I finally had my ‘6 month’ post op CTV and follow up appointments with both Mr Axon and Dr Higgins. The good news is that my right jugular has opened up considerably since right after surgery and slightly compared to before surgery. The first image below shows the comparison. What I find very interesting is the significant change in compression from just the soft tissue i.e. the 1 day post op and 9 month post op have the same bone structure it’s just inflammation and muscle tension which are different and this leads to very different levels of jugular compression. I’ve actually been able to quantify this computationally using a tool from my engineering career and the second image shows how the pressure theoretically varies in the 3 conditions.
The less good news is that even though the jugular has opened it has not really helped my most troublesome symptoms – right side neck pain and headaches. Having talked things through with Mr Axon and Dr Higgins, including looking at lots of images we think that the most likely culprit for the neck pain is a misaligned right C0-C1 facet joint. Relative to the skull my C1 vertebrae is offset to the right laterally and rotated anticlockwise (looking from above). The third image shows this offset. My opinion is that the reason the pain increased after the op is because I lost the support of the 3 muscles and 2 ligaments that connect to the right styloid. These shouldn’t provide much support to the cranio-cervical joint when all is well but I believe could be used to compensate when there is dysfunction.
So Mr Axon and Dr Higgins can’t really do anything more for me as a patient at this point (although I’m still in touch regarding helping them predict pressures using the CFD software).
What I’m focussing on now is trying to realign my top vertebrae using conservative measures. I’ve been learning as much as I can about the cranial and cervical anatomy. I’ve been doing very specific exercises on top of the general strengthening exercises to move C1 in the correct direction to get it centralised and aligned by working on the appropriate muscles that attach to the transverse processes of C1 (fortunately Mr Axon left all these intact after the surgery) – particularly the left rectus capitis lateralis muscle and the right levator scapulae muscle. This strategy is providing more relieve than anti-inflammatories/pain killers and I’m generally not using them anymore.
I do wonder if I’d benefit from prolotherapy at C0-C1 or even fusion but based on all the info I’ve gathered over the last 3 years I do not think the risk/cost/benefit ratio is worth it for my specific case. I’ll continue with conservative measures and live the best life I can. Best wishes to you all.
@M_UK you might want to find my posts on this forum re thoracic spine. There is a very big chance your displaced C1 is THE result of misalignments lower in the spine. The muscles are trying to compensate it so that the head remains looking straight forward when the remaining lower body isn’t straight, causing the weakest point to give in.
@vdm yes you could be right regarding misalignments lower in the spine. I certainly have some problems in my L5-S1 region and am having surgery to free a trapped nerve in the foramen at this level. The exercises I do work my entire spine. Have you found any particular exercises or treatment particularly useful in your situation?
Regarding the styloid remnant, it does seem to have grown slightly. I pointed this out to my surgeon in our most recent appointment but he didn’t have much to say on it.
Thanks for the update! I guess it’s good that your jugular has opened up, & having the styloid removed has at least ruled that out. Interesting about your software, brilliant that you’re using it to help others! Very strange that it looks like the styloid is growing back as it would’ve been removed to skull base- might be something to keep an eye on in the future…
I hope that the exercises you’re doing help with the misalignment long term, and thank you aagain for coming back on!
Hi @Jules, Actually the styloid wasn’t removed to the skull base. Mr Axon does use that language but when I pushed him he actually means he removes it to 10mm from the skull base. You can see on the image immediately after surgery that there is a styloid remnant. He can’t go any further without risking the cranial nerves.
It does look like the styloid regrowth is beginning to put pressure on your IJV again. I’m surprised Mr. Axon wasn’t more concerned. I’m glad he’ll be monitoring your pressures in that vein w/ you. I hope he would be willing to do revision surgery if necessary. One doctor in the US, Dr. Old reportedly used a novel approach on a FaceBook ES Forum member where he removed styloid regrowth to the skull base & packed the skull base w/ cadaver bone (May 2021) after styloid removal to ensure no regrowth. That could be done even w/ the styloid remnant to “kill” the tip from whence regrowth occurs.
So great to know your approach of conservative muscle strengthening/stretching is helping reduce your pain. I do agree w/ @vdm, our spines are spines are very intricately put together & when there is dysfunction in one area, it can affect other areas far from the dysfunction as they adjust to try to “help” the weaker part. This in turn causes compensation in the healthy parts which results in pain.
I would stay away from prolotherapy based on many testimonies of our members who’ve tried it. Far more have felt they wasted much money for no benefit than those who said they’ve had positive results.
Keep up the good work and thank you for the update.
@Isaiah_40_31 the remnant isn’t actually putting pressure on the vein, it’s just alongside it. The jugular now has room to move backwards at that point due to the C1 transverse process resection. It’s clearer in the axial slice.
@M_UK Kool job. I really like the CFD software that simulated pressure gradient on the brain venous sinuses. I know it is not highly accurate but gets the points across. I can see the pressure was higher on the sigmoid/transverse/torcula sinuses on the operated side presumably from the constricted outflow in IJV due to postoperative swelling (which I happen to be dealing with now as I am 2 wks from surgery).
Wondering how easy it is to use the CFD software. I googled it and came across a free one (Blood Flow Tutorial - SimFlow CFD Software). I am a lazy guy and like to use simple ones. This one seems bit involved. Any insight on using it would be greatly appreciated.
BTW, collaterals have not gone down in size which makes me think that it might take time to shrink or it could be that there is still some constrictive muscle/scar tissue slightly compressing the IJV.
@KoolDude it’s quite an involved process. Getting the geometry quality into a form the CFD software can mesh takes some skill in a CAD package. Then CFD software is generally not very intuitive. Fortunately for me I’ve been using such software for over a decade in my day job so I didn’t need to learn it for this application.
Regarding the collaterals Dr Higgins and Mr Axon didn’t expect them to change however successful the surgery was. I was quite surprised by this view.
Hello, thanks for sharing your interesting update here. I have learnt trapped fluid is a big issue for me. If you think your spine may be an issue it may be worth visiting dr iain Smith at Newport Chiropractic (only Atlas Orthagonal UK expert) to see if he can help you or not. He is very honest & if he can’t help you he will say so. He has advanced 3D scan capability.
You don’t say if your head pain feels like it’s caused by pressure of fluids trapped or not. If it is then I have found since my VES surgery that lymphatic practitioners with Hivamat 200 machine can do wonders in moving the fluid in upper body and head. good ones will teach you how to do manual lymph drainage to help yourself. Vodders training seems relevant standard. It is a bit of a Groundhog Day experience as fluid does return after a while. Hoping if keep going will improve/resolve. mlD Association in UK has search page to find qualified people near you. Physiopod uk website helps you find those using Hivamat nachine. Great for post op recovery I find.
I did have spinal fusion (C2/C2) with mr timothy in Leeds this year. It has helped me but agree is not to be undertaken lightly and is only a partial solution if you have both instability & VES.
@PatientD I did actually start with Iain Smith 3 years ago and had the full AO treatment. Unfortunately it didn’t help. I don’t think my symptoms feel like trapped fluids, especially not since the surgery. It feels like a more mechanical, clicking, muscle tension type of thing.
@M_UK I know Dr Higgins has looked into your venogram but looking back your 3D venogram, it appears that your left transverse sinus has somewhat narrowing in it. I do not know if this is an artifact of the 3D rendering you used or there is actual narrowing but sometimes arachnoid granulation can cause similar narrowing on brain sinuses . I assume since Dr Higgins has looked into the Venogram, it is not an issue. Are your headaches caused by muscle tension along the cervical area? or it is like the pressure type linked to IIH.