Which specialist can look at cerebral blood flow?

[Sarah Tee]

I’m going to see my autonomic specialist tomorrow. I have realised that it is probably beyond him to organise for me to have a transcranial Doppler ultrasound (TCD). It is available in a hospital in the capital city near me, but no-one uses it for autonomic testing yet, and I don’t think my specialist is up to the task of getting them to do it.

So what kind of “normal” specialist would investigate cerebral blood flow?

(By the way, my blood flow seems to be reduced even when I’m lying down, judging by my symptoms. It seems to be more to do with time of day than horizontal/vertical, although I do of course feel worse if I stand in a queue or something like that. So I don’t necessarily need it measured during a TTT.)

[MikeO]

10 hours ago, Sarah Tee said:

I’m going to see my autonomic specialist tomorrow. I have realised that it is probably beyond him to organise for me to have a transcranial Doppler ultrasound (TCD). It is available in a hospital in the capital city near me, but no-one uses it for autonomic testing yet, and I don’t think my specialist is up to the task of getting them to do it.

So what kind of “normal” specialist would investigate cerebral blood flow?

(By the way, my blood flow seems to be reduced even when I’m lying down, judging by my symptoms. It seems to be more to do with time of day than horizontal/vertical, although I do of course feel worse if I stand in a queue or something like that. So I don’t necessarily need it measured during a TTT.)

I would think that a neurosurgeon could look at this but don't quote me. i also get a feeling one would need some sort of pre-diagnosis to be seen.

[Sarah Tee]

@MikeO, thank you for the suggestion. Am taking my dad with me to appointment. Hope he can get something sorted out for me.

Recent events have made me realise that my position is precarious. I am wishing now that I had stayed with my old specialist. This new one was trained by the old one, but the new one doesn’t have his own rooms, can’t phone us or contact us quickly for urgent matters, and doesn’t have any back-up.

I feel I am stuck with the new one, because my old specialist now has a two-year wait time. I only changed because the new one was seeing patients in a nearby town once a month, saving me a two-hour trip to Capital City.

[GasconAlex]

I would not  hold out much hope on neurosurgery helping out.  The last one I saw said he could only help on major defects that show up on images.

Otherwise he redirected me to neurology who do use tests to justify problems but in my experience are difficult to get to do  anything unless you have an obvious and simple  problem.

Neurology here does a full range of autonomic testing but is most focused on the severe forms so other than  noting that your results are not normal they don't then follow up on them.

Sorry to be less than helpful and I hope you get something positive from your appointment.

[Sarah Tee]

@GasconAlex, it’s all about passing the buck, isn’t it.

I have briefed my dad on it all and he is taking over running my appointments. Hope he can spur someone into some kind of action.

[Sarah Tee]

The frustrating thing is, there’s a transcranial Doppler (TCD) set-up in a hospital in my near-ish capital city. All it needs is for an autonomic specialist to call the head of the testing dept, schmooze them a bit, make a case for how great measuring cerebral blood flow velocity in patients with dysautonomia would be, and direct them to Dr Novak’s publications, which seem to have a lot of technical detail.

They could even contact Dr Novak. He mentors people already through a Dysautonomia International program/grant to set up TCD for autonomic testing.

Sadly my specialist is not dynamic enough for any of that, although he does sometimes do unexpected things, like the time he organised albumin infusions on very little evidence. So you never know!