Did you get complete resolution @jules? If so how long did it take? Don’t want to be unrealistic but need a bit of hope too,
@DogLover turning my head upsets my symptoms. My neck is pretty stiff so I try not to turn. I haven’t noticed symptoms get worse with my arms up though. I do have aches, pains and fatigue in my arms and my shoulders crack a lot since this has happened. I don’t know what that relates to.
For whatever ever reason, I’ve found that the motion of chewing helps alleviate the head pressure briefly. Not sure if my jaw movement is affecting the styloids/pressure on jugular veins.
Also, I’ve got myself in a bit of a state. Where my atlas is fused to my skull and sits a lot higher, my compression is a lot higher and I’m worried dr axon might not be able to operate so high. Here’s an image to compare. The image on the left is a normal skull/atlas. On the right is mine. My compression is right up close next to my mastoid process.
I just feel like having hope for resolution is some ridiculous fantasy, cause the odds are stacked against me.
It’s been a really rough day.
Hi @DogLover,
I thought I’d chime in with my “point of view”.
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Collateral veins… Collateral veins, from what I’ve heard, may develop “on demand” when there is insufficient “main” veinous route Collateral circulation - Wikipedia
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Is it atlas pushed forward or the skull pulled backwards? Might be either, might be both, might be none in your specific case. As for the “skull pulled backwards” I’ve been suspecting that “military neck” (loss of cervical lordosis) and loss of thoracic lordosis (as a contributor to/cause of the military neck) may make certain neck/back muscles totally overstretched causing them to immobilise the neck and skull. Try to visualise what happens to the muscles if the thoracic and cervical spine regions are “straightened”: unless the muscles on the back and front elongate enough and still remain flexible, they will start pulling your skull down both in front and back (more on back) and prevent smooth movement around the atlantooccipital/axial joints in all directions. I have been thinking of making a simplified animation if I could get my hands on a skeleton model.
The diagrams are in this post: Question for those with military/straight neck (loss of cervical lordosis) - #3 by vdm -
Re your particular styloid process, to me it feels like the whole structure is made of three separate “segments”, one of them (red) being the original short styloid process, and the others - calcified ligaments/muscles.
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Prolotherapy likely works by causing inflammation around the tissue, provoking the body’s healing process as a response. I bet you already have enough inflammation in that area right now, as the calcification one of the ways the body responds to the inflammation, and the calcification may cause further inflammation causing a vicious cycle.
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Chewing might alleviate the symptoms as some of the mandible muscles/ligaments are connected to the styloid processes, which means a) if the styloid processes are still thin and flexible, and just elongated, they might move around a little, b) those muscles and ligaments might be directly or indirectly compressing the nerves/blood vessels
UPDATE: sorry I took @Dontgiveup’s CT render for @DogLover’s… ahh, that brainfog… sorry.
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That is one crazy thick styloid at the skull base. Can’t see enough of the other one to comment, but I’ll bet Dr. Axon will be able to manage a thorough surgery. He’s gained a lot of ES experience over the years since I’ve been on this forum. I expect his technique is only getting better.
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@vdm,
Interesting theory regarding @Dontgiveup’s styloid “anatomy”. It absolutely could be the case. Didn’t put the pieces together till you outlined it & made the suggestion. Good sleuthing, Sherlock!
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@Dontgiveup - I think when the symptoms are bad enough we must choose what seems the lesser of two evils i.e. living with the pain, pressure, brain fog, etc., or surrendering ourselves into the hands of a surgeon we believe might have the know-how to “fix” us. It can be a brutally difficult decision to make especially when your case is more complex than average as there are risks for even those w/ less complicated ES situations. I am really glad that you & @DogLover are thinking out loud & sharing information & encouragement regarding your similar situations. I am praying for both of you to end up with the best possible ending to your ES stories even though there’s still a bit of a journey ahead for both of you.
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So sorry you had a bad day @Dontgiveup
I’m not dismissing your concerns at all as you seem very well informed and smart if you don’t mind me saying. However, if Mr Axon can get at the base of the styloid process surely he can remove it? At first glance from the images you put on earlier the mastoid looks far enough away from the chunkiest part of your styloids.
Do you mind putting more pics on? I would be really interested. I’m sure if you talk to Mr Axon about your concerns he can put your mind at rest; maybe he will go in from a slightly different angle.
I really hope you consider getting your name on the list soon. Simply because I think you will have months to do more research and change your mind. It’s not as if they won’t be able to fill the space quickly if you cancel, but at least for now you are moving down the line and then closer to the op you can make a more informed decision. Have you discussed with any family or friends? I know it’s difficult because they can’t possibly keep track of all the medical intricacies.
I read some symptoms of people last night on this site, just to reassure myself I was on to the right thing. Yours read as if I had written it; so much so I read it out to my husband. I have just recently started to feel a bit more optimistic. If you had asked me even a few weeks ago I would have said my optimism that I would get better was about 5%. I hadn’t given up hope but was close.
I had a sad night last night too. Felt better when I woke up to a reply from you and the ever kind and supportive @Isaiah_40_31.
Oh and YES. I feel better from chewing too!! Bizarre isn’t it?
Hope you have a better day. Here’s a pic of 3 of our dogs to cheer you up (hope you like dogs!)
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Hey @DogLover
Thanks for your kind words and support. It’s hard not to go into a dark place when you feel so terrible and it feels like nothing will get better. I’m trying to stay positive. It just seems pretty bleak.
I also read through peoples stories/symptoms continuously to make sure I am on the right path. Doubt always creeps in. Even though I have enough evidence to provide an answer for what’s wrong with me, I still find myself second guessing everything.
From what I’ve heard, I believe I am extremely lucky to have Dr Axon as my surgeon and I am hopeful he can reach right back to the skull base. I’ve just noticed that in one persons CT scan post surgery with Dr Axon, that the styloids weren’t taken all the way back, but more than enough to provide jugular decompression. So maybe it’s not always necessary to take them back all the way to the base. I know the higher you go, the more dangerous it gets with all of the nerves etc.
My compression is literally so close to my skull and I’m worried he’ll say due to being so close to important structures, that he had to abort surgery or something… and I know I’m just destroying myself by coming up with crazy scenarios. But it’s still a possibility. It’s hard to think straight at all.
I’ve tried to discuss with family but they can’t seem to grasp much of this and can’t provide the support I really need. I try to explain to them but it’s almost impossible. I think one of the most moronic things I’ve been told, is that I just need to go for a run 
…might decide to just do that if it’ll put me out of my misery.
It’s awful that you are feeling all the same symptoms I am, but I’m glad it’s given you more reassurance that you’re on the right path. It’s good to hear you’re feeling more optimistic too.
You’re the first person I’ve come across who had said that chewing relieves some head pressure too! It doesn’t last long, but at least it gives more reassurance that the problem definitely is in that area.
I’m waiting to hear back from Dr Axon. I emailed asking to bypass the angiogram and be put straight through to surgery. I’ve really had enough. I know everybody has to spend time waiting but it’s honestly, it feels so cruel. I’m trying so hard to hang on.
I can’t tell what the mastoid process is on my axial scan.
I can post more pics. It would be easier if I could post a video of the axial images. But I can post some more 3D scans of the compression. Not sure if that’s helpful or not.
And yes! I love dogs! - I am totally a cat person but I really love all animals. Even spiders lol.
Your dogs are gorgeous. I bet they give you a lot of love and support. That’s where animals can help where a lot of people can’t.
I can see why you’re concerned as your mastoids do look low but it also looks from original pic that there is room around your styloid process. This is your mastoid below.
Have you tried this button on Radiant
It lets you look at 3 images like this so you should be able to have a good look round from all angles and see what you think.
Also Mr Axon told me has had done over 300 of these surgeries and he will have seen thousands of scans and if he’s recommended surgery he definitely thinks that he can do it.
It’s so difficult to make a decision when you feel so foggy isn’t it? I struggle to choose which chocolate biscuit (so I invariably eat both). Some days I can’t even talk. These usually seem to be the days I have to talk to a consultant and they fire questions at me which I struggle to answer. My brain just doesn’t work.
And I know exactly what you mean about discussing with family and friends too. Mostly it’s just easier not to got there. I’d like to publish a list for friends of people who are unwell.
- Don’t ask if it’s stress or allergies
- Don’t suggest yoga, deep breathing, positive attitude or cold showers could cure all your problems
- Don’t ask if you have any exciting plans for the weekend
I don’t mean to sound harsh; I know most of them mean well but I’ve discovered over time the world is full of experts ready with unsolicited advice, mostly on pets, children, business and of course health.
Can I ask is this your image - I saved it but I’m not sure where it came from. If it yours can you tell me how you got the skull and other bones to disappear?
Also on the pressure yes I don’t think it always needs to be much. I noticed on one of the papers that the average pressure gradient at stenosis was 2.86 - mine was 2 which was reported to be mild.
Styloidogenic Jugular Venous Compression Syndrome: Clinical Features and Case Series (medtion.com)
The dogs are a real comfort yes but hard work sometimes. The huge golden retriever has a dodgy stomach so frequently leaves me correspondingly huge ‘gifts’, not a big deal under normal circumstances but bending over has become a big deal. (Sorry - too much info!!) There’s always some worry with them too. Earlier this week one of them ate a packet of After Eights. Cue massive rise in blood pressure and frantic calls to the vet. I used to cope with that sort of thing well and now I turn into a wreck! They are worth it all though - still the best things in life and they are such a comfort when humans just don’t cut it!
As you’re a cat person this is Kat. She turned up one day on our doorstep in a storm and never left.
She needs insulin injections twice a day as she is diabetic, but she keeps on purring. I know this isn’t a site for posting pet pics but I figure we need some light relief today.
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Thanks so much for your ‘point of view’. I’m going to take some time to read it carefully and the links as I’m really interested in this aspect.
Just found this in a paper written by Mr Axon and Dr Higgins -
“the styloid process is not necessarily elongated but is orientated in such a way that its proximal segment impresses on the jugular vein. This has a significant bearing on the styloidectomy procedure, itself, often necessitating resection of the styloid process right up to its point of insertion into the skull base. Between the two traditional surgical approaches, therefore, transoral and transcervical,18 20 21 which only allow access to its lower segments and leave a sizeable remnant behind, we have modified the transcervical approach to give sufficient exposure to the area of interest.”
An Evaluation of Styloidectomy as an Adjunct or Alternative to Jugular Stenting in Idiopathic Intracranial Hypertension and Disturbances of Cranial Venous Outflow (nih.gov)
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@DogLover thank you!!
I always wanted to figure out how to see a side view of my cat scan. Can’t believe it was as simple as clicking the button next to the 3D one
Here are some snapshots I took
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And no, I’m sorry, that isn’t my image. I would like to know how to change up my images to look like that too! I’ll play around on radiant and see if I can find it for you.
Thanks for your reassurance on the mastoids. I can see there is quite a bit more space looking from the axial image.
Thank you also for posting the study. I’m glad that they have modified the transcervical approach to get to the area they need to get at. Everyone’s anatomy is slightly different so modifications are super important.
I can just imagine the panic when finding out one of the dogs had just eaten a whole packet of after eights! This is the kind of stuff life throws at you when you’re in the dumps already. Exactly what you just don’t need. Just makes me laugh because I decided to eat a whole packet of after eights once, and my stomach definitely had something to say about it 
I hope your dog is ok. I know chocolate is a big no no.
It’s funny because I had the exact same ‘panic rush to the vets’ thing happen last week. My cat, Ed, suddenly couldn’t walk properly and was falling all over the place. The vet thinks it’s arthritis or a trapped nerve in his back so he’s ok. But I definitely can’t cope with stress at all. I was the most chilled out person prior to eagles. Now I have to take myself away if there’s any minor stress at all. Just makes my symptoms worse and I want to panic.
Do you find that the head pressure increases when you talk? It’s like it feels really hard to talk or project your voice. It’s easier to just stay quiet. Most of the pressure is right at the base of my skull.
And are you on blood thinners at all?
Kat is so cute! Ed was also a stray who was adamant that he was staying with us so we couldn’t say no 
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For whatever reason my images didn’t upload… I’ll try again
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I’ve got pretty much complete resolution yes, I only notice head pressure now if I’m really stressed, & when I did a long haul flight. I was very lucky, I had the worst side done first, & the symptoms eased alot within the first few days. But that does seem to be quite unusual, lots of members seem to have swelling which means recovery takes longer.
Mr Axon does generally remove the styloids back to skull base; he is a skull base surgeon so is very skilled, try not to worry- easier said than done though I know!
Loving all the cat & dog pics! They do give you extra worries though!
This is my girl, she’s really strange but we love her to bits! She’s a 3 month old little lab
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I want to come have doggie cuddles & kisses!! I used to be a dominantly cat person though I grew up in a house w/ everything from fur to feathers to scales. Things that slithered, crawled, were creepy, & those that were cuddly & cute. My mom had wanted to be a veterinarian, but as she was an only child of old school parents; they forbade it. She made up for it by taking in whatever came across our doorstep needing help (& some things that didn’t - they were kept for awhile to observe then released). I married a man who is horribly allergic to cats so moved my loyalty to dogs when we got ours. They’ve been gone for 10 years now, but I know we’ll have more someday. I will say I don’t miss the shedding & dog hair in every meal though!
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Dontgiveup ~
When we look at the scans & try to understand what those images reveal about the layout inside of us, our conclusions can be more bleak than the actual situation. Even the surgeons who do ES surgery find that to be true. Of course, the opposite can also happen - a benign looking situation via scan can be much more complicated once viewed in real time. I will say, that not overthinking the situation can sometimes be better than trying to run every possible scenario through your head. As you said, that tends to take you/us to dark places that don’t help & can actually harm our ability to make good decisions & move forward.
I’m sure Mr. Axon will be able to answer your questions, help calm your fears & won’t push you to have until you feel ready to go down that road. As Jules noted, he likely has more than one approach for this surgery based on what he thinks will provide the best outcome. I hope you’re able to have a conversation with him soon to address your questions & concerns & so you can feel more peaceful about whatever decision you make.
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You could not say no to Ed. He’s adorable.
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the kitty pics are so adorable! My daughter has 3 cats (my husband can’t be in the house very long) & two dogs. One of the cats has a purr so loud you can hear it two rooms away. The purr is a cat’s special gift that only makes them more wonderful!!
And yes, animal therapy is a positive note on here, even if off topic. 
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