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...
Sarah Tee Posted June 1 Author Report Share Posted June 1 My specialist has said that the head of the testing unit will be contacting me soon to schedule the test. I am very glad I will get to speak to her in person, because he is still clueless about all this. The people at the testing unit have been very helpful, as far as I can tell. After I get my test done, I am going to encourage them to promote their TCD testing a little more, if they are interested. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted June 2 Author Report Share Posted June 2 There is still one hurdle: about 10% of people do not have thin places in their skulls for the TCD ultrasound to probe through. However, if I don’t have suitable “skull windows”, I should still be able to have a carotid scan, which works on everyone. Will be discussing with testing staff. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 1 Author Report Share Posted July 1 My test is booked for 25 July, a mere ten months after I first requested it. I will be doing a three-week medication washout. Not looking forward to that! The staff at the hospital seem good, but I am still concerned about my specialist being involved. I have to ascertain to what extent he will be interpreting the results, because I am afriad he will mess it up. Also, I do not know whether I will show a large enough drop in blood flow on doing a NASA lean test. My symptoms are closely linked to time of day, and although being upright makes them worse, lying down doesn’t really improve things. (Lying upside down does, but I doubt they’ll let me do that in the testing lab!) So I may need to have it done again, medicated, to show the difference. So complicated! Ten years ago, my symptoms resolved every afternoon at the same time, so I could have had the testing done morning and afternoon. Now my symptoms resolve around midnight, or not at all, so that opportunity is lost. Keep your fingers crossed for me! Quote Link to comment Share on other sites More sharing options...
bumpkin Posted July 1 Report Share Posted July 1 Good luck Sarah, don't be afraid to advocate for yourself if you think there's something they need to consider doing differently in your case to make it worth all the wait and the effort! Hopefully you get some answers out of this. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 7 Author Report Share Posted July 7 Thank you, @bumpkin. I hope I will be paving the way for other Aussies! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 7 Author Report Share Posted July 7 I’m starting my medication washout from tomorrow – reduce dosages and then cease OI medications for three weeks. Not looking forward to it. Have roasted a bunch of winter vegies and my dear dad will get me some Indian takeaway. Will sign off now until August, when I hope to report back, perhaps even with photos! Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 8 Report Share Posted July 8 @Sarah Tee Wishing you well, be safe! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 11 Author Report Share Posted July 11 Thank you, @Pistol, my dad is keeping an eye on me. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 26 Author Report Share Posted July 26 I hate to drag out this saga any more – even Vikings are getting tired! – but here goes … My specialist managed to sabotage the date I had booked in by not advising me on the washout period for my medications. (Or what is the word for sabotage that’s not intentional, but just ruining things by being sloppy?) And then telling me to fudge it. After a year of waiting! So I will be parting ways with him. This is a huge relief, although also quite stressful, and at one point I had to eat a packet of substandard supermarket lamingtons to calm my nerves. The good thing that has come from this is that my dad had a long talk to the manager of the unit that does the ultrasound testing. She was so sensible and helpful. The upshot is that there is a simpler option for testing that a GP can order and that should work for me. I am continuing the washout. Symptoms are creeping back. Four weeks seems to be recommended, and it will end up being longer than that. Better to be on the safe side. I want to feel as bad as possible for the test. After all this is over, I can take my choice of prednisone, nimodipine, LDN and hydroxychloroquine. Then I plan to have the test again while feeling as good as possible. Being descended from a line of Scottish blonds and redheads apparently makes me a Viking, so stay tuned for the next installment! Quote Link to comment Share on other sites More sharing options...
bumpkin Posted August 1 Report Share Posted August 1 On 7/26/2024 at 12:05 PM, Sarah Tee said: I am continuing the washout. Symptoms are creeping back. Four weeks seems to be recommended, and it will end up being longer than that. Better to be on the safe side. I want to feel as bad as possible for the test. After all this is over, I can take my choice of prednisone, nimodipine, LDN and hydroxychloroquine. Then I plan to have the test again while feeling as good as possible. That's really rotten that the specialist wasted your time and effort, some of them are not so considerate, but at least it sounds like you're on the right track now.. and for a condition that often makes it so difficult for us to think straight, it looks like you've actualy managed to get it all planned out very well, so that's good! Glad you have your dad to look out for you through it and help advocate. Keep hangin in there, it should all pay off in the end.. At this rate you'll definitely have a quality worst-case baseline to go into the test with, and then you'll be able to ease back into treatment to see what's having the most positive effect on your symptoms, so that should give some fresh insights too. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.