CCSVI and CCVBP

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby uprightdoc » Tue Aug 16, 2011 2:00 pm

Hello Nigel,
I just finished the webinar, which lasted an hour and then I had a conference call with the doctors. It was about imaging blood and CSF flow using upright MRI. I have commited myself to collaborating with them. The upright MR we will be using is the one used in the study HP was in. Upright MRI is the technology that is going to change our understanding of many neurodegenerative diseses that seem to share common causes. Upright MR is right around the corner and it's affordable.
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Postby NZer1 » Tue Aug 16, 2011 2:36 pm

Sounds great Dr.
Can we have some names?
I am keen to know who and what background.

Regards Nigel
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Postby uprightdoc » Tue Aug 16, 2011 11:23 pm

Dr. David Harshfield is the radiologist and founder of the College of Intergrative Medicine (COINMED). Dr. Scot Rosa is the AO chiropractor. The link below is to the coinmed website. If you scroll down you will see a four part presentation by Dr. Harshfield. We will be doing another presentation on October 2. This one was for Illinois School of Medicine not Indianna. We will be collaborating on a textbook as well.

http://coimed.org/lectures.aspx
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Postby civickiller » Wed Aug 17, 2011 2:45 am

This was asked in another thread

"it cannot be contested that malformed valves are the most common presentation of CCSVI and there is no way for the Atlas to malform valves."

is that last part true?

thanls Dr. F
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Postby uprightdoc » Wed Aug 17, 2011 3:02 am

Yes. It would be a real stretch to believe that atlas misalignments cause malformation of the valves. You're welcome.
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Postby civickiller » Wed Aug 17, 2011 9:25 am

Dr. F

i was thinking about things like the atlas putting pressure on the nerves effecting blood pressure or flow. is that possible?

because they are finding more that CCSVI is not so much about stenosis in veins but malformed valves. with the valves fixed, the stenosis downstream in the veins was fixed. as said by Dr. Sclafani

sorry im just trying to understand it better

thanks for answering my many questions

thank you, Dr. F
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Postby NZer1 » Wed Aug 17, 2011 9:39 pm

Dr. the MR technology is good.

* What else will be required to define and measure what is happening when for instance alignment is corrected or flows are improved?

The visual is not going to show a connection between having UCCA treatment, for instance, before and after that could be linked to symptoms. This has always been the problem, anecdotal doesn't make the grade. There needs to be a way to technically show change that caused the deficit in feeling or movement for instance.

*What other 'tests' are going to 'prove' there is benefit from treatment? (Conduction or blood flows or CSF changes or healing and regrowth)

I went through this same problem with a group helping Dr. Sclafani last year, there is no way of proving improvement that has been used in the past that can be used for this type of treatment of MSers that shows that there is change. It has always been patients evaluating the invisible disease from questionnaires. The tests used for the DMD's (Interferons etc) are patients opinion rather than a test of conduction or muscle strength test for instance.
Without the 'proof' this will remain in the category of 'alternative health treatment' that is patient funded.
It is little wonder that the Interferons are now seen for what they actually are, expensive and not treating the disease, rather treating a secondary body response to a separate action and making money for Pharma. When there is money backing, a smoke screen can be created to show black is white as we have been shown.

Regards Nigel
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Postby uprightdoc » Thu Aug 18, 2011 1:30 am

Civickiller,
Upper cervical misalignments can effect arterial blood flow to the brain by compressing neurovascular tunnels. Mostly they effect the vetebral basilar arteries either by direct compression in the suboccipital cavernous sinus or by their impact on the neurovascular myogenic autoregulatory reflex mechanism which has sensors in the walls of the sinus that help to regulate and maintain steady blood flow in the brain.
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Postby uprightdoc » Thu Aug 18, 2011 1:43 am

NZer,
You have to go by signs and symptoms. Some signs and symptoms are easy to monitor for progress such as muscle strength, gait and balance. But you can't prove change in all cases. You have to use questionaires for example to check for improvement in symptoms such as blurry vision, tinnitus, cog fog, ms hug and numbness and tingling in the feet.
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Postby NZer1 » Thu Aug 18, 2011 1:58 am

Thanks Dr. I understand what you are saying from a practitioners point of view.
The point I am trying to make is that until there are methods that can measure the MS dysfunctions, that can be transferred from operator to operator (or practitioner) and are accurately reproducible there is no one that will believe that any treatment is of benefit and pay money for it through insurance or a Government Health system.
We are held against a wall, until there is technology in the field of MS there will be battles, disbelievers, lack of funds, naysayers and conspiracy theories. The same reasons Chiropractors are not excepted as mainstream health options.
Whether you are aligning heads, fixing plumbing or eating well it all comes down to proof, proof that will withstand scrutiny.
Regards and be well,
Nigel
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Postby uprightdoc » Thu Aug 18, 2011 2:27 am

When it comes to vascular, surgical or upper cervical intervention The proof is in pre and post physiological tests such as blood and CSF flow studies as well as pre and post x-rays and brain scans etc. Again, it is easy to objectively monitor gait, station, strength, reflexes etc. You could also use PET scans to monitor cog fog but it would be expensive and unnecessary. You could also use thermograms to check changes in skin temperature. On the other hand, there is no way to objectively monitor the progress in trigeminal neuralgia. You have to ask the patient.
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Postby NZer1 » Thu Aug 18, 2011 3:11 am

Again I hear you, Dr.
Is the difference then that there are not studies or research that supports consistent outcomes?
Is it operator dependent?
Is there insufficient agreement/definition on the 'disease'?
No peer reviewed studies?
No FDA approvals?
Why for instance is Chiropractic thought to be slight of hand, a fictitious treatment?

What needs to change?
Why is Chiropractic not accepted, what is the reason/s?
Is it that there are UCCA Atlas type Chiro's who are genuinely treating and can prove through xrays for instance and the standard run of the mill Chiropractors who are unable to substantiate what they have done, especially by xray for instance?

Why is it that these treatments are simply not being accepted as beneficial to PwMS, and or in your case as well.

Admittedly treatment is happening because individuals are seeking QOL (quality of life) improvements and have exhausted the mainstream methods without success.

The quest is to accepted, same in personal life I guess. :D
Regards Nigel
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Postby NZer1 » Thu Aug 18, 2011 3:21 am

In addition, showing change must also show benefit and ultimately cure of ailment. Records that are reproducible.

Regards, time for a well earned rest, IMO, its now 11.30 pm,
Nigel
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Postby uprightdoc » Thu Aug 18, 2011 3:26 am

I just had this discussion with Drs. Harshfield and Rosa. In addition to improvement in blood and CSF flow we have to show measurable improvement in patient outcomes.
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Postby NZer1 » Thu Aug 18, 2011 1:02 pm

From what I saw in Dr. Dickholtz's Youtube presentations he is already on the path of research, and that was some years ago.
I would recommend getting in touch with him or his son. They will no doubt have met some mistakes in their journey that your group could learn from.
Regards Nigel.
ps I am finally in the process of booking with Graham Dobson.

CCSVI in New Zealand
https://www.facebook.com/pages/CCSVI-in ... 1636357984
This is a little reminder about the way that the skull alignment onto the spine does have effects in blood flows and pressures, as well as facts about the brain steam that can effect PwMSers.
http://www.youtube.com/user/doctordickh ... odj8SB5VVg
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