I had a CTV without rotation and an MRV with rotation and the latter was the clearest picture we got.
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Absolutely amazing.
I’m going to be talking to my Drs about this so this is great. Do you have any post of scans to compare the flow / ijv dilation?
Did your Drs see the nerve on any of the scans or was this something that was only discovered during surgery?
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Thank you. I hope you feel better and better every day! Keep us posted when you feel up to it!
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It’s true that MRV has no radiation. But MRV usually uses Gadolinium-based contrast which for some people has devastating life-long effects. Google for Gadolinium Deposition Disease, and try to find the latest research on it. I wouldn’t be surprised if in about ten years Gd based contrast will be used only in extremely rare cases, as we only now start to understand its real side effects.
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Wow thanks for sharing. It is very similar to the video @Buzz posted.
That has to be a huge relief, now knowing you had that nerve constricting your IJV this entire time.
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Thank you–I didn’t read these to see how much exposure is risky but it’s important to know about:
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Two “main” names are Dr Richard Semelka (radiologist) and Dr Brent Wagner (nephrologist)
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@BriCSP - I’m so glad your surgery is done, & your IJV has been liberated. I hope you get excellent results. You’ll most likely have pain on & off for some months as your surgery was pretty involved. The good news is, our bodies are excellent healers when we take care of them & are patient. Listen to yours, rest when its asks, & take it easy on your better days for the first couple of months post op at least.
I really appreciate you posting your pictures & sharing such a detailed explanation about of your surgery. 
@Buzz - I had the exact same thought. Dr. Lawton did an IJV decompression which occurred in a person w/ an elongated styloid but in the end it was the spinal accessory nerve causing the compression.
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@elijah - nerves can’t typically be seen in the types of scans @BriCSP had. There is a very specialized scan done via FIESTA MRI - a neurogram - that shows nerves. In most cases issues like BriCSP’s are found during surgery.
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In the video, where he is exposing, C1 transverse process, and he says muscles are stripped from the bone… Does that mean all muscles are stripped?
I believe so. There’s a chance I will need a c1 shave and I’m trying to learn more about the potential long term affects of removing those muscles and bony mass.
It does not seem like there’s a ton of data on this long term. Also I’m still trying to figure how some surgeons decide to take the entire lateral mass off exposing the vertebral artery, while others shave off just a groove without removing the bone to the artery level
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Did all the compression store
Show up on pre testing? Or did they find it in surgery? So glad you had a good experience so far, sending good thoughts and hopes for a speedy recovery
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Sorry, the forum is telling me to use quotes rather than writing a million individual replies. Trying again!
My CTV and MRV both showed compression between the C1 and styloid, especially with left head rotation. I think what they found in the surgery was that the styloid was there but it was soft and not actively pressing—but the nerve was just completely cutting it off. I always had a hunch that nerves were involved somehow, because a lot of my seemingly related symptoms were nervy—eye tearing, diffused pain, nerve entrapment and pain down my right arm, etc. Nerves don’t show up on those scans, and my surgeon said he’d never seen anything like it (he’s done about 100 of these venous compression surgeries), though as others in the thread have noted, there have been other cases like it.
No postop scans yet—I have my follow up on Wednesday, but not sure if he’s going to order more scans.
See above!
Literally right before I went to sleep in the OR I saw the neurosurgeon, who didn’t have time to talk to me in the prep area because he was on another case. He confirmed he was “shaving millimeters” off of my C1 transverse process. However, after the surgery my ENT surgeon said “removal” of the transverse process several times. I was too dazed to ask about it then, but I plan to at my follow up on Wednesday. The overall vibe was that the surgery was more extensive than anticipated—I wonder if they needed to be more aggressive than they originally anticipated, or if it’s just a matter of semantics.
Thanks so much for all your well wishes, everyone! Totally hear you re: the ups and downs of recovery @Isaiah_40_31. I’m fully off of pain meds as of today (6 days out) and have a lot more energy, but still taking it slow and resting a bunch and definitely still feeling a lot of discomfort and heaviness around the surgical site. Onward!
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Thank you very much for this info. Please keep us updated.
Was Dr Constantino the one who diagnosed you with IJVS or does he just perform the surgery?
My pain physiatrist was the one who diagnosed me with Eagle’s—Dr. Siefferman at Manhattan Pain Physiatry. I actually went to him for hip pain, but he asked me to describe all the pain I have, and I mentioned the right-sided migraines and head/neck discomfort I’ve had for ten years, and he diagnosed it purely on symptoms and physical exam (noticing that I was holding my head strangely to guard my right side, and that my mouth opened to the left). A CT scan confirmed the elongated styloids (bilateral) and possible jugular vein compression on the right, and then I found Dr. Costantino through this group for the follow up. He ordered the CTV, which showed fairly significant right IJV compression but not enough to make him want to operate immediately (he’s pretty conservative), and then the MRV with head rotation showed that it was actually very severe compression on the right and even fairly significant on the left, which we’re leaving alone for now.
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Wow. 10 years that’s crazy. Sorry you had to go through that for so long.
I only have one working IJV which is my right dominant side, my left side is completely clotted. I already had bilateral styloidectomy and a follow up MRV but will be having a CTV and angiogram/angioplasty and depending on how those go may need c1 resection as well.
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Not really. But I’m glad you did more research. What did you learn?
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@elijah - the bone shaving tool that is now used for surgeries in tight spots where nerves & vascular tissues could be damaged is specially designed to work only on bone. It has a built in safely of some sort to protect soft tissue. I think someone posted a link to info about this device, but it was awhile ago. You can do a Google search for more info.
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I’m sorry your previous surgery didn’t resolve everything for you! Dr. Costantino mentioned that it’s only in the past few years that they’ve discovered better techniques to improve the likelihood of decompression—shaving the C1, doing the fasciotomy, etc. I hope you find what you need for relief!
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What’s the process of booking with Dr. Costantino. Does he do telehealth. If I were to show him all my scans and history is he the type to book a surgery based off that (assuming it’s compelling) or does he require you to go through a NIR that he works with?