Thank you for the update.
I’m in the same predicament.
I have a left styloid that is irritating structures but on the CTv, my right c1 process is compressing the IJ.
My c1 seems to be tilted. Right side higher, left lower.
The vascular eagle surgeon seems to charge an even higher premium than just plan ES surgery.
Yes it‘s a hard decision. If I would need to decide again, I’d go with the dominant side of the vein, means right. But as I didn’t had the second surgery this is just a gut feeling.
Big advantage here is that the insurance is taking over the surgery costs.
Wish you good luck with your decision! It’ll be the correct one
Do you have CCI ( cervical instability ) @Alice ?
I don’t think so.
I went to two different physio to assess and work on cc instability and strengthening. Really didn’t have much improvement.
I also don’t feel that my head is unstable or clunky?
I didn’t do the cci imaging.
But my c1 is definitely titled and rotated (from the CTv in Flexion) . I have a chronic head title/ rotation.
PT for neck issues can take a number of months & up to a year to help correct the problem(s). If you only had a few sessions, then that may be why you didn’t notice any improvement.
One year later I thought to give another update.
As written earlier, the second surgery also did not help to solve my problems.
On the one hand I am quite sure the jugular vein could be part of the problem, I am meanwhile open to investigate into other directions.
I had an appointment with an ENT this week to check on breathing via a DVT, cause I always suspected some bad breathing while I sleep. Although sleep apnea was ruled out, we found 2 major narrowings in my airway (see the picture below).
I went to them initially cause I stumbled upon UARS (Upper Airway Resistance Syndrome), and they pretty much confirmed that I have this (a real sleep study would be needed to fully prove it).
In general I think my problem is too less room in the neck area, cause it matches the JGV problems, and also my problems while swallowing.
So my next steps testing are:
I am quite sure that my problem is somehow sleep related meanwhile. My muscle tension increases that much over the night and the next morning I feel like I ran a marathon. The thing is I do not wake up very often.
Of course I am absolutely unsure about what in the end causes my very foggy and deezy feeling. But still important to test whatever is possible. Maybe somebody on this forum also gathered some experience in regards to UARS, I’d be very curious 
@Dersen I’m curious if anyone ever looked to dee if you have a tongue-tie? Having one impacts the development of your palate and airway. Check out https://thebreatheinstitute.com for more information.
Indeed I think I have kind of a tong tie. Unfortunately I forgot to ask about it when I saw that private doctor. It’s just so hard to remember things lately.
But if that hinders the development of the palate and the airway that would be an important indicator. Question would be if releasing it would now still be helpful, or if it’s kinda too late.
Thanks a lot for your response and the link, will definitely have a look. Very interesting!
I had a grade 4 (the highest score unfortunately) tie identified and released at age 54 and it has made a huge difference in breathing. But releasing the tie is only the first step in the process. You would need to do myofunctional therapy to teach the muscle of your tongue to do its job and the rest against your palate (the pressure of the tongue on the palate is how the palate develops in children). If there isn’t enough room for your tongue because your palate is too narrow you can expand your palate in a variety of ways working with a dentist or orthodontist who is an airway specialist. I was able to get 6 mm of expansion by using a device called crozats and then using Invisalign but there are many options. It is a process but my sleep is much improved and now I naturally breath through my nose instead of my mouth. My theory is that the tongue tie tension is why I developed elongated styloids. I can see by the image in your post that your jawline is underdeveloped which made me think tongue tie but that can also happen in the traditional and short sighted way of straightening teeth in children, removing a molar in each quadrant and then moving the teeth closer together…instant airway restriction.
I’m sorry that the surgery doesn’t seem to have helped, I hope that you can get some answers with what else is going on…maybe some of the dizziness & brain fog is tiredness if your brain isn’t getting enough oxygen while you sleep, even if you’re not aware of waking up?
Thanks again, very interesting. So happy for you that you were able to improve your sleep.
Did you also test some CPAP or other breathing machines?
I made some pictures and added my symptoms to chatgpt which assumed a tongue tie of grade 2 to 3. I know it’s not a medical analysis, but I think it’s worth mentioning in my next doctor’s appointment.
For now I definitely want to avoid further surgeries, at least as long I am 100% sure what is causing it. And the surgery the private doctor presented sounded very complex, like breaking the bones of the jaw and setting it a bit forward.
I definitely have also some problems speaking and swalling and wanted to take a look in training it. I somehow have the feeling of using too much (and the wrong) muscles at the bottom of my mouth.
Yes somehow that is also my assumption. In addition to that some teeth clenching resulting in high muscle tension, which I am not able to get rid of. Which is reducing the left space even more.
Very interesting. Definitely don’t start with a double jaw surgery, so much to try before that. The tongue-tie release is a pretty simple procedure but you want someone with experience. Also, it does no good to release the tongue without doing the myofunctional therapy. You might even try doing myofunctional therapy with your tongue as it is and see if you get meaningful improvement. I didn’t want to rely on a Cpap which is why I went this route. I hope you find some relief ! Let me know if you have any other questions that pop up.
Yesterday Dr. Centeno shared his experience + a study about obstructive sleep apnea and the effect on intracranial pressure + IJV connection which is very interesting: Reddit - The heart of the internet
@Dersen
Very interesting info, @komok. Thank you for posting the link. I only read the excerpt but it provides further confirmation about how dangerous sleep apnea is! Crazy how many people have it!
Thanks a lot, very interesting and makes totally sense to me.
Also my mother told me that as a child I indeed already had one treatment for a tongue tie - might be the treatment was not enough.
These days I already tried the INAP device which shall hinder the tongue to fall back. Unfortunately it did not help, and without using a nasal spray I cannot even use it. Guess thats caused by the upper bottleneck. The nasal stents I also already tried, but somehow I am producing a lot of mucus while wearing - which makes things worse again.
Next try will be a specific splint and getting into the tongue tie topic including myofunctional therapy.
@Dersen - I’m sorry you’re dealing w/ sleep apnea & tongue tie issues. I hope the splint & myofunctional therapy help both w/ the tongue tie & with breathing when you sleep.
