June 19, 2012 at 1:38 pm #232
I have CCSVI and recently had the ‘Haacke’ analysis of my blood and CSF flow. I have what I think are symptoms of Externally Communicating Enceph. They come and go. Pain at the base of my skull–like a band at the base of my skull, sometimes extreme vertigo that seems to go with this. I have normal MS unsteadiness, but with this, I can barely stand, it is so bad. My heart rate drops enough that emergency notices it. I have fatigue and pulsate tinnitus at times (right side). This seems to show externally communicating encephalitis. However, on my MRV from Haacke, the report says, “The ventricles and sulci are appropriate in appearance [for my age] . . . There is no mass effect or midline shift. There are no abnormal extra-axial fluid collections seen .
Does this mean I don’t have Externally Communicating Encephalitis? Can it come and go and therefore not show on the day of the MRV? Your response would be appreciated. I’m sure that you are busy.June 19, 2012 at 8:55 pm #2460
Oops. I meant hydroencephalus, not encephalitis.June 23, 2012 at 7:58 pm #2477tonkaduParticipant
Hi George, I’m not entirely familiar with the full Haacke protocol, but my wife has had similar protocols for flow mri/mrv/mra done at Stanford and the Hubbard Foundation in San Diego. She has CCSVI, pusilar tinnitus, pain at the base of the skull, and extreme vertigo just like you. Her heart rate also drops very low as well.
My experience has been that the docs we’ve seen are not really looking for external communicating hydrocephalus. My understanding is that ventricle enlargement would not necessarily occur in external communicating hydro since there is not an obstruction between the ventricles. My sense is that most docs looking at hydro stop once they see no evidence of ventricle enlargement. This is unfortunate since it could be adding to the number of undiagnosed patients with this health problem. In any case, I don’t think the Haacke protocol (or any of the ccsvi protocols) is focused on hydro, but more on CCSVI instead right? I suppose it’s going to pick up on it given how extensive the brain imaging is in it. However, you may be better off trying to find someone that could focus on that particular issue.
I know that in my wife’s case there appears to be extra fluid on top of the brain (to my eyes), however, no one has read the imaging in that way. I can tell you that a positive response to treatment with Diamox is considered by some to be an indication that hydrocephalus is present all by itself. Are you taking Diamox? She’s responded well to it, you might consider talking to you doc about it if you haven’t already.
I have read in places that normal pressure hydro can be episodic such that it may not show itself until a patient is lying down during bedtime at night. However, I’ve not heard of this in other forms of hydrocephalus. Good luck!June 24, 2012 at 5:30 pm #2480
Thanks for much for your reply. It is very helpful.June 25, 2012 at 7:11 pm #2485BarbaraParticipant
My experience has been that the docs we’ve seen are not really looking for external communicating hydrocephalus. My understanding is that ventricle enlargement would not necessarily occur in external communicating hydro since there is not an obstruction between the ventricles. My sense is that most docs looking at hydro stop once they see no evidence of ventricle enlargement. This is unfortunate since it could be adding to the number of undiagnosed patients with this health problem.
Where did you acquire your understanding from please ? Is it documented anywhere ?
Any ideas how can we change this, so the radiologists start to recognise it ?
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!
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