Recent Diagnosis

Thank you for letting me join your forum. I’ve already found it extremely informative.

My journey started almost a decade ago. I’d had pain in my right shoulder and then after a virus I developed dizziness. It was not vertigo but rather a pressure in my head that made me feel unbalanced/disorientated. Over the next year I saw ENT consultants and neurologists but no-one could work out what was wrong with me, so I tried to carry on with life the best I could.

A few years later I was on a business trip in Japan when I blacked out. I got myself back to the UK but I was extremely fatigued and I had a myriad of other autonomic symptoms. 6 months later a consultant diagnosed me with chronic fatigue syndrome.

Now with young children I battled on and got myself back to full time work 18 months later. The symptoms were still there but I coped reasonably well for 3.5 years. During this time I also picked up a sleep apnea diagnosis. Then at the beginning of 2019 I crashed again after a stomach bug. Again I saw numerous doctors and was diagnosed with IBS. I tried to carry on working but had to stop in May as I could no longer sleep and I was loosing weight rapidly (lost 15kg in 6 weeks) along with all the previous symptoms.

Out of work I had little choice but to plough my limited energy and resources into trying to work out what was really going on with me. I searched for all the latest information on chronic fatigue syndrome and discovered more links to structural issues than I had found before. I started having private scans and consulting with doctors from all over Europe.

In the last 6 months I have picked up diagnoses of Atlantoaxial and craniocervical instability, hindbrain herniation, occult tethered cord syndrome, cervical disc stenosis, lumbar disc herniation and now jugular compression (between C1 and styloid). Ironically up until this point I had been told that essentially there is nothing wrong with me structurally!

Following a CT venogram a doctor called Dr Higgins in Cambridge has recommended removal of my styloid and the lateral mass of C1 on the right side and I’ve been referred to Mr Axon. I also have doctors lined up to section my filum terminale, do an artificial disc replacement at C4-5 and fuse my cranio-cervical joint.

So at the moment I’m just trying to work out the best order to attack everything and do my research on the best surgery/treatment for each of these things. I live in the UK and have had to do all of these investigations privately. My GP is very supportive but hasn’t been able to refer me on the NHS until now. However I’m now seeing Mr Axon, Cambridge and Mr Buxton, Walton Centre on the NHS as I now have evidence that cannot be easily refuted.

So this is where I’m at. My most debilitating symptoms are dizziness, fatigue, right sided neck/arm/shoulder pain, headaches. I don’t know what the outcome will be but it certainly seems to me that treating the jugular compression is a good next step. I’ve included a 3D render of my CT venogram which shows the jugular compression quite well and also the collateral vein formation as I guess my body has tried to compensate over the years. I realize I’ve not explained everything fully but I’ve tried to be concise so as not to bore everyone.

I’m sure I’ll be asking lots of questions over the coming days!

Thanks again

3D CT head & neck.pdf (458.5 KB)

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I haven’t experience with all the conditions you’ve been diagnosed with, but did have bilateral jugular compression. The increased pressure in the brain this can cause (intracranial hypertension) can cause dizziness, brain fog, and tiredness amongst other symptoms. The neck pain can be down to ES but could be the disc problem, the arm & shoulder pain could possibly be from irritation of the accessory nerve by styloids, but equally could be down to the disc problem.
Obviously you’ll have to see what Mr Axon says, but the scans clearly show compressed jugular veins, you have symptoms which that can cause, so it would seem a good idea to get them removed. The waiting list can be quite long for Mr Axon, so the sooner you get on that the better!
It’s hard to say until surgery which symptoms will improve, but usually with vascular ES you do see improvements quite soon.
There’s a current post by kiZe6159 about other neck surgery vs ES surgery, you might find her story interesting. (Cervical surgery vs ES surgery; which came first)

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Jules thank you for your response. The more I read on this site the more I am inclined to do the ES surgery first as so many things are resonating with me. Ultimately I won’t know for sure what is the cause of the symptoms until I try the interventions. Am hoping seeing Mr Axon will give me the confidence to proceed. Have you heard of anyone requiring a venoplasty or stent after the styloid removal, to open up the jugular? There is a chance I have a thrombosis in my sigmoid sinus slightly upstream of the compression site and I’m assuming until that is cleared out things won’t flow properly. Again am hoping Mr Axon can clarify this.

One member had stenting done without the styloids being removed, it did work for him!
There’s a current discussion you might find interesting:

And an older one with some links:

If you search ‘venoplasty’, it’s come up with several quite old discussions too.

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Thanks Jules. That is excellent information. Without seeing Mr Axon, I’m thinking styloidectomy first (possibly with removal of C1 lateral mass) and then venoplasty/stent afterwards if necessary. Of course I’ll be guided by Mr Axon. I have an appointment with the Walton Centre coming up in a few weeks. It will be interesting what they make of all this…

Also I’ve now produced a coronal cross section which shows the length and position of the styloids in that plane more clearly.Styloids

My, they look long, very impressive! Definitely need to come out! :+1:

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I agree w/ Jules. They do look very long! Getting those removed should help you feel much better!

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Thank you both. I have managed to get referred to Mr Axon on the NHS but the initial appointment is not until June. Therefore I’ve decided to see him privately, at least initially, and that appt is tomorrow! I’ll report back shortly.

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Very quick, hope you get on okay & look forward to hearing about it!

Went to see Mr Axon yesterday and was able to establish a clearer route forward. From the CTV he believes it will be important to remove the transverse process/lateral mass of C1 as well as the styloid on the right hand side as he actually thinks C1 is restricting the jugular flow more than the styloid. It sounds like they have to operate within strict guidelines. If he’s just removing the styloid then I got the impression he could proceed straight to the surgery. However to remove the C1 lateral mass/transverse process there has to have been a catheter venogram to show the pressure drop throughout the jugular.

Now I have been referred to Mr Axon through the NHS but he informed me there would be an approximate 40 week wait from where I am now to having the surgery (at this stage he only wants to do the right hand side).

Therefore I am between a rock and a hard place (much like my jugular) on whether to wait or take the financial hit and go private. Either way the next step is getting the catheter venogram back with Dr Higgins.

M_UK ~ How frustrating! That is a tough decision to make. Your situation sounds grave enough, it might be worth the financial investment for your health’s sake. Waiting almost a year for surgery might be very difficult w/ the situation you/your jugular vein is dealing with.

I love your comment about being between a rock & a hard place (much like my jugular). You have a good sense of humor. Let that help carry you as you deal with this health challenge. Everything is better when we can laugh!

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That’s a shame that it’s not just the styloid but cervical vertebra as well, makes it more complicated but it’s important to get it right. I haven’t got a clue how much it would all cost to go private, infuriating that you’re faced with either that or a 40 week wait, especially as you’ve already forked out quite a bit…glad that you at least have answers, thinking of you.

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Thank you both for your replies. It is a frustrating position that is somewhat unique to living in the UK. The state of our NHS means the waiting times for many procedures are massive. However because we have the NHS it is pretty much impossible to get medical insurance for pre-existing conditions. Therefore to get timely treatment you are left to pay for it yourself. As I’m unable to work currently the best decision financially is probably to go private. Anyway I will continue to take one step at a time and trust in God’s provision.

I’ll pray for you too. Very tough to have such a long wait- I was lucky with my first surgery that it can just before the 2015 general election & the waiting times were a big political issue, so Addenbrooks sourced out some operations to the Spire hospital to get them done quicker, I was lucky enough to get my 1st side done there! There was over a year between that & the 2nd surgery though!

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Hi M_UK ~

In the US most doctors’ offices keep a “cancellation list” of people who want to get in sooner than scheduled. Thus, in the event that someone cancels an appt., someone from the cancellation list is offered that spot. I don’t know if that is something done in the UK, but it would be worth asking about.

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