Not sure of all the details. I know he is using a balloon to inflate. I will be to sure to update with all the details shortly!!!
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This is why we repeatedly tell our members to see VERY EXPERIENCED ES surgeons. Certainly even with that, not everyone gets a great outcome but there is a much better chance of it as every surgeon learns as s(he) does surgery & are able to create more effective surgical techniques.
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Please explain where I misunderstood what a dynamic CT scan is. I want to convey correct information to our members. Thanks, @vdm.
Iâm glad to know about the joint motion aspect as well as the other things these CTs make visible.
I had read that too (about dynamic CT). But all the radiology labs I called said that it didnât exist.
Itâs not that it doesnât exist, simply itâs a fancy name for ârepeat the scan with patient holding the joint/neck in multiple positionsâ
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In my corner of the earth (northern NJ USA), it doesnât exist because they wonât do it. I asked. I called many radiology labs. I couldnât even find one who did MRV of the neck, only MRA. One place said that if I could hold off for a few weeks, theyâd develop protocol.
I guess thatâs rather fast turnaround? But Iâm judging by Canadian timelines.
More on testing-
it wouldnât have likely shown anything if I did wait those few weeks for a neck MRV. The neck MRA showed nothing, and I had a carotid issue.
The head MRV/MRA showed nothing either, and I clearly have low level elevated fluid and pressure.
I fought so hard to get these tests run while I was feeling so super terrible. Dr. A said that the chances of anything showing on an ultrasound (I was asking for that) were slim to none. I just had to go with my gut.
I asked him of course about the catheter, he said it was very invasive, a bit risky and also would offer me minimal data.
The thing was, Iâd already tested and retested everything else in the last two and a half decades. I had a hard time thinking of anything left that was untapped.
I was a steadfast researcher (no idea how Eagle escaped me). I had a large team of docs and practitioners on my case that Iâd gathered through the years.
It was hard to go into surgery only having the cranial non-contrast CT and cone beam CT. But the consensus from the 3 docs I saw was that it showed Eagle Syndrome (the 4th, Dr Costantino, said my scans were garbage and he saw nothing). I think he only actually saw the cone beam.
This is so hard though, the position this puts us all in.
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Then I have maybe a silly question: do you have a military neck/loss of cervical lordosis?
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The point of the additional testing (where I disagree with Annino a lot, as he said the same with me), is it can show additional compression that other images can not which would further help with whichever surgery is needed. The other surgeons (Costantino included) both pointed out my digastric muscle compression and the seriousness of my C1 transverse process. Iâm looking at most likely C1 shave if not a more serious surgery with a fusion. You have to follow up on all these Drs. No office is perfect.Hepworthâs is probably the worst at communication. Itâs part of the journey we all unfortunately have to navigate.
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Yes total lack of lordosis. See Connorâs recent comments in FB group on that. Not sure I can post them in here.
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Not sure about Connorâs investigation, but my suspicions have long been that military neck and Eagles syndrome have some correlation (not necessarily causation).
There was an article about people with military neck being prone to myofascial pain (I posted it somewhere on this forum).
Also I suspect there might be increased tension on the vertebral arteries thus leading to blood supply problems to the brainstem. It might be worth checking the hemodynamics.
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Yes I agree that Dr A only focuses on that stylohyoid area. However, itâs the one thing easiest to do that should come first, from everything Iâm reading and everyone Iâm talking to.
IF the routine CT showed anything, heâd have comment on that, likely limited though. But the answer would still be: we try this first. I already knew, one doc isnât likely to be expert in all of it, in a large picture. It does seem that Hepworth is closest to that, but who can get in there/travel there, and bop around while so sick, to different places and wait and wait. Itâs sadly not realistic. Similar with regard to Dr C; I had my visit with him on October 12th. He said heâd call in scans. Then I went into his billers office, biller said my hospitalization wouldnât be covered at all (only if I had Aetna out of state). He said my out of state exception would cover the Dr but not hospital, because they switched from nyc to a small Connecticut one. Suggested I wait till the new year and get on different insurance. I didnât have much comment but a wife-eyed stare. However, the new year passed two months later and no note in my chart that I was ever in the office. Three weeks after I saw him I started with strangulation episodes. So, itâs a calculated risk - waiting game. I just had to look at what was in front of me and realize that better might exist but that the best in front of me was going to do.
And man, I chose well. I was going downhill pretty fast. I couldnât turn my neck or bend down for the last few weeks before surgery, without my head swimming⌠couldnât sleep without crazy body revving.
Yes, these choices we have to make are difficult.
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@Thans - In the end, you were guided to the right surgeon by a series of negative events - inability to get additional imaging, lack of follow-up by Dr. C, & increase of horrific symptoms that mandated more immediate care.
As a Christian I believe that God guides our steps in mysterious ways that we may not understand in the moment but the outcome is wonderful!
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Interesting, I looked it up. A neck Doppler or otherwise inserted catheters equipped with pressure sensors would have the best chance of showing the hemodynamics.
These can highlight conditions within blood vessels, identifying factors such as stenosis or blockages. These measurements contribute to a comprehensive understanding of the circulatory systemâs dynamics and aid in diagnosing vascular conditions.
I think the Doppler has to be very pressured and high up to detect anything. Which is why some docs only use specific techs who know this and are experienced with it.
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Yes, i like that. Ty
Every part of it aligned, even though the journey was so hard.
Just to go back a little further, my family arranged a pretty last minute vacation to Canadian Rockies on a train. Two things resulted (besides a great trip). One was that Iâm that trip I realized I had a big problem with circulation. I had seen it on a prior long flight but now that I have more context, I can label it as a vascular issue (my legs on the train for several days were horrific). Second thing that happened was I had to reschedule my 6 month routine dental appt. Which doesnât sound like a big deal, right? I was annoyed as I live my dentist. Anyway, due to the reschedule, I had their new dentist who was the first person to utter the word Eagle Syndrome to me âI really think you have thisâ.
So yes, things were aligningâŚ
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Afaik the vertebrobasilar system and dynamics are best seen on catheter angiogram.
Here is the post where I speculated about being affected by the VBI:
Chances are, based on my understanding of anatomy in that area, tight muscles might cause temporary âsubclavian steal syndromeâ too.
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Yes, the choices are difficult and we have to do whatâs best for us. The healthcare system in general is extremely difficult to navigate, itâs not just Costantino, trust me. I found Hepworthâs office far worse at communicating. My own PC, screwed up on my medical clearance for my procedure next week with Patsalides. Iâm just stressing, itâs not isolated to one Drs office. I will most likely need a fusion after my surgery with Costantino. That is what I am navigating now. I am opting not to pursue Hepworth at this time for various reasons but he is still an option. I am very complex and I have to feel confident in my Dr. which is why I have not rushed into surgery as we all know by now. Iâm glad you are happy with your decision.
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