Thanks so much for adding me to the group…I have had health issues most of my life…a blood clot in my jugular 9 years ago that went unexplained…diagnosed a year later with young onset Parkinson’s disease which is now being reassessed…After a hospital visit for severe pressure headache the radiologist found my right jugular is nearly completely compressed and another hospital visit over the weekend found the left side is also compressed, no comment of elongated styloid and I do have some spinal issues in that area so Im interested in info about CCI…Im waiting for surgeons to assess my scans.I am in Australia and nobody seems to know anything about it at all…help
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Hi Layla, and welcome !
I’m so sorry that you’ve had these issues for a while…are they re-evaluating the Parkinsons diagnosis thinking that Intracranial Hypertension symptoms might be causing this instead?
There are some doctors on the list who have done ES surgeries recently, together maybe, & a C1 shave, I don’t know if you’re able to get a referral there:
A/Prof Michael Elliott, ENT, Unit 211/300 Pacific Hwy, Crows Nest NSW 2065.
ph# +61 2 8355 7940 [Operates at Royal Prince Alfred Hospital/ or Concord/ or privately at The Mater(?) with Dr Michael Halmagyi (Neurologist) and Dr Jeff Parker (Radiologist)]
Dr. Prashanth Rao https://www.brainandspinesurgery.com.au (operated w/ Prof. Michael Elliott on one member who needed a C-1 shave for IJV decompression)
Dr Rodney Allan, neurosurgeon, Sydney, NSW, (Possibly does C1 process along with Prof Michael Elliott
There have been discussions about CCI, there is a link with ES we think as lots of members have been diagnosed with both- have you been diagnosed, or is it something you’re suspecting? You can do a search of the discussions for more info, if you’ve not been diagnosed, @PatientD gave some info for a quick self assessment:
‘On instability topic, here are my practical tests to check yourself. Look in mirror - is your head slightly tilted to one side, is one shoulder higher than the other, if so is the hip higher on one side than other (put hands on hips), is one leg slightly shorter than other - get friend or family to help - wear flat shoes - lie flat- have companion put your heels together. If one heel is slightly shorter than other they can see that & tell you. If you have many of these characteristics this may suggest you have instability issue. Our brains keep our eyes even with the horizon & will alter body below in order to do that.’
Have you been put on blood thinners at all? Some members have been prescribed Plavix or Brilinta to help with symptoms from IJV compression, & if you’re not already, sleeping propped up can help a bit.
Hope this helps & that you’re able to get some treatment soon 
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