Hello everyone - I haven’t been on here for quite a while as I unfortunately find the site difficult to navigate and I didn’t have anything worthwhile to share. However I think this update may help some people as they try and work out what to do going forward and I would really appreciate some more advice too .
I discovered I had severe bilateral ijv compression in April 2025 in the USA. My styloids weren’t elongated but I have thoracic kyphosis (diagnosed recently) and there is not much room for everything. My c1 is tilted and angled up under my c0.
I returned to NZ where no one was able to help me and ended up being operated on in Australia by Dr’s Elliott and Rao in September 2025. I know it is recommended that you get more than one opinion but there’s only one team in Australasia that do the styloidectomy, C1 shave and ijv decompression. I was happy with the team and there is a lot of positivity about them online. It was interesting though that Dr Elliott initially said I didn’t need the surgery. I saw Dr Rao two days later who ordered more scans (ctv 4 head positions) which showed I had grade 4 compression and I was then scheduled for surgery by the team. I haven’t ever had a lot of symptoms - its mainly been horrendous tinnitus 24/7 requiring sleep meds through out the night, intermittent head pressure (not nearly as bad as a lot of people) and nocturnal head pain which was referred from my neck and was resolved with prolotherapy. It’s hard to compare your symptoms with other people’s but I feel I haven’t got as many as some but the lack of sleep has been my primary driver throughout as I am always exhausted and feel generally unwell. The surgeons were very pleased with my surgery and told me afterwards that it was a total mess from C1-C4, that I had collateral veins everywhere even in my muscles and dense fascia. After the surgery I had no improvement in my symptoms and I had a ctv scan at 10 weeks. The radiologist reported I had a persistent focal narrowing of the superior right ijv with a csa of 14mm2 increased from 6mm2 pre surgery - still a moderate/severe compression according to ChatGPT who I ask a lot of things these days! It was also reported that my left ijv was normal in calibre. Dr Rao the neurosurgeon looked at the images and said it was likely fibrotic scar tissue and a stent was initially mentioned as a possibility, then a balloon angioplasty as the interventional radiologist on the Australian team said a stent was too dangerous. I saw an interventional radiologist in New Zealand who agreed it would not be a good option and didn’t think I would get a good outcome from a balloon angioplasty either - he got me to have a Doppler Ultrasound which said everything was normal. So then I thought perhaps I could get a surgical revision of the scar tissue - everyone I contacted in New Zealand has said they can’t help and it hasn’t been offered as an option by the Australian team either. So I googled and there are apparently only a handful of surgeons who will do a scar tissue revision of ijv - Dr Kamran Aghayev, Dr Hepworth and Dr Constantino were the names. I know Dr Hepworth is insanely busy so I contacted Dr Aghayev and Dr Constantino last week. Dr Aghayev has an extremely efficient team - they replied the next day, I emailed my ctv to them and they replied the next day with a 5 minute video explaining my ctv as they went through it. Dr Aghayev looked at my operated side and showed the measurements etc as the scan played through - my ijv is fine at skullbase and then it is compressed by 2/3’s at my c1 - he says that not enough of the c1 was removed and that I require further surgery - no mention of scar tissue at all. He also said there is compression on my left hand side and he has offered surgery for that side too - this is all through his admin team - I am yet to have my telehealth with him. To be honest I don’t think I can afford it at the moment as the Australian surgery cost 40k so there’s no rush but I am very confused about my situation and the different opinions from the same imaging. ChatGPT says it might not help my tinnitus (not pulsatile) so that is a worry, but I can’t give up and at the same time Dr Aghayev is saying yes to more surgery which I gather he wouldn’t do lightly. Would really appreciate your thoughts as this has been a really tough two years .. also he has said he doesn’t require any more testing - I have never had pressure gradients done which everyone says is important - ChatGPT says that is because he can see from my ctv that my compression is significant so it doesn’t matter. I asked the interventional radiologist in NZ if he could do it for me and he said it was an unreliable test .. so lots of different opinions everywhere I turn
I’m so sorry that you’ve been through surgery with no improvement, especially having to travel and pay so much!
It’s a really tricky situation, and as we’re seeing more members with complicated medical conditions (like instability, Ehlers Danlos, other venous compression syndromes) it seems that even the most experienced doctors don’t always agree with treatment plans, & offer different surgical options. So it is a minefield, and I guess all you can really do is go with your gut instinct as to who you feel most comfortable and confident with? We have had members who have had surgery with the most experienced VES docs and have occasionally not had great outcomes so needed revision surgery or other treatments, there’s no one doctor who stands out as being 100% successful unfortunately- IJV compression and C1 shaving especially is a fairly new technique, so really the doctors are still learning… Some doctors are more conservative with how much of the C1 process they shave, Dr Aghayev does seem to remove more, but not all doctors agree with that…
A couple of points- tinnitus doesn’t always go with surgery, it does seem to be the one symptoms which comes up most as not being resolved.
The CT venogram with pressure manometry does show compression well, but is invasive & not without risk, so does need consideration with whether you have it anyway- not all the doctors require it, so maybe don’t worry that Dr Aghayev doesn’t?
If scar tissue is contributing to compression, some doctors do ensure all compression is removed and so will strip fascia etc to free the IJV during surgery, so if you do have a telehealth appointment then ask that question?
I’m sorry that I can’t give you a clear answer, maybe others can chip in with their thoughts, but sending you a hug and will pray that you find the right path
I am sorry you are going thru this. I also just starting the journey post surgery and still severe compression. And trying to decide where to go next, and the waiting game. But i do live in the US. You have to do a lot of travel. And the decisions for care we have to make are challenging.
Thanks Chrise! And that’s only the half of it - it all started December 2023 - this condition is a nightmare. Did you get the answers you wanted re your styloids and vascular involvement?
Thankyou and hello. Do you know what is causing your compression? Who have you approached? Yes you are lucky to be in the US although they are all so busy. Dr Aghayev’s team is impressive . I emailed and a week later I have the video explaining my ctv to me and showing what is wrong, Telehealth scheduled for this Tuesday and only a 15 day wait for surgery. Unfortunately I can’t make that timeframe work but I’m impressed with the efficiency.
I am going to look into the provider you mentioned. My most recent ct says: Rt significantly compressed by fascial planes as well as right sided process and by right transverse process of C1. Left significant narrowing of ijv secondary to compression by left transverse process of C1. Also, compression with inferior left ijv at the level of the carotid bifurcation bilaterally adjacent vessels. I am told next step is stents and I have a different provider wanting to do another venogram/balloon. I feel I need other opinions.
Glad you can get a third opinion. Do you mind me asking who did your surgery and who is recommending stents and balloon angioplasty? Have you had success with ballooning before? There seems to be some success with stents in the right place but still controversy. I’ve contacted Dr Constantino for a second opinion but I’m not sure how long the wait is for a consult. Good luck with Dr A - let me know what he says. I’ve spoken with two of his patients that think he is amazing.
Surgery with dr nakaji, i was told prior to my surgeries i may need stents. This recent ordered venogram with dr mehta he said he might try to balloon but would probably not work. I may not proceed with this venogram, i don’t understand the benefit
I have always been leary of stent placement, so i don’t know about jumping in to that. I would need to have great faith in that provider to proceed. But the symptoms get overwhelming, and difficult to make good choices
I hear you - we’re in such a hurry to get better Dr A’s team is very quick and efficient - it’s just getting there and the cost that is stopping me. . plus I am nervous of bilateral surgery and how I will sleep as I struggle so much now but there are no other options…. I want 20 more years with my family
also he has said he doesn’t require any more testing - I have never had pressure gradients done which everyone says is important - ChatGPT says that is because he can see from my ctv that my compression is significant so it doesn’t matter. I asked the interventional radiologist in NZ if he could do it for me and he said it was an unreliable test .. so lots of different opinions everywhere I turn
