@stuuke - FI - NAL - LY! This has been such a long, drawn out process for you. I’m soooo glad you have an appt.w/ Dr. Fargen!! I’ll be praying that he’s the end of the road for you i.e. he’ll find what needs fixing & will have the ability to fix it even if it takes a couple of trips to NC. 
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Initial appointment is today. Any recommendations for questions to ask? I’ll report back on how it goes. Thanks everyone for the well wishes and support.
Great! Ask his thoughts about sedation/anesthesia effect on the pressure gradients. Research suggest less is better if you can tolerate it and he is okay with that. This would also allow you to have a dynamic exam for provocative positioning ie: turning your head when taking pressure gradients along the IJV.
Sending you clear communications and the most helpful visit to move you forward!
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I’m looking forward to hearing how your appt. went, @stuuke.
Initial visit on Friday. Dr. Fargen gave me a good amount of time. He was very open on how new all of this stuff is and that everything they do is pretty experimental. It was kind of interesting that he said he hadn’t had patients with autoimmune issues but he believed me and nothing surprises him any more. I go through the procedures tomorrow. A little nervous since I thought I would be completely sedated through it but they actually have you respond as they do the venogram and LP. Hoping they find some answers though.
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@stuuke - I’m really glad you’re getting the venogram tomorrow & will pray for Dr. Fargen to see everything that’s amiss. It would be so great for you to get an answer!
As @JustBreathe mentioned, unsedated is the best way to have a dynamic venogram as it’s thought sedation can potentially mask vital info. Apparently you’ll only feel pressure not pain during the procedure.
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I sent him a message through the portal to ask about sedation. I’ll try to ask before the procedure as well.
Thanks
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Praying it goes well tomorrow & shows the solution to your health issues
Back in the hotel. I’m trying not to be negative but the TLDR version is the procedure didn’t provide any clear answers. I mentioned to Dr. Fargen about doing the procedure without sedation and he wasn’t really interested in changing things up. The venogram went fine as well as the LP. I’ll confirm these numbers once the procedure notes are posted but I believe my pressure was at a 20 and they drained me down to around a 9. I didn’t really notice a difference in my symptoms after the drop. I did have a pretty severe caffeine headache from not having any coffee so it was a little hard to separate the symptoms.
Dr. Fargen said there were some pressure gradients when my head was turned. It sounded like I had a gradient near the upper part of the jugular when turned one way and the other side would have it on the lower part. He didn’t have much confidence that a stent would resolve my issues. He said it was at 50/50 but that he would do it if I wanted to pursue it. He recommended either doing one in the upper left, one in the lower left or both. The risk for the upper jugular is having shoulder weakness. The risk for the lower is that he hasn’t done as many and when he used smaller stents one patient had his fall into the heart. He uses larger stents now and so far hasn’t had any other issues. He said over and over that they don’t know much now regarding these conditions or treatments. He said I could wait a year and see if they know more. He did order a new prescription for me to try but I’ll have to check the notes to see what it was. I’m happy to post any numbers from tests if you think it will help.
The other option he mentioned is that I could give Botox another try. He mentioned a neurologist and I think they were in Michigan.
I guess given his reputation I had hoped for more but they can only work with what they see.
Very disappointing for you & us since we hoped & prayed there would be clear evidence of something treatable. It’s true that vascular outflow obstruction is a new frontier that doctors are becoming aware of & beginning to look into how to help patients manage. There is much yet for the doctors who are studying/researching VOO to learn both regarding identifying it & where in the body the problem(s) is/are & then how to best treat it. Dr. Fargen’s comment. “if you can wait a year” was a wise one as a year can make a huge difference in what doctors learn about treatment of new diagnoses.
I am still a little “at sea” when it comes to understanding the pressures & gradients, but there are forum members who do understand it all & will hopefully give you some good feedback if you post your results.
I will continue to pray for you to have wisdom regarding what to do next. Maybe that new Rx will be really helpful for you.
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So sorry that it wasn’t conclusive & obvious what was happening. Thinking of you…
I am curious to see your measurements. It is incredibly frustrating when the problem isn’t completely obvious pointing to a clear path forward. You have gained good information and that is always helpful. Now Dr Hepworth needs to talk to Fargen. Dr H is still your leader and always brings more insight when puzzle pieces are put out on the table.
You made a huge effort to get here and that is incredible. Keep your head up and let this percolate. One step at a time, you can do this!
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I think this is the bulk of the numbers. Sorry for the long post.
VENOGRAPHY and VENOUS MANOMETRY: RIGHT INTERNAL JUGULAR VEIN:
Venous pressure measurements were as follows: Right internal jugular vein (bulb): 14 mmHg Right internal jugular vein (C4): 14mmHg Right internal jugular vein (C6): 14 mmHg Central venous pressure: mmHg
DYNAMIC RIGHT INTERNAL JUGULAR VEIN VENOGRAPHY WITH MANOMETRY: RIGHT INTERNAL JUGULAR VEIN, HEAD TURNED TO LEFT:
Right internal jugular vein (bulb, HEAD ROTATED TO LEFT): 18 mmHg Right internal jugular vein (C4; HEAD ROTATED TO LEFT): 14 mmHg Right internal jugular vein (C6; HEAD ROTATED TO LEFT): 13 mmHg
RIGHT INTERNAL JUGULAR VEIN, HEAD TURNED TO RIGHT:
Right internal jugular vein (bulb, HEAD ROTATED TO RIGHT): 20 mmHg Right internal jugular vein (C4; HEAD ROTATED TO RIGHT): 20 mmHg Right internal jugular vein (C6; HEAD ROTATED TO RIGHT): 17 mmHg Right internal jugular vein (C7; HEAD ROTATED TO RIGHT): 14 mmHg
LEFT INTERNAL JUGULAR VEIN: The diagnostic catheter was then navigated over a Terumo glidewire into the left internal jugular vein above C1. 2D hand injected angiography was then performed centered over the patient’s neck in the AP and lateral projections with the catheter positioned in the left internal jugular vein and the images were interpreted. Angiography demonstrates moderate stenosis of the internal jugular vein at C1. There are dilated suboccipital venous plexus collaterals. Strong injection did not acutely exacerbate symptoms.
SUPERIOR SAGITTAL SINUS: A Rebar-27 microcatheter was then navigated through the diagnostic catheter over a 0.014 microwire into the superior sagittal sinus. The wire was removed. A super-selective venogram was then performed through the microcatheter in the superior sagittal sinus, and images were interpreted. Venography shows predominant venous drainage via co-dominant right and left transverse-sigmoid sinus pathways. There is no evidence of venous sinus stenosis present. Venous manometry was then performed in the superior sagittal sinus. Venous manometry was then performed as the microcatheter was withdrawn into the diagnostic catheter.
Venous pressure measurements were as follows: Superior sagittal sinus: 16 mmHg Torcula: 15 mmHg Left transverse sinus: 15 mmHg Left transverse-sigmoid sinus junction: 15 mmHg Left sigmoid sinus: 14 mmHg Left internal jugular vein (bulb): 14 mmHg Left internal jugular vein (C4): 13 mmHg Left internal jugular vein (C6): 13 mmHg Left distal brachiocephalic vein: 11 mmHg Left proximal brachiocephalic vein/superior vena cava: 11 mmHg Central venous pressure: 11 mmHg
DYNAMIC LEFT INTERNAL JUGULAR VEIN VENOGRAPHY WITH MANOMETRY: LEFT INTERNAL JUGULAR VEIN, HEAD TURNED TO LEFT:
Left internal jugular vein (bulb, HEAD ROTATED TO LEFT): 16 mmHg Left internal jugular vein (C4; HEAD ROTATED TO LEFT): 16 mmHg Left internal jugular vein (C6; HEAD ROTATED TO LEFT): 13 mmHg
LEFT INTERNAL JUGULAR VEIN, HEAD TURNED TO RIGHT
Left internal jugular vein (bulb, HEAD ROTATED TO RIGHT): 17 mmHg Left internal jugular vein (C4; HEAD ROTATED TO RIGHT): 14 mmHg Left internal jugular vein (C6; HEAD ROTATED TO RIGHT): 13 mmHg
LUMBAR PUNCTURE PROCEDURE:
A 22 gauge Whitacre spinal needle was inserted between the L3 and L4 lamina using fluoroscopic guidance. Images were saved to PACS. Brisk CSF was obtained. Opening pressure was measured at 20 cm of water. 21 mL of fluid was withdrawn. Closing pressure was measured at 10 cm of water. The needle was then removed.
CONCLUSIONS: 1. Normal cerebral arteriogram without aneurysm or arteriovenous fistula. 2. There is no significant stenosis of the co-dominant, right or left transverse-sigmoid sinus venous outflow pathways. Venous sinus stenting is unlikely to be of benefit. 3. There is mild stenosis of the right internal jugular vein at C1 in the neutral position but without an associated pressure gradient and no significant pathological dilatation of suboccipital venous plexus collaterals. Provocative testing in the jugular bulb did not acutely worsen symptoms. There is rotational stenosis of the right internal jugular vein at C1 with leftward head rotation (4 mmHg gradient) and at C5-6 with rightward head rotation (6 mmHg gradient). 4. There is moderate stenosis of the left internal jugular vein at C1 following styloidectomy in the neutral position with an associated 1 mmHg pressure gradient. There is pathological dilatation of suboccipital venous plexus collaterals. Provocative testing in the jugular bulb did not acutely worsen symptoms. There is rotational stenosis of the left internal jugular vein at C1 with rightward head rotation (3 mmHg gradient) and at C5-6 with leftward head rotation (4 mmHg gradient). 5. Mild elevation of central cerebral venous pressures (16 mmHg) with elevated central venous pressures (11 mmHg). 6. Elevated intracranial pressure with opening pressure of 20 cm of water.
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Dr. Hepworth isn’t available until December but I went ahead and scheduled a Telehealth appointment.
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@stuuke Your results are pathological. The question is how to address this and if there is anything downstream in the central vascular corridor which may also be a contributing factor. Open minds willing to look at the big picture are required for the likes of us. Glad you got on Dr H’s schedule but sorry it is so far out. I wonder if Dr Hui would be willing to give an opinion on these results given they are all in this newly formed group for patients like us. Did you get in Dr Hui’s system or were you waiting on Fargen? Another opinion option would be Dr Annest at the Vascular Institute of the Rockies. He is the pioneer of TOS and all things vascular in the neck but is now only consulting having retired from surgical practice. I am not sure if a referral is required now.
Keep your chin up, one step at a time. There is an answer for you and it will be found!
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I haven’t booked anything with Dr Hui yet. I wanted to see how it went with Dr Fargen first and anything I do with Dr Hui will cost me close to $1000.
Oh for sure! I was just thinking now that you have had the test maybe he would give you an opinion as a phone consult but I’m not sure if he does this. I know Fargen and Hui talk a lot and maybe they would discuss your case.
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If you do end up doing an in person consult with dr Hui, I am in the area and could help with transportation or finding lodging or ?
The office is going through a staffing fluctuations, most receptionists here have a high turnover rate for some reason
And I find some times the referrals don’t get to the right people soon enough and have learned to call after the first week
We have to be our own advocate and be persistent
Don’t take the delay personal, as this has been happening to me in Hawaii for quite some time with all of my referrals
That being said Dr Hui and nurse Jones have been the absolute BEST in my now 6 year maze of the med system
Ask to speak with nurse Jones, she is the best super nurse
I will pray for answers and healing for you my man 
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I have been on Brilinta (Dr. Hepworth likes it for ES patients) twice. Both times I found it takes over 2 weeks on it to see relief (less head pain, pressure). I don’t know why it takes me that long but it seems to be consistent. When I went off it (prescription ran out and there was confusion getting it filled) I was in a world of hurt.
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Thank you for that information @juliezuber. It’s very helpful. I’m glad you’re seeing a really good & compassionate doctor!
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