This is my first post, happy to be here (well technically I guess I’m not)
I have IJV compression which likely explains my constant headache/headpressure. Likely after a couple for jerks in my neck and concussions. I’m trying out a 4 NUCCA treatments soon hoping it can move the C1 a bit away from the styloid process, but after that (if it doesn’t help) I will probably get surgery. I have an option to get a free Styloidectomy in Denmark but if I need more (like C1 resection / further decompression) I will probably go to Turkey and pay Dr. Kamran Aghayev to do so.
QUESTIONS:
Any thoughts on getting a styloidectomy first, even though a revision surgery with C1 resection might end up being needed later? Any experience with this? What did the doctors say about this?
Has anyone had complete decompression from styloidectomy alone (without resection of C1) and want to share their experience?
Is it a problem to operate the same side twice (if one first gets a styloidectomy and it turns out this isn’t enough to decompress the IJV)? Does scar tissue from the styloidectomy make the second surgery significantly harder or riskier?
Any regrets doing it in two stages instead of full decompression from the start?
I will upload my CTV in a later post, hopefully you will have some thoughts on those as well
Hi & welcome to the site! I’m glad you found us but as you said, a shame you have to be!
It’s hard to know with IJV compression without getting opinions on your imaging as to whether you have mainly styloid compression, or whether the C1 process is causing a fair bit too…just to complicate things, we’ve had members who’ve had compression from soft tissues too, like other blood vessels, nerves or muscles.
I had successful surgery for bilateral IJV compression with just a styloidectomy, I didn’t have C1 involvement. Sometimes this can be enough, but the surgeon would have to be very experienced with the surgery, and would have to remove the styloid right close to the base of the skull to stop the compression- if they just shorten the styloid to a ‘normal’ length as some less experienced doctors do, then this is unlikely to help with your symptoms, so this is something to check with your doctor.
Some doctors feel that a C1 shave can contribute to instability, and as many members have this already, this is a concern, but not everyone agrees with this! Some doctors are quite conservative with how much they remove, so occasionally this isn’t enough & we’ve had members need revision surgery, other doctors (like Dr Aghayev) remove more to ensure the surgery is done once only. The risk with having revision surgeries is that more scar tissue can form, which can itself then cause compression, so it’s a tricky decision really!
We’ve had some discussions and info about Dr Aghayev, in case you’ve not seen these: Info About ES by Dr Kamran Aghayev - General / Research Papers - Living with Eagle A Review Of IJV Compression by Dr Aghayev - General / Research Papers - Living with Eagle Everything you need to know about Dr. Khamran Aghayev - General - Living with Eagle
So if you do want to go ahead with surgery in Denmark, I would definitely as your doctor how much they intend to remove of your styloid, we have a list of questions we suggest members ask their doctors:
How many ES surgeries have they done and what was the success rate?
Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
Will it be a day case surgery or will you need to stay in?
Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
What painkillers will be prescribed afterwards.
Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
We have heard that occasionally doctors use surgical clips which are left in, it’s been suggested that these could interfere with chiropractic adjustments if needed post-surgery, so something to consider, and also we have now seen members who’ve been left in pain from the clips and needed further surgery to remove them, so do ask if they might be used.
Hope this helps!
@IJVman - I had a styloidectomy first w/ a second revision surgery to remove more of my styloid & decompress my IJV (left side) because the IJV compression was missed by the first surgeon I saw & he doesn’t deal with it anyway. I didn’t end up needing a C1 shave which was also good. I’m also fortunate that my body doesn’t produce excessive scar tissue so I had no problem w/ having a second surgery on the same side. Obviously I had no regrets.
We have a number of members who’ve had complete decompression by styloidectomy alone. The disclaimer here is that as far as I can recall almost all of them saw one of the several surgeons we know cut the styloids very close to the skull base & that took the pressure of their IJVs so they could expand to more normal diameter.
We’ll let you know what we see when you’ve uploaded your CTV. Obviously we aren’t doctors so whatever we say can’t be considered diagnostic. I will annotate some of your images, but that said, I sometimes make mistakes.
Yes, I’ve looked into Dr. Aghayev a lot (and will definitely at some point in the near future have the free online consultation with him to hear his take on the matters).
And thanks for the inspiration with the questions for my doctor
Did you (and your first surgeon) know you had IJV compression when the first surgery was done?
How did you (and the doctor) know, that you didn’t need a C1 shave to get decompressed?
Okay - I will definitely not let a surgeon operate me without at least striving for cutting the styloid near the skullbase, as my understanding also is that this is important in cases with compression.
I will upload my CTV asap and hope you guys have some remarks (especially if you also think, that a C1 resection will be necessarry for the decompression to work. Is there any form/format you prefer? I have reconstructed the CTV in 3D, and i have taken a video as well as pictures. I guess it’s too much uploading a ZIP file with the actual DICOM-files?
You can upload the ZIP file to https://www.dicomlibrary.com/
Your private information will be filtered.
After the transfer is complete, you will receive a link that you can share here.
@IJVman - My first surgeon only wants to see CTs w/o contrast (even now - 11 years after my first ES surgery). It’s my belief that he isn’t interested in dealing w/ IJV compression so “ignorance is bliss” i.e. if he can’t see it, he doesn’t have to be concerned w/ it. Sorry if that sounds harsh but I’ve known of several of our members who’ve needed revision surgeries after seeing him because they had IJV compression.
My IJV compression occurred between my two styloidectomy surgeries when I had a cycling accident with a head injury that caused my C1 vertebra to shift left & mash my IJV against my left styloid. When my first surgeon did my second styloidectomy, he left that styloid below the level of C1 so didn’t do the “skull base removal” that I was told was done which would have most likely relieved the pressure on the IJV. It took me 6 years to figure out that my remaining symptoms might be from IJV compression & another 3 years to get it diagnosed & fixed.
During surgery, the styloidectomy is done first & it’s pretty obvious if the IJV opens well once the pressure of the styloid is off of it. If the IJV doesn’t respond well to the styloidectomy then further work is done to remove other compressors i.e. C1 & soft tissues, to get the pressure off the IJV & allow it to reopen. Occasionally, the IJV will reopen during surgery but will collapse again during the first few months of healing. Ballooning (venoplasty) is sometimes successful in getting the IJV to re-open in those cases, but if it’s not, then a stent is the next thing to consider.
I look forward to seeing your CTV. We love 3D imaging here so it’s helpful that you’ve already done the 3D conversion. Instead of submitting the dicom library link, it’s a bit easier for us if you post pictures from the front, back & both sides & an axial image at C1. Though dicom library will give us all your images, it’s a lot for us to sort through to find those we feel are relevant.
