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