This Is MS Multiple Sclerosis Community: Knowledge & Support

How much of a misnomer is NPH? Do we have a reliable accurate method of measuring CSF pressure? How the pardon-my-expletives do we know what normal CSF pressure is? What if "MS" is caused by intermittent, transient pulses of high ventricular pressure that is relieved both by shunting and by de-stenosis in the jugulars? We need less invasive, less painful and more real-time ways to measure cerebral fluid pressure in the human body. No wonder plethysmography is not taken seriously. This is 2012! Can't somebody get Heisenberg out of the loop? Do our MRI inventors have any ideas?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I think that might be premature. Valsalva may muddy the water, but if it induces backward flow, in CCSVI it might only be making things worse than they already are. The point being that just because they used Valsalva to test for NPH, and Zamboni said not to use it in Doppler CCSVI tests doesn't mean that a) it doesn't test just as well for CCSVI retrograde flow and b) the retrograde flow isn't present in the same way in both conditions. We have been shunting hydrocephalus since 1964. Maybe it would also be a good thing for "MS". The shunt my brother had was in his jugular.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Agree--one eye, valsalva may muddy the water, but I wanted to make mention to be clear about differences in CCSVI Syndrome as discovered by Dr. Zamboni.

Here's another paper on hydrocephalus found in MS-- two cases, not just one.


http://www.ncbi.nlm.nih.gov/pubmed/7712624

One eye brings up a VERY important point. It is currently not easy to tell the difference between brain atrophy and hydrocephalus on MRI. In both images, the brain appears smaller and the fluid fills in the "empty" space. Nature abhors a vacuum. The only way these docs could guess that this might be NPH was to note the symptoms of NPH, which are 1. gait disturbance 2. progressive dementia 3. urinary incontinence.

And, as I posted in research today back on page 6, CSF markers for NPH look alot like MS, because they have MBP markers, and show demyelination.

MS/CCSVI and NPH share
periventricular white matter lesions
Myelin Basic Protein in CSF
Progressive neurological symptoms
dilated ventricles which signal pseudo atrophy/brain atrophy on MRI
retrograde blood flow in jugular veins

one eye and his brother may be more similar than their docs would think.....

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

My father had "gait disturbance", and what they called "peripheral neuropathy", which they put down to the effects of his late-onset diabetes, which one prominent neurologist told me is "not auto-immune" (BTW my "MS" came after I was 40). I wonder if Bill and I got it from *his* genes. I wonder if he had "MS". There certainly is a lot of "auto-immunity" in my family. If I didn't know better, I would almost call it self-loathing. But we came from Detroit, and thanks to Henry Ford, most of us ended up with Auto Immunity. My dad drove a Peugeot. After a brief bout of Volkswagens, I have driven mostly Japanese cars. Guess WWII had some effect on me.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I'm sure I have lots of "brain atrophy" by now, but my diagnosis was based on an MRI report that said I had an "atrophic" corpus callosum.

I have seen on MRIs that victims of "high pressure" hydrocephalus can have ventricles so expanded that their brains look like they have only grown in a thin layer on the inside of their skulls. Does anyone know if ventricular expansion can cause the corpus callosum to look like it has atrophied?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Well it looks like the corpus callosum is right next to the ventriculus tertius. Would that be the 3rd ventricle which is usually the expanded one in MS?!

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Third ventricle, eh? "Curiouser and curiouser!"

Does anyone who has the ear of somebodies like Dr. Dake or Dr. Hubbard want to pursue this and see if we can get someone who is In The Book interested in these speculations? I might even be able to find them a Suitable Guinea Pig...

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Huh, that is interesting. It's similar to the transient global amnesia group that had deficient jugular valves, with a valsalva event noted shortly before onset of amnesia. Retrograde jugular venous flow for any reason, whether stenosed valves or the condition of excessive retrograde flow upon valsalva, may be not good for our brains.

You got it, Gibbs---the third ventricle is the one Eliot Frohman mentioned back in '09, the one next to the corpus callosum, and the one implicated in MS and NPH.
NPH is related to corpus collosum abnormalities, one eye----
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077766/



Wanted you to know, the docs are looking into this, especially in relation to CSF disturbances shown on FONAR...CCSVI Alliance has been working to put the researchers together.

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheerleader, knowing what you do would you suggest to love ones or friends with Parkinson's that they get a Haacke protocol fMRI scan?

I keep hearing on this site little mentions about folks with Parkinson's being helped by PTA (Dr. Arata comes to mind) and other posts.

Just curious about your opinion on this.

Thanks in advance....

I can't help thinking there must be a connection with the newly-discovered "glymphatic" clearance system. Didn't someone mention drainage of alzheimers-related molecules by this system?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Rogan-- I'd recommended either Haacke protocol or Dr. Scott Rosa's FONAR study (which I think is full at this point) CCSVI Alliance has facilitated conversations between these doctors, and they are comparing notes. Please realize that this is all hypothetical at this point, clinical trials are just underway. Haacke was noting venous sinus compression (also indicative of IHH) in people with Parkinson's. We just don't know how venoplasty and/or atlas treatment will work in the long run, and I'd hate to have people getting hopes raised or spending money for venoplasty treatment before more is understood. Please read from the beginning of this thread and see that this discussion was started in '09 to try and figure out restenosis in a gentleman who is now suing Dr. Dake for failed venoplasty. Sometimes early adapters are hurt, and I do NOT want to be suggesting any treatment which is not understood yet. Suffice it to say, something is going on with cerebrospinal fluid stasis, but it's still being elucidated.

One eye--there may very well be a connection with the U of R discovery of the "glymphatic system" and neurodegenerative disease- I believe MS should be added to the list they have here. Yes, this system is thought to clear waste products, like the excess proteins found in Alzheimer's plaques. It also brings nutrients to brain tissue via diffusion.

http://www.urmc.rochester.edu/news/stor ... fm?id=3584
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheerleader, thanks for the balanced advice.

Let's hope these amazing doctors and researchers can shed some new light on these horrible degenerative diseases. The drug establishment hasn't led us very far in understanding the disease process for Alzheimer’s or Parkinson's. Do you know why drug company employee's aren't required to take the Hippocratic Oath?

Knowing that the brain is a liquid and not the spongy organ you see in lab jars has always made me think any sort of fluid mechanics dealing with the brain must be very important to a liquid organ.

Anyhow, what is IHH?

And is Dr. Flanagan, the Upright Doc, a part of the CCSVI Alliance's Science Advisory Board?

I have just purchased his book The Downside of Upright Posture. We are so lucky here at TIMS to have his input. From the looks of his website he has been concerned about CSF and blood flow to the brain for quite some time. His thoughts on NPH and Parkinson's are fascinating to say the least.

http://www.upright-health.com/parkinsons.html

Rogan-
oops...meant IIH---idiopathic intracranial hypertension.

http://www.hopkinsmedicine.org/neurolog ... n_iih.html

My husband isn't a gal, and isn't overweight, but he had pulsatile tinnitus (he could hear his blood whoosh in his ear) and headaches, and lost his peripheral vision as a kid due to drusen (fatty deposits on the optic disc) and optic disc pressure. A brain tumor was ruled out when he was a kid, and the docs just said, it's your drusen. He got an MS diagnosis three decades later. Strangely enough, the whooshing and headaches stopped when he had a high stent put in his jugular at Stanford...and endovascular stenting is an accepted procedure for IIH in a stenosed dural sinus.
http://www.ncbi.nlm.nih.gov/pubmed/19877792
http://www.ncbi.nlm.nih.gov/pubmed/18285539
http://www.ajnr.org/content/32/8/1408.full
this is all just hypothesizing. He was never diagnosed with IIH, but it is interesting.

Agree with you about Dr. Flanagan, and have read his book and online site. He's brilliant. The Alliance hasn't announced our scientific board, but we've been working really hard to get these doctors in dialogue with each other.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

All these things seem related. CSF pressure (how is production and absorption accomplished?), arterial pressure, venous pressure. No wonder an ACE inhibitor can have some effect.

What is the "normal" CSF pressure? How is it regulated?

Brains are the only thing not liquid in your head. That's why sometimes they give the appearance of atrophy: brains are compressible, whereas the liquids in your skull, like CSF, arterial, and venous blood, are not. That means, when these fluids are completely surrounded by bone, they have as much give as granite. The other "matter" in your head is softer than granite, and so it compresses and becomes smaller when the liquids exhibit too much pressure. The ventricles might even tear and leak if there is high enough pressure in them. Is there a good non-invasive way to measure instantaneous pressure? Seems to me ultrasound might accomplish this, if pressure affects the propagation of the sound waves. Would have to be a very sensitive and well calibrated instrument.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience