HIP HIP HOORAY!! Glad you’ll have a surgery date soon!!
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Hey there, @BriCSP! That’s fantastic news! I’m curious, do you know the name of the hospital or location where your surgery will take place? Sending you all the positive vibes and well wishes!
Great news for you, & not too long to wait! 
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Totally forgot to ask, but I was also just assuming it was Lenox Hill. I’ll confirm when they contact me to schedule and let you know!
@BriCSP, your in good hands with Dr. Costantino. Like I said in my recent posts, I was in little to no pain from the surgery itself. The drain is uncomfortable the first night and the IVs in your arms are annoying, but you get rid of all that in 24 hours.
I did need Tylenol to deal with residual headaches the night of my procedure and for a few days afterwards, but that was the only pain killer I took.
I just had a telehealth follow up with him on Friday. I told him I was amazed at how little pain I was in after surgery. He just remarked in his calm voice that he’s done well over a 100 of these cases now and has perfected minimizing the damage and making the recovery easy for his patients.
If you feel like sharing, I would love to see your MRV or CTA scans. Either screenshots or uploaded to https://www.dicomlibrary.com/. My radiologists and local neurologist said there was nothing remarkable about my scans until Dr. Lo and Dr. Costantino saw them.
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Thank you for letting me know! When I was there on Friday they actually said a patient who had surgery a few weeks ago said they were feeling better—that must have been you! I feel like they even said “Greg,” which I see from your profile is your name. So funny. And glad to hear it!
I’m a little annoyed about the imaging situation, because I did it at Lenox Hill Hospital and they only upload the report, not the images themselves. That’s why I was worried that the MRV wasn’t definitive, because the report made it sound mild but on the images themselves it’s very clear that both my IJVs are compressed in neutral and the left is significantly compressed with rightward head turning and completely cut off on the right with leftward head turning. Both Costantino and Tobias audibly gasped when Kelsey brought up the leftward turning image. Lenox Hill said they can make me a disc, and then I guess I’ll go back in time 5 years to use a computer with a disc drive, ha. If I find somewhere to view it I’ll definitely upload a screenshot.
I hope you continue to improve post-surgery!
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Yep, that is the only way to get your scans is via CD/DVD. The report is basically useless and as you have seen can actual work against you. They won’t share the scans online, no hospital will. Your lucky because you are local and can go pick it up. I had them ship it to me in FL, what a mission that was.
Thanks, I hope so too. Still have a fair amount of swelling, so once that goes down I will have a clearer sense of how I feel.
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I’ve had scans done at NYU in the past, and their portal allows you to view all the images and to let anyone else view them with a unique link and password (which expires after 3 days). I didn’t realize how good I had it!
I found a disc drive at work (and a PC to open the program on). Since it was an MRI there were a zillion images, but these are the four that the radiologist called out in the report and that I looked at with Costantino and Tobias. We didn’t look at anything from the neutral position when we were together, but that’s probably because we already saw what that looked like in the CT-V scan. The notes from the radiologist are below the relevant image.
With head turned to right, the right IJV expands in caliber at the level of aforementioned narrowing in neutral position, (series 95, image 65) and the IJV narrows at the level of carotid bifurcation.
The left IJV remains narrowed between styloid and C1 (image 128).
With head turned to left, the left IJV expands in caliber at the level of aforementioned narrowing in neutral position, (series 98, image 61), and is narrowed at the carotid bifurcation level.
The right IJV further collapses (series 98, image 124)
The last image is what made the two surgeons audibly gasp and sealed the deal on us moving forward, though they did say neither side is in great shape. All my symptoms are on the right and that’s compressed the most, so we’re going to start there and see where it lands us.
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Thanks for sharing. The images are very clear and you have a good view of your entire head down to shoulder level.
This brings up something @KoolDude saw in my venograms. That rotating your head to the left or the right can create a temporary stenosis on that side at a lower level than C1. Your radiologist suggests it is at the level of carotid bifurcation, so around C3-C5. @KoolDude suggested it may be the jugular getting pushed by the SCM and also possibly the ICA. Did Dr. Costantino address this with you or just the stenosis at C1?
What symptoms would you say are the most prominent? Do they get worse if you hold your head turned to the left for a couple minutes?
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@GCD I think that is what is happening.
You can see how the left SCM moves interiorly (specially the mid part) when you turn the head to the left (Red Arrow) and you can see how it can potentially compress the IJV (blue bar) against Carotid ( bright green bar). Again this is my thinking but can’t think of no other structure in this compression.
You can see the video of the screenshot above below.
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Nice explanation & illustration @KoolDude. Very helpful!
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Thanks @Isaiah_40_31
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Dr. Costantino didn’t address this, just the C1 compression. I wasn’t sure if any of it was normal. Oy! Maybe I need to email him and follow up? I’m assuming he didn’t say anything to you either?
All my symptoms are right-sided. My ear is partially closed, which gets worse if I’m congested or pressure changes (on a plane, in an elevator, on the train). My suboccipital (or the area around it) is often in discomfort, which radiates up and down the front and back of my head and neck. My sinuses around my eye and into my ear are often in pain or discomfort. My right eye tears a lot. My throat on that side feels achy. My right jaw has TMJ and is very tight/painful. All of this combines into a right-sided migraine with certain triggers, which I feel in my ear, sinuses, head and neck and radiating down my arm and even in my right foot. It’s accompanied by fatigue and brain fog and weakness in my right hand.
Some symptoms—the tearing, the discomfort in the back of my head and neck—get worse when I turn my head to the right. Others—the migraine, the pain in my face and sinuses—get worse when I turn my head to the left. Usually I get a migraine biweekly on average, but last week I had one almost every day. It’s had to know if it was the poor air quality or the MRV itself, because I had my head turned to the left and right for about 15 minutes a side. Both happened on Tuesday and that’s when the daily migraines began (thankfully it’s better now).
Thanks so much for your feedback!
I should also mention that I had a severely deviated septum on the right side corrected in 2019, which reduced the pressure on my right eye and reduced the frequency and intensity of my migraines (and made it easier to breathe!). I also had endometriosis excised from the right side of my pelvis in two different surgeries, and an enormous hernia repaired in my right inguinal canal. And I have a labral tear and impingement in the right hip (all probably related to the endo, which was distorting my anatomy and making it impossible for me to use my muscles correctly for years). I also had a lipoma removed on my right upper back that was along the same fascial line as my head pain, and sometimes that incision seems like a factor in my migraines.
Anyway, that’s my life story. I don’t think it’s a coincidence that all of this is on the right side. As my PT says, I’m a stew.
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WOW! You’ve been through a lot of surgeries & health challenges, @BriCSP! I hope that getting your right styloid removed & IJV opened back up is a game changer for you. I also hope/pray that there is no stenosis at a lower level, however, if there is, addressing Dr. Costantino about the possibility prior to surgery would allow him to deal w/ it during the styloidectomy if there is indeed something going on lower down.
I don’t know anything about him, but some doctors don’t like it when a patient suggests an issue that the doctor may have overlooked in a scan or details that weren’t considered. The results can be either blowing off the patient’s suggestion or a bit of a defensive response. My hope would be that Dr. C is a humble guy who would be willing to investigate to see if there is a potential problem that has been overlooked.
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Thanks so much! Honestly if I didn’t live through all of it I would think it was made up.
I’ve written to Dr. C re: lower-level compression. He doesn’t seem like the type of person who would get defensive—on the contrary, he seems to want to feel like the patient is an active participant and informed before he operates, which I think was one reason he was cautious with me at first. He also seems pretty humble about what he does and doesn’t know. But I have known many doctors and surgeons like what you described. Thanks so much to you and @GCD for looking at my images and giving this advice!! I’ll let you know what he says.
In the meantime, I have a tentative surgery date and place—July 21 at Stamford Hospital. Lenox Hill doesn’t have availability until August. I leave my job on August 11 and—knock on wood—open my bookstore on August 21. It’s all a little close for comfort, but beyond being on the cancellation list there’s not really anything I can do.
Since I’ll be traveling for the surgery, a couple questions/requests for advice: after I get discharged, do you think I’d be up for making the trip home? It’s anywhere from 1–3 hours depending on traffic, or I could opt for Metro North and the subway (or is that crazy??). Would you recommend spending another night in a hotel first?
Thanks so much!! I don’t know where I’d be with any of my health issues without amazing patient-experts and -advocates.
Will you have someone with you for your surgery? I wouldn’t want to make that journey home on the day of surgery, or will you be kept in overnight the first night? It varies…If you’re not being kept in overnight it might be wise to have an extra night in the hotel- you could be feeling sick and dizzy? If someone’s driving you then it should be okay for a drive home the next day, personally I don’t think I’d have fancied a trip on a train which could be busy& you might get bumped…After my first surgery I couldn’t drive for a couple of weeks as it was really uncomfy to turn my head.
Great you have a surgery date, & very exciting to be opening your own bookstore!
Oh good point, that was super unclear! My husband will be with me, and would be doing the driving and/or train shepherding. We don’t have a car but we’d maybe see about borrowing one from a friend. I’ll be in the hospital one to two nights, though I think it’ll likely only be one night. Trying to figure out if he should find somewhere to stay nearby, go back and forth to NY, etc. and then how we’d get home, so it’s helpful hearing about your post-surgical experience. It’s tricky to plan without knowing the exact number of nights, but the thought was that if he had a hotel for two nights, I could stay there the second night if I’m released from the hospital—though I’d probably definitely rather be home ASAP. I was also thinking a train trip might be too overwhelming—more the navigating and transferring and walking than the actually being on the train.
Thanks!
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@BriCSP thanks for describing your symptoms and health issues. I think it helps to relate the imaging to the symptoms you have, so others can compare to their own scans and symptoms. Also, it does seem like the majority of ES and VES patients have multiple issues, so you are not alone in your suffering. Hopefully this surgery will take care of a lot of those symptoms.
With regards to contacting Dr. C about the compression at C3-C5 when turning the neck, I appreciate you doing it because I am interested in what his assessment is. I thought about it over the weekend and assume that it may be somewhat normal to see in imaging with dynamic postures. When I took my scans and turned my head left and right it was to an exaggerated position. I never turn my head that far, maybe briefly when driving. I assume that you too turned your neck as far as possible during that part of the scan. Flexing the SCM and at the same time dragging the IJV in that direction like the video KoolDude shared.
I also took the first available date knowing that I had a lot of travel plans soon after the surgery and would have to return to work. While I felt good coming out of surgery, I pretty much stayed inside a hotel room for a week watching TV and sleeping a lot. You are lucky that you can go home and rest in your own setting. I hope you have a remote or desk job, because you will get tired fast and headaches will set in later in the day. Almost a month later and I am still in recovery mode with swelling, but I had C1 shaved which requires more damage internally. Not sure if you are doing the C1 shave, so you may do better recovery wise.
Your crazy, you won’t be able to take the train. The hospital is going to require someone to pick you up and drive you to a hotel or home. You could probably make the trip home if you really don’t want to go to a hotel. Just get comfy in the car and tell the driver to be easy on the brakes.
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Heard back from Dr. Costantino: " I need to review that… You bring up a potentially important consideration. Let me investigate a bit and we should talk again well before the surgery date." Soooo yeah, thanks for saying something and I’ll continue to report back! I agree that the neck position for the MRV was extreme in a way that I don’t experience in regular life, but I’m assuming it’s just an extreme version of something that’s happening by degrees as you turn (though I have done neck adjustments in the recent past, before my diagnosis, which Dr. C was horrified about—though overall they helped me feel better). My first CT scan also said my compression was the worst in neutral, and I noted that the radiologist placed my head carefully for that scan, possibly putting it in a more tucked-chin posture that emphasized the compression.
I do have a lot of sympathy for folks who have to travel much further! The same is true of endo surgeries, and I feel lucky to be in NYC for both. I am doing the C1 shave, so it’s helpful to hear about your timeline.
That’s what I thought, but it’s helpful to hear you say it, thanks!!
Thank you again, all!!
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