Hi, I was wondering if anyone here had their surgery without being 100% sure their diagnosis was correct but you undertook the surgery because it was your last hope of reprieve from symptoms.
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Hi, i think its important to be as sure as you can be about root cause(s) of your issues before surgery. But given limited level of imaging expertise and medical expertise in this area in many countries that is not easy to do. I wish Mr Hepworth was where I live.
Before spinal fusion for instability and being told my jvs were compressed at C1/styloid too, I did think about:-
-no operations- but things were just too bad to survive that way;
-correct order of operations, i see US medic group debated this. Not had any updates on this site I have read lately on that topic. For my part i decided to start ops in order medic wanted, tough it out as necessary and hope for improvement(s), then figure out what next;
-in my case getting jvs decompressed & styloids removed close enough to skull base has proved very difficult/impossible. I doubt left jv will get fully decompressed now. Right jv is decompressed now but after revision surgery
My operations have seen overall improvements. Instability was solved by fusion op & outcome good & ongoing.
Our bodies do adapt to cope after the operations but that takes time. It may grow collateral veins. Each of us may vary in how our body adapts to surgeries.
Its a decision only you can take, based on how your symptoms are & how well you can manage them.
Take care. D
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Hi I have followed your story on the forum.
What caused your instability?
I take it the NHS have been a joke looking after you and you had to pay out of pocket for most surgeries?
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@markp - I think most of us have our surgeries w/o being 100% sure that our styloids &/or calcified stylohyoid ligaments are the cause of some or all of our symptoms. As you noted, for some it was their last hope of reprieve from symptoms, for others, ES was more obviously the cause. Since you’ve been diagnosed w/ IJV being impinged upon by your styloid, it makes sense that would be at least a major contributor to your symptoms & getting it taken care of should give you at least some relief.
Please remember ES symptoms can take quite awhile (up to a year) to gradually disappear after the styloids are shortened & vascular tissues are decompressed. Recovery is an exercise in patience. I am glad you’ve decided to have surgery as I truly believe it will benefit you. Is Mr. Axon doing your surgery?
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Hello,
Another it was not Dr Axon who suggested the surgery. I am looking at two options in the UK and possibly abroad.
My only symptom is pulsatile tinnitus but the only abnormality the could find on CT was the ijv impingement.
Am MRA I had very recently had shown an aica loop on my right side, these can cause PT but mine is bilateral or even left dominating so they don’t think this is relevant.
I did consult Mr Axon but he said he does not think my pt is due to the jugular issue, and he advised against surgery. But after reading Patient’s story I am not sure about Dr Axon if I am honest. Patient has said that she did not find him particularly helpful and he did not propose surgery on her yet some surgeries have helped her. I think I may be in the same situation.
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That’s why you need multiple opinions and get as much diagnostic testing as possible.
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Hi Brandy, did you have surgery?
I did. Hepworth did surgery 2 months ago. I’m still struggling, but I have a lot of issues going on. Ruhoy told me I have a post exposure neuromuscular infection. I have mold toxicity, a B1 deficiency and my spine is a mess. My connective tissue is degrading and stem cells have been mentioned. I’m a mess. It’s hard to know what’s coming from what.
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@Brandy - I’m so sorry your surgery w/ Dr. Hepworth hasn’t helped resolve at least some of your symptoms. It is very tough when there are multiple problems & even more difficult to know in what order to take care of them. Are you considering having your other styloid resected & IJV decompressed? That could make more of a difference than it seems right now, but then I don’t know what other treatments have been advised for you.
Scary about your connective tissue degrading but good that stem cell therapy might be helpful in stopping it or putting it on hold.
Please keep us updated as to how you’re doing.
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I agree w/ @Brandy. You’re wise to keep searching for an answer. One doctor alone doesn’t know everything, & as you’ve seen on here, beyond what @PatientD told you, a doctor will decline to help one patient yet helps another w/ similar symptoms & causes. It’s can be very puzzling to try to figure out what criteria are used to make those decisions.
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Will do. It is very overwhelming. I appreciate all the support and well wishes…
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Sending you hugs, you’ve done so much research & testing , frustrating that the surgery hasn’t helped as much as you hoped 
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Thank you. It’s been a struggle.
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Hi. If your only symptom is the pulsatile tinnitus be sure to check out whooshers.com. It is a support group for PT. They have some PDFs that cover the most common causes, IJV compression is one, and how to work with Drs to figure our the central cause.
To answer your question though…I was like 80% confident before my surgery, but it was by far the best option and it worked out very well!
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Just came off a remote call with an EU based surgeon who confirmed the fact that I would need both styloid out and C1 shave, problem is he only does styloid removal and in his country there is only one hospital where a team can do both (neurosurgeon and ENT working together on eagles).
So, discounting Axon, who for whatever reason has decided that my jugulars are not compressed (three other doctors agree they are including vascular…), is there anyone in the UK that will do both procedures or at least C1? I’ve even read that Dr Timothy has no stopped doing C1…
@markp - Our member @NxJane just posted today that she saw a MaxilloFacial surgeon, Mr. Wilson who did her styloidectomy & IJV decompression some months ago & she’s had a very good outcome.
From her post:
Mr Ajay Wilson, Sunderland Royal Hospital
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It’s so frustrating that you can’t get help here; Mr Axon was the only doctor who we knew of who does C1 shaves as Mr Timothy is apparently no longer doing these…
I saw a documentary on experimental surgeries again recently and there were 2 skull based surgeons who seemed to be really skilled; I don’t know if they do a C1 shave but it might be worth maybe trying their private practice to ask?
Mr Richard Irving : Ear, nose and throat surgery
[Alessandro Paluzzi: Neurosurgeon in Birmingham]
(Alessandro Paluzzi: Neurosurgeon in Birmingham)
Those were the first links which came up for them so they might work with other medical companies, & they were both working at the Queen Elizabeth hospital in Birmingham, but I don’t know how up to date the programme was…
Otherwise all I can suggest is that you do a google search for spinal surgeons in the UK and ring round some of them? I’m sorry, I wish we could give you answers, members in other countries have these issues too, that’s why some end up flying to other countries for surgery 
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I have had other consultations with doctors.
To recap, my compression is caused by the internal carotid artery which is pressing the jugular between the styloid and the C1 vertebra.
One doctor has proposed ‘experimental’ surgery which involves moving the carotid artery and ‘repositioning’ it against the styloid, ‘perhaps’ by stitching it to the styloid process and shaving of C1. This is something this doctor has not done before.
The other surgery proposed by the other doctor is the classic removal of the styloid and c1 shave. This should reduce the compression and help reduce my pt.
So as you can see two very different ways of dealing with the problem and a difficult decision for me to make…to go with experimental surgery or the classic approach.
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That is a tricky decision! My gut feeling would be that if they styloid’s removed at the same time it does give a bit more space in the area rather than attaching the IJV to it but obviously you’ve talked to the doctors & have been able to ask them questions…
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Hi all, it looks like my time has come. I will be having surgery in the UK in a couple of weeks, at my cost as I cannot wait for the NHS. Some of you will recall some of my posts on here and others have heard from me privately.
I am really scared about the surgery, particularly in terms of the aftermath.
I will prepare with ice packs and the v-shaped pillow some of you have suggested. Worringly the surgeon tells me I should not need more than tylenol for pain management. I have read this seems to be an issue for some after surgey, namely getting proper pain medication. UK doctors have an issue with prescribing strong pain medication and I cannot get my head round why this is the case. I guess there is a misuse issue in the country but we should not all have to suffer because of people who break the law.
I will be spending two nights in hospital. After that I will have to travel by train 2 hours away so I think I will add another two nights in a hotel. Hopefully I will be fit to travel after that.
I will not post the names of the surgeons until I have had the procedure and I am happy I have been looked after properly before potentially advertising their names. I will have an experienced ENT and a Neurosurgeon doing the op which includes styloidectomy and C1 shave.
I hope the surgery cracks my PT which is killing me.
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