Very happy to hear from you. Wishing you a speedy recovery. Did you also have a C1 shave?
You have been in my prayers, I think Dr. Aghayev even posted a short video of your surgery in FB on 23 July, I immediately assumed it was you in there. I am also highly considering Dr. Aghayev if I decide for surgery! Currently still trying to figure it out if it is just ES I am dealing with!
Yes that was likely me. Dr Aghayev did take off “a bit” of C1 but he does not seem to like to take out the entire C1 transverse process, only a small portion of it.
I have tons of questions for you, but I will let you rest for now!
And will be getting back to you later!
So glad that your surgery went well and that you can eat now! Good that your neck pain has gone, I hope that you can keep the surgical pain under control…Take care of yourself 
What excellent news, @Bowser!! I’m so glad your surgery went well & that your gastroparesis problem resolved so immediately after surgery. You’ve set a realistic timeline for the surgery pain to slowly go away. Please remember that pain can come & go as you recover so don’t get upset when you’ve had some good days & suddenly, there’s pain again. It’s the nature of nerve healing. In the end, the good days win!! 
Thank you, too, for the reminder about the Waldock paper. I’m not sure I read it before but I will now.
Please keep us posted about how your healing is going.
Hi bowser Im indian as well amd from canada. Did left side jugular vein open up after surgery in istanbul? And how long did your recovery take ?
My right jugular vein appears to have opened up because my headache or head pressure symptoms which I had for years completely went away after surgery. I only had pain and gastroparesis from compression the left side.
My anatomy is weird because my right jugular vein is very large (therefore providing sufficient blood flow drainage from the brain) but there is ZERO flow in my left transverse sinus or left jugular. Probably a congenital abnormality.
It’s good to hear you’re doing very well, @Bowser. I hope the gastroparesis has also stopped being such a problem for you.
Hiya Bowser, long time. How did you find out your left IJV was open but wasn’t flowing? Did Dr. K discover that in surgery, or did you have a follow up test?
I’m trying to find someone who can do an ultrasound of JC’s IJVs and measure the post-surgical flow rate, but so far every clinic has said no. I’m curious how you found out. JC’s having a lot of postural head pressure and dizziness, and I’m wondering if he’s having flow disfunction.
Hope all is going well, that the gastroperisis has stayed away and you’re getting to enjoy all the food.
One of the problems is protocol. I had a tech willing to experiment on me with dynamic. She was finding out things that I could see as we did it but when it got sent back to radiologist they jettisoned the info.
I was able to get an order for a transcranial Doppler but I am struggling to find a place to do it outpatient . Illinois and Ohio have places for those of you near there
Try asking an AI program. Grok gave me possibilities for TCD and numbers to call. I suspect it will not help because central Indiana seems to have a problem with this test on outpatient basis but northern Indiana seems to have it available.
Thanks for the information. I’ve heard it’s not too difficult with Doppler ultrasound but it seems no one here is familiar with the protocol. The condition and surgery are both so rare. I’ve sent out a few more emails and hopefully someone will nibble. It’s $325 per side so we need to find someone who is confident and knows what they’re doing.
Oh, @Val7426, I’m so sorry to hear JC is struggling w/ head pressure again. When you say it’s postural, in what head/neck positions does the pressure seem to increase? I’m also very sorry you’re hitting dead ends when just trying to get an ultrasound to measure blood flow gradients. I know Dr. Pereira in Ontario has helped some of our members, even some outside of that province. You could try contacting his office. He’s a vascular specialist & very familiar w/ ES.
https://unityhealth.to/physician-directory/dr-vitor-mendes-pereira/
Thanks @Isaiah_40_31. We’re meeting with our doctor next week as a result of Abhullat’s recommendation to seek a referral to a vascular specialist. We live in the same city and have been sharing a lot of names and resources. Grateful this site was able to connect us.
It’s better when JC lays down, not 100% gone, but better. However, when he stands it’s crushing pain in the base of his skull, headache, dizziness, and it feels like pressure building in his head. When he lays down it goes away. The other day he said it felt like his head “was in a microwave” again, which is the first time since surgery.
My brain is equally divided between thinking it’s IJV flow dysfunction, CCI or a CSF leak. I’d be surprised if it was the latter only because it should have come up sooner after surgery, not 4 months later.
Unfortunately everything is trending in the wrong direction. His nervous system is fried so that doesn’t help with coping. He’s got a bunch of appointments coming up so he has to pace himself otherwise he’ll have a complete relapse and crash. But fingers cross in the chaos we find some answers or avenues to explore.
Holy moly, Dr. Pereira has an impressive CV. Maybe I will email his office…
Pain etc when standing is more common with CSF leaks rather than IJV compression, that would be more likely to cause worse symptoms when laying flat, like you say, it’s strange that this has happened 4 months after surgery…I’m sorry that he’s having worse symptoms again, really hard for you both, sending you hugs 
Thanks, Jules. Even prior to surgery JC had extreme head pressure/headaches when he stood or walked, and it would build as the day went on. I know that’s not usually the case, but he’s special in most ways (!). It went away after surgery which was amazing, we went for a couple 5km walks and he was fatigued but no microwave feeling.
I also forgot to mention that he’s been told that he should get tested for Ehlers-Danlos syndrome. There is a question of whether laxity (CCI) could be causing his ‘instability’ or whether is it hypermobility (EDS). This recommendation came from the medical director of a pain clinic where he’s been going for his first-bite botox shots (which are now discontinued as they aren’t working).
There’s no doubt he needed the surgery. JC was lucky enough to have 3 ENT surgeons and a neurosurgeon confirm his Eagle Syndrome diagnosis before he had the procedure. There wasn’t much room to doubt the styloids were causing him issues. But the C1 surgery has led to some other and unexpected issues. If he could get past the FBS or head pressure, or headaches… just one thing… it would make his days so much easier. One day at a time, and one foot in front of the other. We’ll get there.
Hi I cannot contribute to anything medical or provide any useful opinione. But I would like to say that I am in awe of your dedication and loyalty to your partner. You both have great strength after going through what you have. I am really down about my PT, and have at times had very bad thoughts. But compared to what you and your husband are going through I think I have it a lot easier. I wish I had your strength and determination.
Hey Mark, that’s very generous of you to say. I’m sure in real life we present as an absolute disaster. JC asks if I think he will get better after so long, and you know, I really think he can/will. I’m not a person of faith, but I hold a lot of hope, for everyone on this site.
It’s doubly hard when you don’t have someone to advocate for you, and when you have to deal with your illness while searching for someone who believes you.
Pulsatile tinnitus is your biggest complaint? I’m not diminishing, PT can drive people to insanity. JC’s PT was resolved with surgery, but that’s not always the case. I have spoken with people whose PT continued after the decompression. Remind me, what was Dr. Axon’s view on the surgery?
I believe Dr. Hui, Dr. Patsalides, and Dr. Amans, all in the USA, do work with the veins and PT. Maybe one of them could do a consult and give you an opinion?
This post is a little old, but VDM always did their homework and they recommended this video. Maybe it gives you a hint? Pulsatile tinnitus, Dr Athos Patsalides presentation
@Val7426 - Since the glossopharyngeal nerve is the basis for First Bite Syndrome, I’m wondering if it somehow got tangled up in other soft tissues or was “manhandled” during surgery which is why it’s still causing so much problem for JC. If he can get the FIESTA/CISS MRI I mentioned, & have the GPN included, perhaps that would help unravel why his FBS isn’t improving & would show if anything could be done to help it recover.
Ohhhh I’m trying!! It’s about a 14 month waitlist for a non-urgent MRI. We think it’s critically important, but the system disagrees.