New to this community but been having these symptoms for years. Sorry if my questions have already been answered. Feel free to link me to another post if need.
Diagnoses is severe compression of the internal jugular veins bilaterally at the level of C1 transverse processes caused by a combination of the transverse processes and the styloid process, persistent subluxation of C1/C2 and raised intercranial pressure.
I am hoping to get some recommendations for surgeons so I can get a second opinion. I live in Australia but am open to travelling if I need to although that would have its own challenges.
I am also feeling quite isolated with this and hope to find community of like minded people here.
In Australia the doctor that we know of doing styloidectomy, IJV compression and C1 shaves is 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(?) He works with with Dr Michael Halmagyi or Dr. Rao (Neurolosurgeons) and Dr Jeff Parker (Radiologist)]
•Dr. Prashanth Rao https://www.brainandspinesurgery.com.au
Apparently Dr Rodney Allan, neurosurgeon, Sydney, NSW, possibly does C1 process along with Prof Michael Elliott.
There have been quite a few discussions about surgery with Dr Elliott, here’s links to a couple, you can use the search function to look up more if you want:
I hope the names are helpful and you can get a referral…If you were going to consider travelling, quite a few members have seen Dr Aghayev in Turkey as he’s very experienced, he does online consultations for a reasonable cost:
I’m hanging in there… it seems all I’m doing at the moment is waiting…!
Bit of a slow process, I’m still waiting to see the referred interventional NeuroRadiologist to have the Venogram catheter to check the pressure gradients. Dr Rao is insistent that it’s needed even if I don’t want a stent. The earliest I could see him was mid-September, which in my mind is just delaying and delaying the decompression surgery.
Agreed! It’s very frustrating when it feels like doctors are just pushing the surgery date off by ordering imaging/tests that don’t seem necessary when the diagnostic imaging seems to show the full picture. Are there ever cancellation lists kept there that you could get on & potentially in earlier? I guess the good news is that we’re already approaching half way through August.
I’m sorry that there’s such a long delay, beyond frustrating when you’re feeling rubbish and have to jump through hoops before a doctor will agree to surgery… I’m sorry if we’ve talked about it before, but have you tried either the anti-coagulant medication like Plavix or Brilinta for venous compression, or there are supplements which some members have tried like Creatine, Trimetazidine & Citicoline? Sending you a hug
Good news today, I managed to have a telehealth with Dr Elliot and he agreed with me that decompression surgery should happen first, his logic is that even if the transverse sinus were opened up with a stent, the flow still has nowhere to go due to the jugular vein compression downstream. Makes perfect sense to me!!! He’ll chat to Dr Rao, and hopefully bring decompression surgery forward to about a month’s time, and skip the catheter venogram…!
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At least you can laugh about it. 
God is surely smiling on you!