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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Just wondering, do we know if anyone has been diagnosed with AAI but not CCI?
Does he does the prescription before you see him? I am having issues getting a prescriptionHenderson has you get upright flexion extension mri, rotational ct, lumbar mri, and a urodynamic study to get an appt.
GReat explanation, is this laying down or has to be upright? I cannot find a close upright MRI place near me.when I went to get the rotational ct,
GReat explanation, is this laying down or has to be upright? I cannot find a close upright MRI place near me.
Another questions, the guys that have been diagnosed, when you move your neck, does it do a rice crispies sound, like cracking little things noise?
When I spoke to Dr G and brought up the fact that I have no numbness or headaches or upper body symptoms other than severe brain fog and fatigue, he recommended i get a cervical venogram. Maybe he thinks i am just not getting enough blood flow to the brain...
ohhh great that you found a place to give you a similar test.I am also getting a venogram on the advice of Dr G - he now requires it on all patients before surgery as a few people recently have turned out to have venous obstruction additionally. I had the MRA when I was there in Barcelona, it wasn't a requirement at the time, I asked for it in view of my cerebral hypoperfusion (it was normal).
I struggled to find a self referral place offering 3t for MR venogram but am now getting a CT head and neck venogram with Dr Higgins in Cambridge, UK, which Dr G also accepts.
I do have splitting headaches which I attribute to cerebral hypoperfusion, but I don't have any focal neuro symptoms.
B xxx
you said you had an MRI in barcelona so why do you need a new CT venogram?
you saw Dr. G but did not have surgery yet, is that correct? sorry memory...
xo
but i thought MRA was the same thing as a venogram...i thought they automatically look at all the vessels and give you gandolinium and all that. maybe i am confused lolI only had MR Angiogram in Barcelone, to look at the arteries. I did not think (nor was I advised) to have the veins done too. I wish I had done now, it would have been cheaper, easier, avoided CT radiation and if I do have outflow obstruction, would have identified it sooner.
I went to see Dr G but have not had surgery, am still considering.
B xxx
but i thought MRA was the same thing as a venogram...i thought they automatically look at all the vessels and give you gandolinium and all that. maybe i am confused lol
ever think of trying stem cells?
u can go to colorado and get them. that is what i am doing next month. but only because i cannot afford surgeryYes they can do both at the same time, but I only requested and paid for the angiogram at the time(MRA). That just looks at the arteries. The venogram (MRV) looks at the veins. It probably wouldn't have cost that much extra to do it in one procedure & I wish I had now.
No, I just do not think there is evidence for stem cells if the problem is your skull sinking down, & it is not something I have access to anyway.
How about you?
B xxx
u can go to colorado and get them. that is what i am doing next month. but only because i cannot afford surgery
i think this will explain:I could not travel to Colorado but I would be really interested to hear how it works out for you! How is the treatment done?
B xxx
Henderson has you get upright flexion extension mri, rotational ct, lumbar mri, and a urodynamic study to get an appt.