I have my consultation appointment with Dr. Constantino next month, and I know he will direct me at that point but am just trying to anticipate ahead of time if I am going to need additional/different imaging done than what I already have.
The most definitively diagnostic procedure I’ve had has been a venomous manometry and arteriography. I also have cervical and cranial MRVs, MRAs, MRIs, and x-ray (static) in flexion and extension. In anyone’s experience, is a CTV/CTA still needed if I’ve had the veno/arterio? Additionally, I am concerned about CCI and plan to ask about it. Dynamic movement imaging are the only ones that can really tell if that’s present, is that right?
Also in others’ experience – approximate time between consultation and any procedure? Just for managing my own expectations.
I’ve attached some images from the plethora I’ve gotten over the past 6 months, just in case anyone has any thoughts or insight to share image-wise. I really don’t know which images are particularly helpful/enlightening so I just picked some xrays & the mris at random, you can give it to me straight if I chose wrong and posted a whole lot of nothing useful lol. I just don’t know how to read these and feel in the lurch about what I’m seeing. I’m symptomatically worse than when these were done (ranging from March - April I think these are?) hence why I am worried instability is involved, the progression/worsening nature seems unusual according to my ns.
@squidalltheway - I’m very happy to learn you have gotten an appt w/ Dr. Costantino next month. The timeline from initial consult to surgery will depend somewhat on whether he wants additional imaging. You could try calling his office to see if they can give you an idea whether there’s other imaging he would want or prefer. Once you have your initial consult, & imaging is sorted out, it’ll possibly be another couple of months before surgery, but it could be less than that. Make sure to request to be put on his surgery cancellation list when you set up your surgery date.
I’m sorry but reading MRIs is not my forté, so I have no comments on your MRI images. I only have basic knowledge of structures in sagittal & anterior/posterior images of CT scans, & axial slices at the level of C1. I also don’t have knowledge of what CCI/AAI looks like in imaging, but I know that an upright MRI w/ a particular neck position protocol to diagnose CCI/AAI is what’s most helpful.
I annotated what I see in one of the x-ray images you posted which may or may not be helpful. You have lost the lordotic curve in your cervical spine which is the case with many of us. That can serve to bring the styloids closer to nerves & blood vessels in the neck. Restoring the curve is possible w/ gentle PT exercises but it takes patience & time. Here’s a link to a post w/ lots of good information to help with that though sometimes it can be better to wait to begin until after the styloids & IJV compression have been dealt with.
I don’t know either if he’ll want more imaging, like @Isaiah_40_31 says we’re not used to looking at MRIs & they don’t show the styloid processes… A CT venogram is best to see the IJVs and compression, but you’ve been diagnosed with that already, so presumably however this was spotted on imaging was enough?
If you think you might have CCI, a quick test was suggested by one of our members , @PatientD:
‘On instability topic, here are my practical tests to check yourself. Look in mirror - is your head slightly tilted to one side, is one shoulder higher than the other, if so is the hip higher on one side than other (put hands on hips), is one leg slightly shorter than other - get friend or family to help - wear flat shoes - lie flat- have companion put your heels together. If one heel is slightly shorter than other they can see that & tell you. If you have many of these characteristics this may suggest you have instability issue. Our brains keep our eyes even with the horizon & will alter body below in order to do that.’
Symptoms can suddenly worsen, especially with Vascular ES- if there’s IJV compression the body can compensate for this with other veins taking over (collateral veins), but these get to a point where they’re not coping with relieving the pressure in the brain and so you can feel worse.
After a CTA of my daughters head and neck which were not ordered by Dr. Costantino but he did review, he had her get a balloon venogram and angiogram of her jugular veins. But I don’t know if that is a standard protocol or if it is on a case by case basis. He did see she had c1 compression bilaterally from the cta scans which prompted him to order the venogram and angiogram. She had that test in mid May. Reviewed the tests with Dr. C at the end of June and her surgery was scheduled the following day for October 19. We should have scheduled the test followup appt when we made the appt for the tests. Then it would not have taken until the end of June to go over them with Dr. C. That was our mistake. It only took a week to get the test report. Live and learn.
Thank you @Isaiah_40_31 for the annotations/resources!! Very helpful. Yes I definitely have that military neck problem and thank you @Jules for that info! Unfortunately it’s a “yes” to just about all of those questions. I have in the interim consulted a pain management clinician also versed in hypermobility and general joints and bones stuff and she is suggesting instabiltiy as well.
@Kmoore464 woooo how are you feeling post op? hope you are feeling well and that you’ve gotten relief @suenami21 ok so sounds like veno/angio was the way to go, I’m glad she’s on the schedule and also hoping she can get in as soon as possible! So seems like generally ~4 month waiting time from scheduling to surgery date. Helpful for managing my expectations, thank you. Yes hoping she can get in sooner and will be putting good vibes out there for great outcome/relief for her
@Kmoore464 - focus on the good days but expect some more down days. As has been noted, recovery from ES surgery, especially with vascular decompression, is non-linear. It may take a number of months for you to feel significant improvement, but I hope it happens for you sooner than later.
Sending hugs, it’s not an easy recovery and can take time, just be careful not to overdo things on the up days, and read reassuring posts on here on the down ones…like this discussion:
Thank you @Jules and @Isaiah_40_31 for your kind words. I’ve been taking a break for a bit to let it sink in that we have a surgery date and our research etc is hopefully over. Her date is still Oct 19 so we’re taking one day at a time. Keep up the wonderful work that you do on here because it truly is a lifeline for the many suffering from any form of compression. There is never a shortage of stories we can relate to and it gives hope when faith in a solution waivers. The latest is from @EagleinSEA success post. So glad you’re doing so well!!
@suenami21 Thank you, glad we can help, I would have never gotten my surgery if it wasn’t for this site! It was lovely to hear @EagleinSEA 's story, very encouraging!
Hi all, as an update I had my consultation. He confirmed I am “profoundly compressed”, and is also suspecting so is my spinal accessory nerve; he will be doing decompression surgery on my dominant side. (Interestingly both he + my previously-done arteriogram reported one side is more compressed than other but said was opposite side than the arterio reported. ??) Also that I have lax/floppy epiglottal ligaments now and that is causing the dreaded pulsing clicking when my heart beats. I don’t have a surgery date yet until we fight with insurance for auth. Most days it feels like I won’t; make it til whatever date it might be (November? December?). I’m suffering while awake and I suffer while I sleep (AKA can’t sleep) so just taking it minute by minute at this point. Grateful for everyone sharing their experiences, guidance, hope etc.
So glad you had your appointment and that you now have a path to follow. Fingers crossed for you for quick insurance authorization and a surgery date to follow.
@squidalltheway - We’ve had several members mention that their insurance companies have a patient advocate who was helpful with getting the approval they needed for out of network surgery. If there is no one like that working for your insurance company, there may be independent patient advocates that could help. I recall at least one person mentioning having to contact her state’s board of insurance to get the help she needed to get her insurance to approve her surgery. It’s rough that it can require so much work on the patient’s part to get the coverage needed for a major surgery but sadly that’s more the norm these days.
I’m so sorry for how miserable you are & hope that your symptoms will calm while you wait to get your surgery scheduled.
I really don’t know which images are particularly helpful/enlightening so I just picked some xrays & the mris at random, you can give it to me straight if I chose wrong and posted a whole lot of nothing useful lol. I just don’t know how to read these and feel in the lurch about what I’m seeing. I’m symptomatically worse than when these were done (ranging from March - April I think these are?) hence why I am worried instability is involved, the progression/worsening nature seems unusual according to my ns.
and thank you 
