This Is MS Multiple Sclerosis Community: Knowledge & Support

Thanks Dr,
it is a good sobering reminder for me to hear your words.

Its too easy to live in hope and then move to the next branch of hope without learning the finer points of a process of fact finding, technique refining and longevity of outcomes.

Thank You everyone and may your God go with you.

Compliments of the season,
Nigel

From my first read, it was disappointing to read that the damadian group rejected, as controls, patients with abnormal spines without ms features. So they did not control for the variable they were studying. So we do not know whether the CSF flow disturbance was more common in patients with MS than with others with a history of whiplash injury, vigorous dancing or hammers landing on the head. we only know that patients with MS commonly had spinal abnormalities and that patients with MS have slowed CSF flow.

We also know that drainage of CSF out of the brain is via the pacchionian granulations into the dural sinuses which are drained by the jugular veins. Damadian also found it surprising that CSF drainage was diminished in the erect position. But since we know that, in both MS patients and controls, jugular vein flow is diminished in the upright position while cerebral blood flow is unchanged, one could argue that Damadian and Chu are showing that altered venous outflow of the jugular veins is a significant factor in diminished CSF flow.

Nice first attempt. For your information, group, i reached out to Ray Damadian to evaluate CSF flow before and after treatment of venous obstructions. He was interested in spinal alignment not venous abnormalities at the time.

Thanks

DrS

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

It's always what we don't know that is important!

I guess that is why PwMS pester the shit out of people like you Sal!

So much research is about perspective of the Observers, if they are blind and unthinking or biased to have their outcome or idea 'seen', then alas the 'Science' goes out the window.
The more minds that can view the research results and look from all angles the better. Therefore I see what you are saying about 'Peer Review' as opposed to 'Patient Hopes'.

On FB I have hounded Mike Arata to let us see his Research Results so that Open Minds can view from all prospectives.

NO REPLY what so ever to multiple requests to him, I could assume from that ............... but its best I don't and push from a different angle and see what can happen.

Closed Minds and Greed are our Greatest Enemy in any walk of Life, not just with CCSVI learnings!

Thanks for the Balance of your approach Sal, it is important to show the full picture, and the behind the senses play is often as ground breaking as the play in Public!

Keep Smilin', I am,
Nigel

And that makes me consider: if patients with NPH have similar symptoms to those with "MS", is it possible that those shared symptoms are those which depend on the CSF flow, and improving the jugular flow has the side effect of better CSF flow, but there are those for whom both a jugular procedure and hydrocephalus treatment would be even better?

Incidental to that, do failures or the duration of successes depend on whether there remains good CSF flow afterwards? It seems that because of the way excess CSF is drained (jugulars), as well as the fact that CSF comes from blood, they are interrelated.

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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

If you have contact details for Ray Damadian I have a Dr who would be delighted to discuss skeletal misalignment and CSF flow with him.

Please PM me if there's an email address I can pass on.

This is very important. the relationship between venous drainage, cerebral perfusion and cerebral pulse pressure and CSF drainage are intimate. Go on YouTube and watch Dr Clive Beggs talk on this subject from the NY City Symposium of 2011.

Again, predicting outcomes of treatment of venous insufficiency depends upon the nature and extent of the neural damage of MS as much as the success in treatment of venous outflow obstructions.

damaged myelin leads to neuronal death and dysfunction. how much function can return depends as much on how extensive neuronal death is as anything else. In my OPINION dead neurons remain dead after venoplasty.

DrS

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

i took some time off for a variety of reasons, but mainly because the discussion seemed dead. Upon my return this week, i have been stimulated anew and hope that the readers have as well. Tough questions have been brought forward and tough answers remain. I stay in it for you.

happy christmas everyone.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

http://www.ncbi.nlm.nih.gov/pubmed/21370770
"Neuromuscular orthotics in the treatment of craniomandibular dysfunction and the effects on patients with multiple sclerosis: a pilot study."

http://scholar.google.com/scholar?clust ... ciodt=0,24
"[CITATION] Eighty-one patients with Multiple Sclerosis and Parkinson's disease undergoing upper cervical chiropractic care to correct vertebral subluxation: a …
E Elster - Journal of Vertebral Subluxation Research, 2004"

http://www.mccoypress.net/juccr/docs/2012-1204_ms.pdf
"Upper Cervical Chiropractic Care of a Female Patient with Multiple Sclerosis: A Case Study"

http://www.logan.edu/mm/files/LRC/Senio ... Dec-30.pdf
"Effects of an Upper Cervical Adjustment on Paraspinal Temperature Differentials"
Demyelinated neurons conduct more poorly as temperatures increase. If adjustment affects spinal temperature, this could affected MS disabilities that vary with temperature.

Christmas joy to everyone. May today bring joy and a relief from pain.

You may be right, but it is avoiding future damage that makes it worthwhile to try to stop recurrence. That way it makes more sense to try to retrain, if you know the successes are not as easily lost.

I think there is evidence that neuronal death is also due to continued exposure to fibrinogen, which means if the BBB damage can be halted, and no further extravasation of blood cells, or clots occur in brain vessels, it may stop.

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

Dr. Sclafani, I'm glad to see you're coming aboard. And, I want you to know that "you" made my day when, at this point in my life, at 66 years old, in a wheelchair, barely able to move, that someone can think of me as being a bully.

i'm a sensitive guy, i guess

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Quote from Dr S;
"I am trying to show with illustrations is that many patients have undergone less than optimal venoplasty procedures and that these should not be the standard.

I am more than willing to take in other theories that I can understand. Please send me peer reviewed references that are published and i will read them and render my own opinion. But I must say that the papers of the University of the Internet do not count. If all I had heard about ccsvi was what I had read on the internet, I would not have become involved. It required the study of countless papers, not abstracts, not internet newsletters, or other opinions. I reviewed some of the abstracts for presentation at the International Society for NeuroVascular Disease and did not see any proposals for presentation on this subject. I am at a loss"

Dr S I see that we are all in a 'Catch 22' situation.

We all want 'Peer Reviewed data',

We all want a 'Preferred Method for Treatments',

We all want 'Longterm Outcome Data',

We all want 'Economical and or Govt supported Treatments',

We all want 'A Quality of Service that is Equal' across the Globe',

And we are still at step one with IR's finding their way, Greed acting just below the surface, conflicts of Interest occurring, disagreements on methods and objectives, variety in PTA, and so on.

As much as I hear you ask us for Peer Reviewed details on some of our (PwMS's) Internet searching we are all in the same craft afloat looking for an Island. There isn't Peer Reviewed Data to help either you in you Role or us in our 'Hope Mode'.

Very pleased to hear we have you with us still, we would have been lost without you.
We thrive on the Balance and Knowledge that you give freely to us. Especially important to me is to hear the experiences of the re-treatments, this is showing yet again that the outcomes that we hear, such as nil response, are technically incorrect when there are findings of issues that require attention and time to test the longevity of the PTA.

I'll leave you in Peace must just about be time over there as it's drawing to a close over here.

Regards,
Nigel

Kerry Christinas everyone!

Great discussions, That was à surprise when i came home after à 3 dat trip.

Go on, go on!

Rgds,

Robert

I am now so confused. In Oct 2010 Dr Siskin told me that every time the catheter is run in the vein it does a little damage. And in Jan 2011 Dr Arata told me that a patient get the best and most improvements with the first angioplasty. Some see no change with repeat angioplasties.