Sarah Tee Posted March 23 Report Share Posted March 23 Folks, it’s finally happening. After two years of suggesting, cajoling, massaging, entreating and pestering my specialist to consider OCHOS and then to get me tested, he has finally made arrangements for me to have a transcranial Doppler ultrasound. The hospital that has the TCD set-up doesn’t have a tilt table (or can’t get the two together in one place?) so I’ll be doing a NASA lean test while being zapped with ultrasound. Also, for reasons I cannot fathom, as my response to medication rules out hypocapnia, I am to have my end-tidal CO2 measured. He says he wants to “diagnose me properly”, whatever that means. It has been six months since I took vasodilators, felt better and knew it had to be OCHOS. Six months of pestering, driving two hours and paying out AU$300 per appointment, reading everything Dr Novak has written on the topic, watching ultrasound technician videos, buying lottery tickets so I could fly to Boston to see Dr Novak, and worrying myself to distraction over getting this test. I’m already on the treatment for OCHOS (although it hasn’t been smooth sailing), but I need this test as proof, to have somethjng inarguable in my records, and to apply for government support if needed. It will be happening in the near future, no date yet, and I have to stop all medication for a week beforehand. Not looking forward to that! I don’t know what I will do if this test doesn’t show anything. I believe my hypothesis of OCHOS is correct, nothing else fits the evidence, I’ve studied this for two years, but the proof of the pudding will be in the ultrasound. Will report back when it’s all over! Hope you are all going okay and sorry I haven’t been visiting or posting lately. Sarah Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 23 Report Share Posted March 23 @Sarah TeeGreat job with being persistent advocating for your care. I really hope the test will give you the answers that you have been looking for a long time. Please post back as to your progress and results. we are pulling for you! Quote Link to comment Share on other sites More sharing options...
Water Lover Posted March 23 Report Share Posted March 23 @Sarah Tee I’m so happy for you that you are finally going to be able to get this testing! Congratulations for sticking with it and advocating for yourself. It shouldn’t be such an accomplishment, but I know it is. I’ll be really interested to hear about the results, whenever it happens. Quote Link to comment Share on other sites More sharing options...
GasconAlex Posted March 24 Report Share Posted March 24 Although not good to be ill, it would be great if you could get a definitive diagnosis with positive test results to back things up. Hoping you don't have too long to wait and the testing is successful (? not sure on correct adjective here, but you know what I mean) Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 24 Report Share Posted March 24 A well-earned congratulations, @Sarah Tee! I really hope this is a helpful step toward improving things for you. It is all so resonant for me, and inspiring too. I have developed what I am sure is intracranial hypertension alternating with a cranial leak of CSF fluid. I am confident that it is stenosis or impingement of my internal jugular veins, blocking the outflow of CSF. But of course you go to a doctor and tell them you have it all figured out? You ask for the tests that will either prove or disprove it all? No. Not likely. So I am in the early stages of trying to cajole and nudge various doctors into ordering the tests I need. Anyway--this is about celebrating that you got yours after loads of money spent and yards and yards of patience and strategic craftiness! We look forward to hearing what the tests show. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 1 Author Report Share Posted April 1 Thanks everyone for your kind words. The weather has cooled off a bit here so driving to Melbourne (nearby capital city) won’t be too hard. I am keen to get it done, and nervous in case it shows nothing … argh! Another factor to consider is that about 10% of people don’t have “windows” in their skull to allow transcranial scans. I could possibly still get it done on the carotid artery in the neck. Dr Novak uses the middle cerebral artery (inside the skull), Dr Visser uses the carotid artery. I don’t know why each has their preferance, but as Dr Novak described OCHOS I have suggested we follow his method. (The new gadget from Stat Health uses the first branch from the carotid artery because it handily passes behind the ear, an ideal knobbly spot to stick something on your head.) (Edited to fix typo) Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 1 Author Report Share Posted April 1 @Jyoti, I’m sorry you are having to go through this too. Words are failing me this evening. I do hope we will hear from you soon that someone is going to investigate. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 1 Author Report Share Posted April 1 Oh, of course I should add that DINET has been instrumental in all this. Thank you, DINET members and creators, past and present! Better get myself some dinner. Having a bit of a funny time with medication side effects lately but struggling on. Courage, everyone! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 16 Author Report Share Posted April 16 Two weeks have passed with no news on the date for my test. The stress of waiting to hear *whether* I can have it done has now given way to the stress of waiting to hear *when* I can have it done. Argh. Also I fear what ceasing all medications for two weeks prior is going to do to me and my household. Quote Link to comment Share on other sites More sharing options...
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