Yes I have discussed all of those things with Dr Higgins and he could not see any evidence of them apart from the jugular compression.
Thanks Kooldude for that info - forewarned is forearmed! Do you know which muscle? This is the muscle which I think is involved in my compression, because when I put pressure on my back at the mid point, around T5 T6, I feel all sorts of sensations in my right jaw, head and up into my ear.
Cervical spine: Anatomy, ligaments, nerves and injury | Kenhub
@DogLover i am not sure which muscle but you can see the one attached to the C1 atlas in the picture you provided is definitely involved.
If you really want to know what you & @Dontgiveup will go through you need to read the following section in Dr Axon’s study in the research area (Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction). It details how Dr Axon does this operation and includes a number of muscles as well.
**Left Styloidectomy and C1 Transverse Process Resection**
Prior to the procedure, axial CT images were used to decide the extent of transverse process resection required to free the jugular vein from posterior compression, bearing in mind limitations imposed by the position of the vertebral artery as it passes through the transverse foramen ( Fig. 2B ). Reformatted images or trigonometrical calculations can be used to calculate the length of styloid that should be removed to achieve adequate anterior decompression.
The procedure was performed under general anesthesia with continuous intraoperative facial nerve monitoring. The patient was laid supine with the head slightly extended and turned away to the contralateral side. A postauricular incision was extended forward in front of the mastoid tip and then inferiorly into the neck avoiding the path of the marginal mandibular branch of the facial nerve. The anterior border of the sternocleidomastoid muscle was dissected free up to, and in front of, the mastoid tip. Further dissection medially through the deep cervical fascia toward the carotid sheath enabled identification of the posterior belly of the digastric. Palpation of the inferior wound identified the bony transverse process of the C1 vertebra and further dissection superoanteromedially, anterior to the posterior belly of the digastric, identified the body of the styloid process. The posterior belly of the digastric was drawn anteriorly and dissection continued posterior to the muscle until the prevertebral muscles were identified overlying the transverse process. Care was taken not to injure the internal jugular vein, which occasionally can be draped over these prevertebral muscles.
The prevertebral muscles were divided by sharp incision onto the bony transverse process, and the periosteum gently stripped from its tip. Malleable retractors were helpful in this regard. A 2-mm course cut diamond burr was used to gently create a hole that was then widened to enter the cancellous bone. This bone was easily drilled, thus gradually widening the aperture and keeping within the periosteal pocket, bearing in mind the anatomy in relation to the vertebral artery identified on prior CT.
Attention was then turned to the styloid. Blunt dissection toward the base of the styloid process above the inferior extent of the mastoid tip enabled an approximation of its origin. Two small malleable retractors were inserted in front and behind the styloid process, so giving secure anchorage to hold the soft tissue from its surface. A 2-mm course cut diamond burr was used gently to create a hole that was then widened in an anteroposterior direction to drill across its diameter. Bone bwas removed until its medial extent was egg shelled. At this point, the whole of the styloid process became mobile. A House Bone Curette was used to draw the base of the styloid process laterally until it could be safely held using a curved Spencer Wells forceps. An ophthalmic microsurgical blade was then used to gently strip the muscle attachments from its surface in an inferior direction while drawing the styloid superolaterally. The stylohyoid ligament was divided using scissors and the styloid process removed. At this point, the excised styloid measured 14 mm and compared with its preoperative length on CT imaging (19 mm) as described above. About 3 mL of residual styloid was still attached to the skull base after taking into account the 2-mm drill diameter. Malleable retractors were again used to hold soft tissue away from the styloid remnant, and this was drilled away to its base. Hemostasis was confirmed and a suction drain inserted. The wound was closed in layers.
He was nonspecifically unwell for 2 or 3 weeks following surgery, describing liquid sloshing around in his head with movement but gradually his headaches improved and within a month he was back at work. Follow-up MRI showed resolution of the subdural collections and restoration of normal brain anatomy ( Fig. 1C and andF ).F ). The CT venogram showed expansion of the left jugular vein into the space created by removal of the styloid and C1 transverse process ( Fig. 4B ), although there was some residual venous narrowing just below the skull base. The right internal jugular vei
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Hey Dog lover,
Scrambled eggs worked great for me! I hate to admit it, but I got Jimmy Dean Breakfast Bowls for meat lovers. They tasted good and only takes 2-3 minutes in the microwave! Didn’t have to hardy chew…goes down easy. My other favorite was macaroni & cheese. They both seemed to settle the stomach from pain meds and after surgery nausea. Not much tasted good but for some reason watermelon pieces tasted refreshing and they are soft. I went to a hair salon 4 days out to get my hair washed and it was a god send as I wasn’t up to trying to do it.
I dont recall if Dr. Axon gives out steroids for after surgery but this worked like a charm and kept my need for pain meds very low. I still use my wedge pillow as it does double duty for acid reflux. My 2 mini-doxie’s have taken a liking to the top of the wedge pillow since my ES surgeries so I made them a special bed up there behind my head. Dogs just know when their masters are not feeling well.
Im having oral surgery on St. Patricks day myself…Im nervous as hell because a tooth extraction last July set me back into major jaw pain…this after recovering from ES surgery in 4/19 and 12/20. The pain was so bad, I ended up in ER. I told my dentist, Id much prefer ES surgery over a tooth extraction! Pretty bad when you’d rather get your neck cut open than get a tooth extracted. You are in excellent hands and you will come out on the other side just fine. May the luck of the irish be with you on your surgery day! 
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So sorry that you’ve not seen improvements, really disappointing, I hope that the CTV shows something…thinking of you
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Mac cheese - good call! I’ve just ordered some ready made as I’m too tired to cook any more. Also just added water melon to the order - that sounds a real good idea too.
My dog had a big procedure on his neck a while ago so maybe I could pinch some of his steroids (jk), I’ve got my eye on his gabapentin too!
I have my wedge pillow ready and several dogs to choose from (an essential part of recovery). Many thanks for the reply & very best of luck for Thursday. I hope you have your steroids at the ready. 
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Hi M_UK,
I’m so sorry you’re still struggling w/ nasty vascular symptoms. It can take removal of both styloids for the symptoms to go completely away. I know you’ve read that here.
We hope when one side is opened up symptoms will decrease but sadly that’s not always the case.
I hope you don’t have to wait too long for the testing to see what’s going on. I still hope things improve for you. 
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I’m so sorry you’re facing more time in the dental chair, Snapple! I will pray for you on Thursday & going forward that you don’t experience anything close to the pain of last time around.
Hope your procedure goes well too 
They just cancelled my surgery!
Oh no, that’s so rough! 
Unfortunately typical NHS…plans on hold again for you, I hope that you get another date soon, sending you a really big hug
It’s not NHS - it’s Mr Axon. Not postponed- cancelled! He said the brachiocephalic was more to blame they thought and my symptoms were too varied. To say I’m devasted doesn’t begin to describe how I feel. He also said there wasn’t a doctor in the world who would operate on the brachiocephalic at the moment.
OMG! Im speechless. After you get over the trauma of another defeat…pick yourself back up and keep fighting to get the care you need. Gotta keep pounding on the door. Unfortunately the light at the end of the tunnel is just a bit farther away than you thought. Hang in there DogLover
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Thanks guys/girls.
Its just an implant. Im paying extra for an anesthesiologist because I was so traumatized by the extraction last year. I had a nice long chat with her and asked that they be gentle with my jaw as I think the extraction kicked up some bad TMJ and they may have over-extended my jaw. They say this is an easy procedure so I am hoping it goes well. I’ll be knocked out and I got some good pain killers all ready to go. I was thinking about asking for some prednisone… 
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@DogLover while I really sympathize with you and know how you feel at this moment ironically I happen to suspect that too as your IJV does not seem to be severely compressed by either the Styloid or the C1. This does not mean it is not compressed but not enough to cause the huge bulging collateral veins on the back and front of your neck. I am pretty sure based on the images I have seen that it is reflux from brachiocephalic more than the moderate compression of the Styloid and C1.
Please see this as a blessing in disguise as you have just avoided a surgery that could have ended up not improving your symptoms but might have even worsen your condition or introduce a new set of symptoms . If it was me I would have pursued brachiocephalic surgery wherever in the world that is done. Please don’t despair. You are in the right path to recovery. Dr Axon did not make this decision lightly I am pretty sure he looked at your scans and concluded that. The good news is you
know what problem is and I am pretty sure you will find a doctor that will be willing to do the
surgery
. I am praying for you.
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@DogLover one plausible reason why feel worse when you stand up could be due to the Central Compression AKA brachiocephalic compression where all collateral veins (vertebral veins ) drain to. Since the BE compression is so severe they can’t drain probably when upright and the blood refluxes back up and causing all kind of issues from dizziness to spinal compression (myelopathy). The other reason could be that standing up collapses the BE compression even more. I remember you told me when you raise your hands it gets better or worse can’t remember it very well. The images you showed from catheter angiogram shows total occlusion of the BE, I wonder what Higgins thought of that in terms of regurgitation of the blood back up to the brain and neck.
https://www.sciencedirect.com/topics/medicine-and-dentistry/brachiocephalic-vein
Tributaries draining into the brachiocephalic veins:
• The vertebral and first, posterior, intercostal veins are in the neck.
• Internal thoracic, thymic, and inferior thyroid veins are in the superior mediastinum.
•On the left, the superior intercostaly vein (which drains the second and third intercostal spaces) also drains into the left brachiocephalic vein.
In some aspects I agree with you. The brachiocephalic is contributing more as the pressure gradients there are higher (but not much) and I would have pursued this if it was an option. However, I have a a lot of tension and discomfort on the right of my face, neck, jaw, travelling up into my ear and mostly at the back of the throat exactly where the styloid/jugular is. The pulsatile tinnitus is in my right ear too. All I can say is I know I have symptoms related to the right side because I can feel it. It’s perfectly possible yes that this right side compression would be asymptomatic, without the build up of pressure from the left side too, but the right side is definitely impacting substantially and incidentally, has the far greater build up of collaterals. Put it like this, if Mr Axon was in my body I’m pretty confident he would have proceeded.
Also, he stated that there wasn’t a surgeon in the world who would operate on the brachiocephalic at the moment. So the option of reducing the pressure on the right may or not have helped, but I now have no other options.
Unfortunately, the team in the UK are under pressure recently to justify their procedures. Mr Axon said that he treats the styloid process and pulsatile tinnitus primarily and that the fact that I have no other options is unfortunately irrelevant. So I could have this operation if I had fewer and milder symptoms it seems, even with the associated risks, and it’s far less invasive/risky than a brachiocephalic by-pass even if it were an option.
Mr Axon didn’t look at the scans again - that’s not why he changed his mind. The group had another meeting this week, where one of them brought up the brachiocephalic and so he called me and asked which symptoms bothered me most. He had not associated me with the patient booked in for surgery privately on Thursday and was calling as a follow up to my cat venogram on the NHS. What happened is they had a meeting last month where I came up as a private patient and they agreed the surgery and then they had a meeting this month where I was discussed as an NHS patient. It seems I prioritised my symptoms in the wrong order this time and sadly it’s as simple as that. More recently Mr Axon is trying to concentrate on the pulsatile tinnitus, which although pretty constant, I’ve learnt to live with, so it was not a high priority for me. The ballooning of the right jugular vein also gave me relief of symptoms for about 10 days which they knew about. The ballooning of the left brachiocephalic did the same, so not markedly better. I understand their need to be cautious and follow a strict protocol and I don’t doubt Mr Axon’s compassion, but with my knowledge of my own symptoms and the alternatives available I think this was the wrong call.
I now have to start again looking abroad for someone to help.
I am so so sorry to read your post & can only guess how you must feel. I felt devastated for you when I read that your surgery has been cancelled. The one redeeming element is that Mr. Axon cared enough to explain how the decision came about rather than impersonally cancelling w/o explanation.
Is there any kind of an appeal process you could use to have Mr. Axon reconsider your case?
Dr. Hepworth in Denver, Colorado, would be a good doctor to start with though I hear he’s booked far in advance & isn’t taking new patients till May this year. We do have a member who flew from Europe for an appt w/ Dr. Hepworth earlier this year & felt it was money & time well spent. He will have to come back for surgery later this year.
Though my heart is sad for you, I concur with what @KoolDude said about you perhaps being saved from a worse situation by not having this surgery.
I will be praying for you to have peace & a good new medical resource to help you ASAP.
@DogLover I am devastated for you.
I second everything @Isaiah_40_31 says.
I understand that even if the brachiocephalic compression is a big contributor, you still have styloid related symptoms and if there was a chance it could relieve your suffering, even in the slightest, then you’d want to take it. The fact that ballooning the jugular vein helped you for 10 days is a sign that surgery would potentially help you.
@KoolDude might be right that this is a blessing in disguise. It feels the furthest thing away from a blessing but maybe the brachiocephalic needs to be tackled first? There must be someone out there doing brachiocephalic surgery. There’s a resolution out there so don’t give up hope.
Regardless, are you able to appeal so that they reconsider your case?
I’m really sorry.
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Whilst I really appreciate you all being so supportive this really isn’t helping and is making me feel much worse - it feels like talking to the consultants who aren’t listening again.
I know my own body and where I’m feeling discomfort and I know that I’m affected by the jugular vein. As I’ve said previously my symptoms were improved with jugular vein ballooning and there are currently no options for treating the brachiocephalic.
I have done extensive research, and already checked TOS and I understand my symptoms, scans and options better than anyone.
Furthermore, this wasn’t a decision Mr Axon came to after further analysis of my case and scans. I had already had my pre-operative assessment with him and had gone through symptoms and he had studied the scans carefully.
This call was a follow up to my NHS visit (I wasn’t expecting it to be Mr Axon) it was actually nothing to do with my surgery. I presumed, as it was an ‘Impact Assessment’ , it must be an opportunity for the ‘team’ at Cambridge to do research, as Dr Higgins had been so interested and open minded about the variety of symptoms. How wrong could I be! Mr Axon asked me which symptoms bother me most and I went through everything - all the random stuff that many of us experience.
About half way through he started to say that he specialised in Pulsatile Tinnitus & Eagle’s Syndrome and that as my pulsatile tinnitus was low down my list of concerns and my styloid was below 3cm that he wasn’t going to treat me. At this point I realised he had no idea that he was talking to someone he was supposedly doing surgery on in 2 days and pointed this out, He acknowledged this but reiterated that as my main symptoms weren’t PT or classic Eagles he couldn’t help. It was a complete 360 on what he has said before. The ‘team’ had looked at my case for surgery last month as a private patient and then looked at my case again this month as an NHS patient and this time one of them had ‘mentioned’ the brachiocephalic he said - so when the I had the Impact Assessment call from him (which had been booked in since January visit with Dr Higgins) he went through the whole procedure as if I was a new patient and he hadn’t spoken to me since July and basically I failed because I got the wrong end of the stick.
Someone I’ve been talking to on FB has had the exact same experience with him. She was booked in for her 2nd styloidectomy and it was cancelled last minute because she didn’t say PT was her main symptom. It seems that the NHS has decided a protocol and the only way they can continue to treat people is to follow it to the letter. Mr Axon also pointed out that I could come back after the surgery if it didn’t work and make a complaint. He said it had happened. He said that the fact that there was currently no treatment for the brachiocephalic could have no impact on his decision over the JV, which I find strange to say the least. He also said that they needed to exclude other things as I had so many symptoms. If this had been mentioned before I could have referred him to the 10 different consultants & multiple ‘normal’, brain, heart & neck MRIs that had already been done, which he has never asked for or seen, but with 2 days to go it was too late for this. I’m not sure I want to appeal this decision as I feel so let down by them to be honest and messed about that I’m loath to put my faith in them again.
Whilst I don’t doubt the integrity & skill of Mr Axon and told him so, I’m explaining this so other people don’t make the same mistake of putting all their eggs in one basket and also understand the complexities and pressures faced by the doctors offering treatment. I don’t think it’s easy for them either. Also that medical institutions have strict guidelines that can change, so options that were once available can become more restricted.
I’m looking for a silver lining and hope that maybe Mr Axon and this group aren’t right for me and I need a doctor more willing and able to push boundaries, so I’m not giving up. He said they only has 3 patients with brachiocephalic compression and I was the only one combined with JV compression so I suppose that makes things more difficult. Based on my scans, response to ballooning and personal experience of my symptoms it feels about 60% BV and 40% JV to me. I sure could have done with losing that 40%.
Thanks for all your support; you’re a lovely bunch, but unfortunately it’s not hitting the right note with me at this time. I know exactly what has happened and it’s very unfortunate, but maybe there’s a reason for it. I wish all of you the best and keep fighting as only you know what you’re experiencing so have the courage of your convictions.