have seen 3 ENTs over the course of a decade.
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2 neurologists. 1 looked at my scans and missed the signs of IJVS and the other refused to look at the scans, probably because she didn’t want it as a liability.
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All sorts of other things like eating certain foods and trying prescribed medications various blood testing from my PCP. Nothing helped and if anything just made me feel worse.
My Scans
I had an MRI with contrast taken for “headaches” in 2010 and that is where the radiologist should have seen that my right transverse sinus was hypoplastic and at least commented on it. Because I had the same MRI repeated in 2021 and 2022. From those scans I repeatedly went back to look at the images and eventually found the defect myself. That led me to finding that in addition to a hypoplastic right transverse sinus, I have bilateral internal jugular vein stenosis.
I only mention this because if you think you have IJVS please learn how to read your own scans or post anonymous pictures with your scans on this form so others can help you. Don’t depend on radiologists or neurologists to figure this out for you.
Axial MRI with contrast of the transverse sinuses - Red outline is hypoplastic right transverse sinus. The blue outline is the left transverse sinus (it looks like there is a missing piece because it goes higher up in the scan and then comes back down again)
Sagittal MRI with contrast of left jugular vein - Jugular vein outlined in red. Notice the indentation caused by C1.
Axial MRI at the level of C1 - Blue arrow points to compression of left jugular vein. You can also see the right jugular vein is compressed on the opposite side. See the measurement of 1.32mm.
Axial MRI at the level of C2 - See how the IJV opens up to a normal diameter of 9mm just at C2 only an inch/few centimeters further down.
Left Styloid (outlined in red) with distance to C1 - You can’t see the IJVs on CBCTs, but its jammed between those 2 pieces of anatomy. This is my dominant side and should be doing the majority of the blood outflow.
Right Styloid (outlined in red) with measurement to C1- this is the hypoplastic side. So it is much less important
Surgery
May 16, I will be undergoing styloidectomy and a C1 shave/resection on the left side. Dr. Costantino will perform the incision, styloidectomy and removal of minor muscle tissue to make a path to C1 and then Dr. Lo will shave down the outer edge of C1 to make an area for the jugular vein to drop in.
I should also mention that once I discovered I had a stenosis I initially consulted with Dr. Patsalideds and he did a venogram/angiogram with manometry. Because he focuses on stenting procedures and not styloidectomy or C1 shaving he referred me to his colleague Dr. Lo. I will post those separately they also have some interesting and relevant results, but I feel like the MRI with contrast was a dead give away for VES/IJVS. You just need to know what to look for.
@KoolDude @Buzz I realize we have very similar cases because of our similar anatomy and have been watching your stories closely.
. No doctor or radiologist would do that for you. I also would like to say good job 
. You really have my respect learning/figuring this stuff out and helping folks as I saw in a number of recent posts. You really must be good at reading MRIs to get the compression out of an MRI imaging which, unlike, CT does not show the bones well.
and I will be following your case closely as I am myself searching for C1 atlas shaving. I am assuming Dr Lo has done this a number of times before. The thing to watch for is Vertebral Artery and Accessory nerve which are close to the C1 atlas. So I hope Dr. Lo pays extra attention to them during the surgery.
