I’m guessing that by removing the styloid close to the skull base, it gives more space in the neck to shift the IJV slightly.
3 Likes
@SCJeff If you decide to have Dr. Osborne perform your surgery, one practical thing to know in advance is that I was not told until my appointment the day before surgery that, in my case, Dr. Osborne’s office required the postoperative prescriptions to be picked up from Biomed in LA, near Beverly Hills, before surgery. I was not given the option of using a nearby pharmacy. These were routine antibiotics and Vicodin. My brother is a pharmacist and asked why they could not be filled locally, but the explanation we were given was that those medications are not always available.
Biomed told us they would call when the prescriptions were ready, but by about 3:30 p.m. we still had not heard anything, so we drove over. We arrived around 5 p.m., and they still were not ready, so it was fortunate we headed over rather than waiting for the call. I also could not use my insurance at Biomed, whereas I could have used it at the CVS directly across the street. Since you are traveling from out of town, I would ask exactly how they are handling prescriptions now so you can plan for it.
4 Likes
Just in case it’s helpful with funding the surgery, here’s a link to some info about that:
2 Likes
I needed a revision of my left styloidectomy, as the styloid was left much longer than “advertised”, & to have my IJV decompressed. Dr. Hepworth did my surgery w/o being sure he wouldn’t need to shave C1 a bit because my C1 is shifted to the left. Post op he told me he was able to relocate the IJV into a little groove where it normally sits once my styloid was cut off above C1 so no C1 shave was necessary.
My early compression symptoms were more typical - roaring tinnitus (not pulsatile), brain fog, vertigo, but I also had significant hearing loss in my left ear. After my left styloidectomy, the brain fog lifted but hearing loss, tinnitus & intermittent vertigo remained. I was a long distance runner at the time, & my ENT told me many times if I stopped running, those symptoms would go away. He may have been correct, but I suspect they would have just been more minimal & not absent. If I would have recognized what those symptoms pointed to back in 2015 when they started, I could have seen Dr. Hepworth back then, & more than likely, it would have saved my hearing. Unfortunately, I was too new to ES & didn’t recognize them for what they were. A surgery in 2019 to, try to save my hearing, left me w/ a hole in my skull base & permanent tinnitus & hearing loss, however, the surgery Dr. Hepworth did has stopped the progression of the hearing loss so I’m happy about that.
4 Likes
Ask away @SCJeff, that’s what we are all about. Dr. Nakaji did my surgeries and I did have all the VES symptoms and testing that showed a significant pressure gradient across the stenoses. I have no signs or symptoms of cervical instability from the C1 resections. I also don’t think it’s all that new. Dr. Nakaji has been doing them since his days at Barrow Neurosurgical which was many years ago. I hope that helps.
4 Likes
I can share that I had styloidectomy only in 2020. That surgeon believed that it would automatically decompress anything in the neck. I didn’t know any better to push for more. I will say the imaging done pre-op back then was looked at again in Jan 2026 and it did show evidence of IJV compression. I struggled for 6 years with worsening of ear pain, headaches and hearing loss and new tinnitus. New and better imaging (CTV) was obtained and in April 2026 I had IJV decompression and C1 shave. My headaches have completely gone away and hearing improved. My neck also doesn’t lock up at C2 anymore and seems to move smoother. I will share on left side my IJV was shrink wrapped all the way down to my clavicle with adhesions from what doc called lymph node garbage. I had long term neck swelling and likely inflammation creating an environment for all this to occur. The doctor believes an illness triggered the inflammation. I do have hEDS and MCAS. They now believe the drivers of the inflammation is the MCAS so I am now treating it. I encourage you to get a 2nd opinion from a doc that looks at vascular compression and weigh your options. I can tell you first hand I wish I could have avoided this 2nd surgery 6 years later.
4 Likes
@SCJeff i just read your post, I had missed it when it came through. It’s absolutely heartbreaking to read. It’s appalling how we are at the mercy of people that don’t know what they are talking about. The way you were repeatedly dismissed by “experts”, ugh!!! I hate what people have to go through. I’m so glad you started putting two and two together and got to the bottom of this. I wanted to share that I consulted with vascular doctors before settling with just the bilateral styloidectomies (Dr. Nakaji and Dr. Aghayev in Turkey). They were both super easy to get consults with. And super helpful in getting decisions made. Dr. Aghayev said he would do c-1 shave as a precautionary but wasn’t sure it was necessary. Dr. Nakaji basically agreed with Dr. Osborne that a styloidectomy should release my ijv compression. Dr. Nakaji didn’t charge anything to review my records and give me that info. Dr. Aghayev charged $250 I think. Money very well spent as he is so thorough and went through my ct and the process he would do so very thoroughly. He said my left one was the biggest fattest one he had ever seen, I think yours rival mine and yours are on both sides!!! My right side was huge by all standards but still nothing like my left. What I am trying to get to is: I think you would do well to have Dr. Aghayev review your scans with you and offer his expertise. Obviously if all you end up needing is the styloidectomy I would totally and completely recommend Dr. Osborne. I just think Dr. Aghayev will see you quickly and give good insight to your decision process from a decompression standpoint. Regarding whether to do one or both, if Dr. Osborne thinks doing both at once is doable and good, I would go with that. It’s so worth it to be done. And it’s not always easy to tell which symptoms are resolved by which side. For me vagus nerve compression ended up being way more symptomatic than my jugular. I say, if the doctor thinks you can handle both surgeries then be done with them!!! I hope this helps, I can’t believe all the years you spent suffering with this - so close to a diagnoses with no one willing to help!
3 Likes
Thank you so much Lisa, it’s certainly been challenging to live with so much discomfort and gas lighting. To this day, most people still say ‘You’re too young to be having these kind of problems’. I’m not sure why people treat me this way, but it’s made me all the more compassionate and accepting of others.
It’s very encouraging to hear your compression was solved by styloidectomy alone with Dr. Osborne! Did you have vascular symptoms from your eagle’s? And does Dr. Osborne cut the styloid back all the way to skull so that IJV compression against C1 is no longer possible? Despite my compression I do not have vascular symptoms because my collateral, facial, and vertebral veins have grown extensively and helped me (pic annotated by @Filya). Somehow I have been competing at swimming and running races at a very high level for many years now, in fact exercise is the only time I feel better and I’ve won many races including a couple half marathons and shorter races, so I’m thankful for my health despite the eagle’s pain. My theory is that because I do not have vascular symptoms, styloidecomty alone would solve most of my problems, but I am now consulting Dr. Liu for a 2nd opinion. I would be open to C1 shave and more advanced decompression on right side if necessary. Styloidectomy alone on left side should be sufficient.
Dr. Osborne approved my surgeries a few days ago and gave me the option to schedule 1 or both sides. I haven’t paid the deposit yet because I want to hear back from Dr. Liu, his nurse practitioner is expediting my case so I can decide before committing to Dr. Osborne. On your recommendation I just sent a contact request to Dr. Aghayev and would like his opinion also.
3 Likes
I assume that developed venous collaterals (vertebral veins) are a consequence of intense physical exercise. Therefore, when I was 17, physical exercise was much easier to tolerate. At that time, I engaged in intense physical exercise (but I often had nosebleeds — once a week, consistently, or even twice), and the symptoms weren’t as severe as they are now. When a person engages in sports and trains intensely, their blood pressure rises, and due to the increased blood pressure, the thin veins dilate and turn into venous collaterals. When a person stops doing sports and training, the venous collaterals become thin, and the symptoms worsen.
But now there’s another dilemma. Right now, the tone of the neck muscles doesn’t allow for intense physical activity and starting to train. Because when you begin to do physical exercises, your neck muscles tense up and start compressing the vertebral veins, and you feel a worsening of your symptoms. This stage is hard to get through and overcome. And to develop collateral veins, you’ll need intense physical training for about 3 months or more, and that will be difficult given the symptoms.
2 Likes
One of the vascular ES doctors said that some people compensate very well (with collateral veins) so don’t get the vascular symptoms, but they can suddenly get to the point where the body can’t compensate any more & they start to feel ill… so it’s good you are getting a consultation with Dr Lui.
4 Likes
@SCJeff @Jules. Just wanted to add to your comment Jules on some people compensating very well with collateral veins. I fit into this category. I have 2 very large collateral veins (I’m going for the world record 
especially my right) they appear to be compensating for my fettuccini-like internal jugulars at the C1 level as I don’t have symptoms that can be purely attributed to a vascular origin.
However there is a downfall of overelying on developed venous collaterals in the neck due to the fact that collateral veins don’t have valves like the internal jugular veins. Of a night time in a horizontal position a normal person relies on functioning internal jugular veins and not the collaterals.
So for someone who has internal jugular vein compression you are more susceptible to retrograde venous flow via the venous collateral system and slow venous velocities in the brain during the night time which may lead to a Transient Ischemic Attack (TIA) or even worse an Acute Ischemic Stroke. This was the case for myself 11 years ago at the age of 52 years of age when I had two TIA (no comorbidities) in the middle of the night. I’ve been on aspirin 75mg ever since and have added a cushion under my bed matress and “touch wood” I’m Ok for the moment. The other smaller inconvenience I have with overly developed collaterals is the neck pain when painting the ceiling or picking fruit off a fruit tree when my neck is extended for a period of time.
Take care @SCJeff in making your decision. If you just opt for a styloidectomy/styloidectomies you are are going to have inflammation in the area of the surgery, which in your case, given the direct proximity to your internal jugular veins is going to have an impact on their functioning for a variable and difficult to determine period of time post op. It’s best to get it right the first time as revision surgeries are always alot more difficult.
6 Likes
Thank you for sharing. That all makes sense because I definitely feel worse when horizontal/after waking. How is your son doing now after his decompressions from Dr. Aghayev?
4 Likes
Thanks for that info @Emerald - when you commented about your sons & mentioned varicose veins that made me realise too how painful this could be (I had pelvic congestion for a few years & that was miserable), the info about the veins at night makes sense too…we have heard the occasional mention of the possibility of a stroke with IJV compression, but this doesn’t seem to be addressed seriously by doctors!
4 Likes
My son who had his operation in October 2025 , 9 months ago, is off hiking today, he is doing very well. His head pressure, brain fog and headaches, the most debilitating symptoms have gone. His 6 month CT scans were excellent with all his tortuous varicosed collateral veins totally disappearing and the right dominant internal jugular vein totally dilated out and a left smaller internal jugular dilated out.
He did have insomnia and anxiety that developed 6 months after the operation (possibly due to being all of a sudden hyperaware due to not having brain fog which he had had for the last 12 years, chronic circadian deregulation or the effect of 12 years of vascular congestion on the pineal and hypothalamus ???) but he finally got this under control with a combination of a low dose orexin antagonist (daridorexant) + and a low dose M1 M2 melatonin receptor agonist (agomelatine) after leaving these symptoms unaddressed a bit too long as he started to show signs of depression. It is amazing what a few nights of sleeping can do. The anxiety melted away quickly and his visual symptoms are slowly but surely starting to improve with his improved sleep.
As for my second son who was operated on by Dr Aghayev on the 6th July his recuperation from the bilateral decompression and bilateral styloidectomy were close to amazing. He slept like a baby the night after the operation, he was up walking 24 hours after the operation and was eating normally within 24 hours. He stopped all medication after 36 hours because he didn’t need it. The 24 post op CT scan showed that the right non dominant internal jugular was patent and the left dominant internal jugular had dilated out. I actually booked a hotel room in Istanbul for 16 days after the operation because I really was expecting a more difficult convalescence than my first son. As it turned out we ended up spending the next 16 days, after he was discharged on the 3rd morning after the operation, visiting Istanbul, the Bosphorus and the Marmara Sea like any normal tourist. I just made sure he had a siesta in the afternoon. It ended up being the best holiday we both have had in a very long time. My second son has chronic cognitive issues so it will probably be more than 6 months to a year or more before I expect any obvious changes from before the operation. But for the moment he is very bright and it would be difficult to detect that he had had an operation only 1 month ago.
5 Likes
@Emerald Yes, this is really good info, I had no idea but can definitely see this correlating to my symptoms. I slept upright for a lot of this year, even after surgery. I now sleep just slightly inclined and don’t know that I even need that. I also wonder, like @SCJeff, if I didn’t have the collateral compensation. I too LOVE to run, I don’t compete or anything but before last summer I would run several miles a day most days. But, in addition to my swallowing difficulties which started over a year ago, last summer what came on me was the inability to run. It felt like it was overnight - I’d be out for what would have been an amazing time, and just after I’d get going I’d feel just awful. The feeling was hard to describe but the sensation would say “stop running”. So I’d walk a bit, the feeling would fade. It was in my head but wasn’t a headache or pounding, just something bad. Eventually I just stopped running, cuz I could tell something was just wrong but I didn’t know what. So I wonder if at that point my collaterals were just not enough anymore, like I think @Filya and @Jules were describing. I feel great now, running feels great again. I’m not up to where I was yet but am getting there quickly.
So, @SCJeff - I wonder if that would be a vascular symptom. I did have other symptoms that I couldn’t totally attribute to vascular or nerves (cuz I just didn’t know) like intermittent blurred vision and hearing a tinging sound like little metal tinging balls. I get hints of the tinging now and then but it stops almost as fast as it stops and its rare enough that I don’t know that it’s even there anymore. Oh, something I do believe was vascular is the head pressure I’d feel when wound up - like laughing or yelling or playing rambunctiously with the kids (I’m kind of dramatic and loud). That had gotten a LOT worse since last summer also. It’s gone now too.
Regarding Dr. Osborne cutting it back to the skull, just recently we found that it wasn’t all the way to the skull on the left side. I had a ct done and it showed most of the knob that needed to go was gone, but the styloid was not cut past it as we had hoped and thought. Dr. Osborne thought he had reached the skull because 1) there was no getting any further we think due to the proximity of my mastoid; And 2) when he was chipping at it, because of its girth, it had a skull sound (he said bone and skull bone have different sounds when you are working on them) so he was trying to avoid what he thought would be breaking in to my skull and having a csf leak. I’m grateful for his caution. But regarding removing the compression between the styloid and the c1, yes - I am in the clear. All is great there.
Keep us posted how things go with Dr. Aghayev and Dr. Liu! Oh, I was going to add another thing I thought significant regarding doing one or both. Actually I have two thoughts I remembered: 1) I did my smaller side first which, in my amateur opinion, seemed to cause a pull by my left styloid to throw off things in my throat. I’m imagining my hyoid was being pulled off center or something. I can’t say exactly what cuz I just don’t know, but the symptom I had was nothing I would’ve wanted to go longer than necessary. So what happened was when I would swallow, there would be a clicking (like bone on bone maybe?) just behind my chin toward my throat (like where hyoid is). It started the night before the surgery on my left side and I couldn’t wait to get that thing out and have the clicking stop, it was gross feeling. 2) the second point I remembered, Dr. Osborne said while how each person is laid out is personal as far as their veins, muscles, etc, each person generally is symmetrical. So by doing my right side first, the knowledge of my layout helped a lot getting into the much more complicated left side. Another thing he learned about me by starting on my easier side (which like I said was still huge - but sooo easy on me) was that I was a bit of a bleeder. He said I have “healthy capillaries” and that was good to know going in to the next more extensive surgery. After the fact, he said had he put off my second surgery, he would lose my specific layout. Which obviously he does that all the time (goes in, site unseen), but it was just a plus, especially since my surgery was so extreme (five hours), which yours looks like it’s gonna be a pretty hefty surgery too. I’m not trying to change your mind to do both, just making sure you have things in mind to consider when deciding. Oh, the ct showed the right side was indeed cut all the way to the skull base, fyi.
6 Likes
@SCJeff @LisaMaria just to add another experience, I was told my styloids would be resected to the skull base. Because I continued having symptoms, I later had follow-up CT imaging. It showed my right residual was short less than .5 mm, but my left residual measured approximately 1.5 cm. I temporarily lost facial nerve function for about five hours after the right-sided surgery. I can only speculate whether that influenced the extent of the left resection, but I had expected both sides to be taken to the skull base, especially given the extent and cost of the surgery. I hope the remaining left segment, which is still angled inward, never becomes an issue.
4 Likes
I also hope the remains of your left styloid never becomes an issue. I saw a different surgeon but had a very similar experience w/ the right side being cut pretty short but the left one wasn’t. I don’t know how long mine were before or after surgery but in the CT imaging I had about 6 years after my second styloidectomy, the difference in length between my styloid stubs was quite apparent.
4 Likes
Ugh, that sounds frustrating cuz what do you do at that point!?!? I’m sorry to hear that. I too really hope what’s left never becomes a problem!
3 Likes
@LisaMaria Thankfully, my left side wasn’t causing issues, at least to my knowledge. But as I was reminded during the consult, surgery doesn’t get any easier as we get older, so it made sense to address both sides. I’m hoping the remaining styloid stays dormant, or at least grows slowly enough that it outlives me. 
4 Likes
@MGORNEAU There is a limit sometimes to what the doctors can do safely, if nerves are too close then you don’t want a damaged facial nerve- I saw a documentary where Mr Axon in the UK was assisting with a skull base surgery, he showed the facial nerve and it was just like a piece of tissue paper, so thin and fragile & really easily damamged…
1 Like