@ryanab all looks good regarding your IJVs at the level of C1 now. I do see the liquid/air in the space of where your C1 wings used to be. Not sure how long that sticks around for.
The only other IJV compression I can see is between your anterior scalenes and SCMs (which I pointed out before).
I wonder what your posture is like? When you are sitting is your sternum collapsing and pointing at a downward angle, or is it flat / slightly angled upright? I ask this because I wonder if your chest and shoulders are dropped causing your SCMs to be taught/overstretched and compressing your IJVs against your scalenes? I wonder if physio could be something good for you, now that you got your styloids out that probably have caused many muscle compensations and imbalances. If you pretend there is a rope pulling the BACK of your head up and bring your chin slightly down towards chest, does the head pressure go away? If so, I wonder if the SCMs are causing sufficient IJV compression.
To illustrate exactly what I mean posture-wise, watch this video beginning at 40 seconds. Watch what happens to his chest orientation at 50ish seconds when he pulls the back of his head up. The sternum goes from being slouched (and pointing down) to tilting up, and lessen the distance between the sternum/clavicles and the skull, and give the SCMs some slack.
If that postural position (which will likely be hard to hold at first) makes your pressure headache go away with time, than I think maybe the SCMs (which could be part of a larger postural issue) is a culprit. Many ES members would have problems engaing in this good postural form due to their styloids, but now that yours are gone, I wonder if this could be something you work towards with the goal of given those SCMs some slack. I’m not a physiotherapist, but I think if you are in agony than anything is worth trying.
•B vitamin complex has been recommended for nerve healing. No specific brand, just that it’s a combination of B vitamins.
•Steroids are powerful anti-inflammatories so can help reduce some of the symptoms that occur in the couple of weeks right after surgery. I prefer dexamethasone to prednisone because for me, the dex has less side effects than the pred. Side effects include difficulty sleeping, feeling agitated/hyperactive but more mentally than physically, feeling grumpy/short tempered - these are the things they do to me but the benefit for me outweighed the side effects. Dexamethasone only caused me to not sleep as well as I would like whereas prednisone caused all the symptoms I mentioned. Some people get increased appetite & gain weight from them, but since you’d only be taking them for 10-14 days, that’s unlikely to happen. Here is a more complete list of possible side effects some of which I didn’t experience:
Increased appetite and weight gain
Sleep disturbances (insomnia)
Mood changes, such as irritability, anxiety, or restlessness
Stomach irritation or heartburn; taking the medication with food can help
High blood pressure
Elevated blood sugar levels (hyperglycemia)
Fluid retention, which may cause swelling in the lower legs, face, or neck
Acne or other skin changes
Increased sweating *
•You can ice as long as it seems to be helping. I iced for 6+ weeks & also slept w/ my head elevated that long. Some people only sleep w/ head elevation for a few days & only ice during the first week. At some point beyond 2 weeks post op, using heat on your neck will stimulate circulation which can also help healing. Alternating ice & heat can also be effective.
•It may take 4-8 weeks for your mental clarity to begin returning as your brain needs time to get used to your new level of blood flow. Lack of mental clarity may also be related to the anesthesia you were given during surgery. I’ve gotten brain fog that lasts several months after each surgery I’ve had which is annoying, but it does fade eventually.
They’re still quite compressed no ? it’s just that it’s not bony compression anymore.
Interesting remark but I genuinely don’t think that SCM compression is the source of this much head pressure & suffering. They look compressed for sure, but not severely. I also wouldn’t look at my post-op CTV for that as my SCM muscles are extra tense now due to the surgery.
As of now I am pretty much bedbound 95% of the day, neck supported against a pillow, and for last 2 months before surgery too. So I don’t have a specific posture in “daily activities”. Before, i used to have my head bit forward, used to work on my laptop & phone quite a lot, so lots of looking down. My shoulders are a bit titled towards my chest/forward posture.
And I haven’t noticed a specific posture, that causes a significant change (relief) in head pressure, if I had a trick to make my 24/7 head pressure disappear/decrease best believe I would be in that position for hours on end everyday. All i know is that my ICP increases even more when bowing down, or laying/sleeping flat.
Maybe there are postures that would slightly help the decrease the high pressure feeling but posture is for sure not the source cause of my issues, i know that because I’ve been, having 24/7 head pressure (literally, no day or hour that went pressure free) for the past 1 year + at least. This now marks my 11 months mark since i had to drop my job because of said… huge head pressure.
Thanks for the informations @Isaiah_40_31, I will order B vitamins as soon as I am back home in 2 days. I’ll also try to see my doctor next week (if I can :/) to have a talk about prescription steroids of the dexamethasone type. As of appetite & weight do not worry for that: I lost sooo much weight in the past 2 years of being sick that I don’t mind any medicine that would make my appetite & weight increase I am pretty much bones right now. I’ll also restart taking magnesium, not sure if that’ll help much but my neck muscles are very tense now (unsurprisingly) so that might help a little bit.
Is the icing used to decrease inflammation/pain in the surgery zone, or is it for decreasing the (internal) scaring & liquid forming up ? As for heat I am definitely more used to using that heat with the hot-water bag I have, I think i’ll start using it from today as my muscles at the top of my back and back of the neck are extremely tense.
The icing would be more to help with swelling, inflammation & pain around the area… If you have to lay fairly flat then it’ll take longer for the swelling to go down, can you be propped up a bit?
Looking at the 3D CTs images, it looks like there should be enough room for your IJVs now, it may just take a little while for them to re-open. Occasionally members have had balloon angiography to re-open them, and in extreme cases a stent might be needed now that any bony compressions have been removed, but it’s too early to think about that.
I did post elsewhere suggesting maybe a blood thinner might help otherwise to ease the head pressure, meds like Plavix, Brillinta, Eliquis, Xarelto, Diamox have helped others. It is still early days though, I know it’s easy for us to say, but quite a few others have found that they feel grim after surgery & worry that it hasn’t helped, but it does improve; this was a major surgery & your body will be traumatised!
@ryanab I think you may be confusing IJV compression with IJV diameter. Both of your IJVs are small in diameter in the upper half of your neck. Usually people have a very obvious, bigger, dominant IJV, but you don’t. Both are quite small. Before surgery, they were small + being compressed. Now just small. I can’t find any compression of the IJVs anywhere along their paths, except for the SCMs/scalenes.
I’ve attached axial view imaging of the IJVs between the skull base down to C2. I don’t see any significant compression of either IJVs by anything. Mind you, this is in a very specific laying down position, but you say there is no position that helps anyway so any IJV compression that would be occuring would be present in this imaging too.
I think it could also be possible that with time, the IJV diameters could get bigger since there is no bone blocking them anymore. I think they could naturally get bigger in diameter over time. I think stenting could be the only other thing that would open the diameter up. Because there is nothing else to remove because there is nothing compressing them. There may be very minor compression occuring by continued swelling from surgery, but I can’t see any. The IJVs do contact that air/fluid space but again, it isn’t causing any visible compression, at least in this position. I suggest going into the axial view and locating your IJVs now that I have them labelled and follow them all the way up to the skull base and down to the heart so you can see what I mean. The only location where your IJVs “pancake” (i.e., are obviously visually compressed) is lower down by your SCMs/scalenes. Not saying that you’d find relief if the compression there went away, but it’s the only way I can think of for you to naturally open your IJVs a bit more.
I genuinely hope “invisible compression” is there due to the internal swelling (liquid & air), instead of them being stuck at a very small diameter at the top of the neck, like this. That possibility is the only "optimistic one in my case I guess
I followed the IJVs till the heart like you asked (I compared pre and post-op CTVs) and I noticed that on the post-op one the ICAs (carotids) are now pressingthe IJVs quite a lot at some point, i hope that this is just due to swelling…
In a few months (if still alive ) I’ll look into working on the SCM muscle via physio, for now impossible obviously + they’re tense due to surgery.
I also annotated the PRE + POST surgery CT scan now, at the C1 level precisely. Here are the images for all members:
I am optimistic for you as well! I genuinely think they could get larger in diameter as they get used to blood properly flowing through them. I think the combo of them naturally being able to fully expand + reduced swelling/air/fluid + physio will get you where you need to be!
Hi everyone, I thought about coming back to leave an update now that we’re 30 days post-op. To get the context of my imaging (pre & post-op) please scroll up in this page.
Zero relief, suffering: I am quite heartbroken to be honest as I am feeling no relief. Head pressure is still extremely severe and tinnitus (whistling-sound 24/7) has even more aggravated post-op. I am suffering a lot everyday at home, in bed mostly, trying to deal with the head suffering and the permanent sucidal thoughts (don’t worry for me guys) but yea the head pressure & tinnitus is at unbearable state to be honest, it’s very severe.
I had 2 days (9 days ago) where head pressure was like 15% less severe which helped a lot already and I was able to walk outside, drive a little bit etc. But it’s hasn’t been the case for a moment now.
Range of motion & incisions: The only positives is that my neck obviously healed a bit, i can turn my head 60 degrees each side without discomfort. My surgery incisions/scare zone are very hard. The right side has been done better, while the left side the incision is done badly and I feel a lot the hard sutures and it created like big hard lumps that I feel when touching the zone. (I am 90% sure that my left side was done by the second surgeon, learning this type of surgeries with doctor K., that’s also the side I got all my nerve complications!)
Neck muscles: My neck muscles are tight but especially the LEFT side: they are very tight including the muscles at the top of my back (in the middle & left side). When i turn my head to the right (so my left side traps/neck muscles have to extend, it is very uncomfortable/painful, pulls a lot). For context even pre-surgery left side was always the most problematic (tight neck muscles etc)
NERVE COMPLICATIONS: I have 4 complications
Bad control of my tongue: I still struggle a lot with my tongue but I can control it a bit better than my last update 19 days ago. This complication make eating hard, it’s a struggle. I still don’t speak the same way as before (my voice is totally understandable it’s just that I don’t pronounce some letters as good as before and my voice is not as deep as before, it’s weak.)
Left shoulder: still very weak and weird, but improved a bit compared to last time we spoke. (My right shoulder/arm is strong and very good, all complications are left side)
Mild first bite syndrome: when I eat something, the first few bites are painful in the left side. This wasn’t very present a few weeks ago but I noticed it this last in the last 8 days. After 4 bites it goes away. So not the a big suffering more like annoying.
Bad deglutition: this has improved quite a lot, but I still swallowing my own saliva in my airways a few times a day. And I don’t swallow food as easy as before. But it’s not a severe case or anything!
To recap my MAIN sufferings:
Very severe head pressure 24/7
Severe tinnitus (constant whistling-like sound) 24/7
Full/clogged ears 24/7 (i can pop them by moving my jaw in some way but they get full again within a millisecond)
Strong occipital-pressure left-side
I can’t bend over my head/bow down otherwise the pressure builds up a lot, and my left side superficial vein inflate a lot (especially the veins between my ear and eye, you see & feel a big lump of blood forming up)
(Extreme fatigue all day)
(Severe insomnia, sleeping in the morning, & only around 5 to 6h max)
The 4 nerve complications post-op (left-side)
Tight neck muscles left side (neck, traps, back: painful to massage strongly as well)
Right side: very hard SCM muscle at the zone of the incision.
Food supplements
To try and help with recovery 2 weeks ago I ordered supplements here’s everything i have at home now:
(Ordered after ai recommendation: ALCAR (Acetyl-L-carnitine), Lion’s mane )
Last words
That’s it. Overall just suffering a lot and losing hope, I am starting to seriously suspect that either my IJVs are either very compressed still somehow, or that there is serious venous outflow issues IN OTHER ZONES, or that IIH is the main issue, or that i probably have many obscure issues/conditions I am not aware of.
@ryanab - It’s good to know that you have some positive improvements. You’re still in somewhat early recovery especially since you had bilateral surgery. It’s very good news that you had a little reduction in your head pressure for a couple of days as I think that may show what is coming as more time passes. It may still be another month or so before your energy comes back. It’s your body’s way of keeping you less active so it can put energy into healing not into your other activities. I expect that’s not what you want to hear but it was my experience after my surgeries.
I know loud, chronic tinnitus is terrible. I suffer from that, too. Your tight neck & shoulder muscles might be playing a role in that. @vcp02 posted some interesting information today: Cranial-Cervical Fascial Influence After Eagle Syndrome that you may be interested in reading as the information could help you move your recovery along.
As far as a tight incision, it’s helpful at this point for you to begin gently massaging your incision scars using some type of oil on your finger tips as a lubricant. Bio oil, vitamin E oil, or coconut oil are good options. Gentle massage can help reduce the thickness of the scar as it brings better blood flow to the area as it heals. Your left side could be stiffer/thicker feeling because there is more swelling on that side. The scar tissue may naturally flatten out as time passes.
Did Dr. Kamran recommend getting a follow-up CT scan at some point after your surgery?
I’m so sorry that you’re still feeling as bad after surgery, I’m sure it doesn’t feel like it but as @Isaiah_40_31 says, it is still early days…the nerve issues you’re having will hopefully improve with time, these are nerves which other members have had issues with after surgery & they usually do improve, PT might help or there may be some gentle stretches or stimulation exercises you can do in the future to help. Gentle massage as well, and again in the future some massage/ myofascial release might help with the tight muscles. It could be that some of those tight muscles are causing compression of the IJVs, so hopefully this isn’t permanent. If it doesn’t resolve in time (maybe months down the line unfortunately), then perhaps stenting of the IJVs might be needed if they don’t re-open, although I know finances & finding doctors are probably an issue for you?
They’re very small, but if you can hang on to the couple of positives you mention that will help, and remember it is a huge surgery you had in a very sensitive area…We’re here for you any time you want to off load
I don’t know if you’re on any medication it’s best to check if supplements are okay with those, and @Emerald posted this info which is a good idea to read too: Warning on Vitamin B6 supplmentation - General - Living with Eagle
Sending you hugs & will pray for big improvements for you
Hey @ryanab , hang in there! I am also now 9 weeks post-op (unilateral IJV decompression) and my recovery has been non-linear, with new symptoms appearing around 6 weeks post op (quite severe trigeminal migraines) which fortunately have since resolved. It’s an unfortunate reality that it takes a while for things to get better after this surgery, but you shouldn’t lose hope. As others have mentioned, 30 days post-op is still fairly soon in the recovery process.
I also want to mention two supplements that I feel helped me a bit post-op in terms of my brain fog and fatigue, which might be worth looking into: creatine and glycine. Creatine is purported to have neuroprotective effects ( Effects of Creatine Supplementation on Brain Function and Health - PMC ), and has been reported anecdotally by other members on this forum as being helpful for brain fog ( Brain fog and creatine ). Glycine, on the other hand, is an amino acid that is a precursor to glutathione, a powerful antioxidant, among its other roles. I feel the glycine in particular has helped quite significantly with my anxiety and helped improve my sleep slightly. My surgeon (Dr Nakaji) was very interested when I mentioned I started taking glycine. He mentioned glycine is a supplement he suspects may improve symptoms for people with this condition, as it may play a role in improving the efficiency of the brain’s glymphatic system, which is thought to be disrupted in people with high intracranial venous pressures (that’s what I understood at least, I might be wrong). Unfortunately, because there are no studies on this, he is in general reluctant to recommend it to patients. He asked me to keep a journal to document how my symptoms fluctuate as I take it.
In terms of dosage, I take 10g of creatine and 10g of glycine in the morning, and a further 5g of glycine before sleep. I do want to underline, though, that as far as I have researched, there is no clear scientific evidence that either supplement should help with our condition, and that I definitely am not a medical expert.
Thank you for sharing the information about what’s helping you a bit post op, @crumblecookie. Having different options suggested for our members to try for helping pre & post op symptoms is great. I especially appreciate your final sentence & the emphasis that you’re being sort of a test case for Dr. Nakaji. Our members need to make informed choices especially before taking non-Rx supplements as those are so readily available w/o medical advice.
Hi Crumblecookie, Sounds like you are deficient in glycine. Maybe you are a vegetarian ? From personal experience a few years ago a glycine supplement of a night caused insomnia. (I’m not a vegetarian and I adore roasted chicken skin which is a great source of glycine). The most common side effects of glycine are digestive issues, nausea and headaches.
My son is approaching 6 weeks after bilateral internal jugular decompression surgery with Dr Kamran. He doesn’t take any supplements or medication other that a drop of Vitamin D in the morning when he remembers. I do however make sure he has a healthy varied diet and gets outside once or twice a day (weather permitting) for a slow walk of about 1 to 2 kms.
Hi @Emerald , thank you for sharing your experience, it’s interesting to see that you had the opposite reaction. I am not vegetarian, though I don’t think that is a sufficient argument against supplementation (if it works), since as far as I know there isn’t any agreed upon recommended daily intake. Fortunately, I haven’t experienced any of the side effects you have mentioned.
hey @ryanab , I’ve read your whole post and felt heartbroken to see that you didn’t had the chance to have a rested post-op. Can you tell us about updates? How did your post-op evolve from Nov 2025 up to now? Regards
I am pretty much bones right now. I’ll also restart taking magnesium, not sure if that’ll help much but my neck muscles are very tense now (unsurprisingly) so that might help a little bit.
) I’ll look into working on the SCM muscle via physio, for now impossible obviously + they’re tense due to surgery.
