Before and after CTV images: bilateral removal & C1 decompression surgery

General
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Hi all,
I wanted to share the before and after CTV images from JC’s surgery.
Before CTV: September 2024 (more skeletal looking images)
Surgery: December 2024
After CTV: March 2025 (more vessel like images)

I would love to hear your thoughts on the images. The left side was the always worse, and the surgeon (Dr. Kamran) indicated he could not remove the styloid any closer to the skull base without causing lasting nerve damage. JC already has a lot of post-op nerve stuff, so I guess it’s good he didn’t remove more? It means there is a little more styloid left, and if you look at one of the photos, it looks like there is a small chance there is still a little compression (likely in chin-tuck). This is the worst angle that I could find, because at other angles it looks like the IJV is completely decompressed. To me, it looks like both IJVs have a plumpness to them, before they were completely pinched and now you can see definition in both.

I was hoping the post-op CTV would go further down to show more of the hyoid, but from what I can see, everything looks okay and the surgeon got the calcifications. Again, if anyone has thoughts, I’d love to hear them. At some point in the near future I’ll go back to the other loooooong thread and do a full update.

Before L side
Before L side624×281 242 KB

After L side
After L side615×336 312 KB

after L side 2
after L side 2624×230 199 KB

Before R side
Before R side624×241 281 KB

After R side
After R side624×293 244 KB

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Hi Val, may I ask what country are you from and how long you were required to stay in turkey for the op?
thisis something I am considering.

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Howdy, we’re from Canada. Dr. Kamran suggested ~7-10 days. We opted to stay much longer, 4 weeks post-surgery. There were a few factors:

  1. It is a 12 hour flight and 10 hour time change
  2. Access to healthcare in Canada is scarce, and my husband wanted to wait out potential post-op complications
  3. He has several health issues and we knew that his recovery may be harder than it is for others

I’ve heard of several people from the UK who only stay 7-12 days and have no issues flying home.

I have been keeping track of JC’s experience on another thread. It includes the breakdown of pricing, where we stayed, and what it was like to have surgery in another country: A Canadian's Journey: VES Surgery in Türkiye Dec. 10 - #102 by Isaiah_40_31

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Very nice improvement, @Val7426! Thank you for sharing the images. I hope JC is continuing to make gains & notice positive improvements. How is his jaw i.e. can he open it any further now & has he had any reduction in his FBS symptoms? How about his physical endurance i.e. ability to be up & about?

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I’m very curious to hear your thoughts on the left side, do you see signs of a lingering compression? As you can imagine, I have 1,000,000 screenshots so I can upload more if this isn’t a good angle.

Truthfully. It’s a mixed bag, and each day is different.

Mouth opening: no gains. A dental surgeon wasn’t sure if it is joint trauma from the surgery and will improve with time, or if it is permanent.
First Bite: Still as bad, no improvement. The dental surgeon said he’d never seen anything like it before (wonderful…)
Endurance: this is tricky to answer. Because he’s been so sick for so long, every action has a reaction. Attempting to strengthen one area causes referral pain elsewhere. It seems every time he makes gains, something gets injured and then he slides backwards because it’s hard to retain newly formed muscle. This is going to be very slow going and I work to keep him motivated to get up and moving at least a few times throughout the day.

Some of his vascular symptoms have come back; pressure, headaches, vision, etc. etc., but after seeing the CTV, I’m not entirely convinced they are vascular symptoms. His bloodwork came back with epically high hemoglobin and hemocrit, and a previous CTV noted polycythemia in the brain (increased red blood cells). Polycythemia can cause a lot of these symptoms, and the doctor recommended that he try donating blood and over time that might help. It’s an interesting suggestion so he’s signed up to save a life this Saturday.

Right now he’s focused on calming the nervous system. He’s had so many appointments where there are manipulations, poking, prodding, needles, that he is just fried at the moment. He’s got a couple more appointments lined up, but then he’s planning to take a break and let his nervous system calm down for a few weeks.

A lot of this is likely caused by the potential CCI, longstanding TMJ, and of course his diagnosis of long Covid. I always want to caution others that JC was already a mess when he went into surgery, so his progression through recovery isn’t that of someone who only had ES/VES.

This makes it all sound entirely negative. And while it’s not overwhelmingly positive, he is making strides and it’s going to take several more months of putting in hard work. The surgery needed to happen in order for him to have the opportunity to get better.

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@Val7426 - I LOVE your optimism & realism. Those will be key to helping JC get as well as he can.

I did notice a bit of compression in the second “decompressed” image, but I didn’t want to say anything if he’s doing fine as there is no point in creating false concern. What I don’t know is if it’s compressed enough to be causing the symptoms that have come back especially if it’s only when his head is in a chin tuck position.

I’m very sorry about the jaw stiffness & the FBS. I’m wondering if his glossopharyngeal nerve has somehow gotten compressed by something over the course of the surgery or if there’s scar tissue or something irritating it. If it goes on as it is for much longer, it might be worthwhile getting a FIESTA MRI to look to for entrapment.

Is there any type of PT that could help his jaw mobility increase? I know you leave no stone unturned when trying to find solutions to help with his recovery.

I vaguely recall you mentioning JC possibly having polycythemia. Is there a known cause for that? I hope that donating blood will help reduce the potentially related symptoms very quickly. It makes sense his hematocrit would be high w/ too many red blood cells. Please keep us updated as you have time. I know your hands are pretty full with all you’re doing to help & encourage him.

:hugs: :folded_hands:

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The compression does look better than before surgery, not fully re-open maybe on the left though. It’s so hard to know what’s causing what with his other medical conditions, it’s good that you can see positives in this very slow process… :folded_hands: :hugs:

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@Val7426 - I was just perusing YouTube for some neck exercises & came across this site: Jawline Exercises: 5 Moves for Definition

I’m wondering if exercises 3 & 4 could be helpful for JC in strengthening what’s left of his digastric muscles under his jaw & possibly increasing jaw joint mobility. Of course he would do these at the most minimal level to start, & hopefully they wouldn’t increase pain but would help with his current limitations.

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Thanks Jules, that’s also what I thought. Much better than before but not fully open. As Isaiah points out, it depends if that amount of compression is causing symptoms. Hard to say, because his symptoms are bilateral or centred, which to me suggested something more centralized/systemic.

Today was a good day. We went for two walks and he’s been up most of the day. Shall see what tomorrow brings.

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Thanks! I showed him the exercises. He does something similar to #3 already. He also has been trying to hum more because apparently it can help settle the nervous system (kind of like a cat purring). It’s our understanding there is no digastric left and it was completely resected.

Now that we have the CTV we’re going to see about a follow up appointment with Dr. Kamran. Ask some questions about the nerve pain, mouth opening (exactly which muscles did he cut), and ask him to review the scan. I don’t think he’ll have much to offer tbh, he’ll say surgically everything looks good, but I think it’s always good for them to know the progress a patient is making.

I looked into your suggestion for a FIESTA MRI but it doesn’t look like we have one here. Hopefully nothing is entrapped and with more time the nerves will settle :crossed_fingers: he’s coming off the Lyrica now and depending on how that goes he’s going to trial Amytryptiline.

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Besides the FIESTA MRI there is also a CISS scan which does the same thing as the FIESTA. Perhaps CISS scans exist in CA?

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Hope that Dr Kamran can give you a bit more info about the digastric muscle & what to expect with the mouth opening at least…I’ve heard about the humming, I think someone’s mentioned it on here, will be interested to hear if that helps too.
I think you’re an amazing wife, you’re fighting for his health so much & searching so hard for ways to help him! You must be incredibly patient! Glad that you had a good day yesterday :hugs:

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Following up on the MRI. So my boss’s son-in-law has his PhD in imaging and did his dissertation on MRI and spinal something-or-other. I asked a favour to find out if we had any machine in BC that can do a FIESTA and his answer was surprising (to me).

“Yes, FIESTA and CISS are two types of MRI techniques that can be run on most MRI scanners, although the different manufacturers use different trade names for the same technique (for ex. Phillips calls FIESTA ““TrueFISP””). Acronyms are a nightmare in MRI!”

This was alluded to in your URL, but it wasn’t clear to me that nearly all modern scanners have the capability and it’s simply a setting. I thought it was dependent on the model of the scanner. What might be the barrier for those of us calling to check is that the booking clerks aren’t familiar with the acronym or setting. I know someone else from the US phoned a lot of places and got the runaround.

So now I know JC can get a referral to any hospital, but I was warned the waitlist for a non-urgent MRI may be ~14 months.

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That’s super interesting information, @Val7426. How great that you were able to get a knowledgeable contact through your boss!

When I first heard about FIESTA MRIs, I also thought it was a specialized MRI machine but someone on this forum mentioned it’s a program not the machine itself, but the program is expensive so not many MRI facilities have it. Hopefully as time passes & technology continues to improve, that type of MRI will be more widely available.

I’m sorry there may be such a long wait for the scan, but it would still be worthwhile getting on the wait list in case JC’s symptoms don’t calm down more as time passes.

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I got a 3dCiss MRI. My primary care physician is great and ordered one for me upon request using my specific words Fiesta-C or 3dCiss.. (Adam Harker at IU for those of you in Indiana) . He put the words in the note section of the order.

However, because we were targeting this as a stroke issue he only ordered the head MRI. I think he would have had a hard time getting neck approved since I had one a few months earlier without 3d ciss. This one was done because I felt like Covid might have given me a stroke because something weird went on.
Here is the report. I did ask the technician if they did 3dciss and she said yes but it is not mentioned anywhere in report. But note that I can’t use MRI contrast so you may get a better report than I did.

INDICATION: Tinnitues, dizziness, brain fog, hx of lacunar CVA,
concern for new CVA; tinnitues, dizzines, brain fog, hx of lacunar
CVA, Concern for new CVA. Dx EAGLES SYNDROME, COMMENT ON CRANIAL
NERVES AND VESSELS AROUND ELONGATED STYLOID PROCESS. TECHNIQUE: MR imaging of the brain was obtained without IV contrast.
Images were obtained in multiple planes.
FINDINGS:
There is no acute diffusion restriction. No acute lacunar infarct.
Severe chronic ischemic changes are noted in the subcortical and deep
hemispheric white matter extending into the basal ganglia remote
lacunar ischemic changes in the thalami bilaterally as well as
chronic changes in the brainstem. No focal mass lesion. Report
The styloid processes are not optimally seen. No extrinsic mass
effect on the lower cranial nerves. The jugular fossa as well as the
ninth 10th and 11th cranial nerve does not show any extrinsic mass
effect. There is stable central susceptibility in the basal ganglia
related to chronic hypertensive microangiopathy. No interval change.
IMPRESSION:

  1. Severe chronic changes with chronic lacunar infarct unchanged
    from previous study. There is no extrinsic mass effect on the lower
    cranial nerves. No acute findings.
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Good to hear from you @JugularEagle! I’m glad you were able to get the CISS MRI w/o contrast. Was the information you received helpful for you?

Have you had a consult with any of the ES surgeons you were interested in since you were last here?

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I am back to trying to deal with this. I mentally could not deal with one more clueless Doctor. At least I have a primary care physician who does try to help and some of you all here don’t even have that! Interestingly, Elon Musk’s Grok program does a better job of spotting things than some of the surgeons I have been to. It will also help you write letters to doctors and appeals for insurance.

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I’ve forgotten, @JugularEagle, are you able to travel out of your state to see one of the vascular specialists or do you need to stay in IN?

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I will have to convince insurance to let me go out of state. I doubt I am going to trust a young Doctor that someone else here mentioned even if he does the Vascular procedure. I am going to call Campbell’s office on Monday to see if he does it. I am leaning towards Nakaji or Constantino.

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