CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby uprightdoc » Fri Jul 19, 2013 10:53 am

Dania, I don't know what causes the sudden change in heat tolerance except that the cavernous and suboccipital cavernous sinuses play prominent roles in the counter-current heat exchanger system used by humans to cool incoming blood in the internal carotid and vertebral arteries. The cavernous sinus and suboccipital cavernous sinus are cooled by the eyes and scalp veins. The changes in position and blood flow may further decrease inflammation.
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Re: CCSVI and CCVBP

Postby NZer1 » Fri Jul 19, 2013 12:48 pm

Dr F I think that there are several findings in MS that help define the CSF connections and that seems to be muddied by the Neurological way of defining what MS is or isn't.
The studies that show hypothalamus lesions being common in MS and the Dawsons Fingers/Schelling back jets are the other definitives of a 'true form' of 'MS' dx.
I think that there other forms of 'MS' dx that make studies and research hugely challenging because the researchers are trying to find one cause and are trying to use many 'forms' of a group of 'MS' dx's to learn about the overall MS cause and treatment. I hope that is clear, I find that there are so many symptoms that need to be identified like you do Dr F and then work with the individuals and not globally assume that 'oh you have MS what did you expect, a cure!'.

I think I have mis-spelled the swim wear because I was distracted by laughter, I'll find a link for a visual. I think Jim Carrey models them exquisitely! Borat seems have to created the most coverage, in the media anyway!
http://www.brandish.tv/2008/07/06/jim-c ... ion-f.html


;)
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Re: CCSVI and CCVBP

Postby HappyPoet » Fri Jul 19, 2013 12:55 pm

uprightdoc wrote:Have you ever tried sitting on a "donut" for tailbone injuries?

I wish I was sitting on a donut pillow right now.

My perineum pain, which DrF believes was caused by the many falls I had as a downhill skier, is flaring right now.

From skiing, I also damaged my thoracic and cervical spines--spondylosis is a bitch. And when I think back to all the decades that I walked around with a misaligned C1, my heart sinks. Keeping my C1 in alignment now, and in the future, though, is something easy I can do just by keeping my scheduled AO chiro appointments.

Also, after DrF finishes treating me with TENS acupuncture and craniosacral therapy, I'll start decompression therapy for the rest of my spine with another chiro who has the right table for my needs. Things are looking hopeful again, very hopeful.

DrF, every day, I thank God that blossom led me to your thread.
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Re: CCSVI and CCVBP

Postby NZer1 » Fri Jul 19, 2013 1:14 pm

Great to hear the positives HappyPoet! :) :) :)

I just noticed Joan has posted this for us all to ponder;

What has changed?
20 July 2013 at 06:24
In the four years since this page was started, there have been many profound changes in mainstream MS treatment and research. The connection to the vascular system is real for many, and is being dealt with in a "sideways" manner by neurologists. I do not expect we will hear that CCSVI is valid from neurology--they will attempt to rename it, requantify slowed venous return, and make it their own. And they will create drugs to modify it. link

But the facts remain:

1. People with MS have less cerebral blood flow than normal people. Their blood flow exits the brain at a slower rate. Researchers are looking at drug therapies to address this fact, but it is no longer an item of debate. Hypoperfusion is real, and it damages the brain. Whether it is a cause or effect of MS will be debated for decades.
link

2. People with MS do better with exposure to UV rays. It relieves symptoms in many. It is thought this might be due to vitamin D levels, but it might also be due to how UV rays release nitric oxide and change the endothelium and blood flow.
link

3. People with MS are being advised to look into their nutrition and to eat more fruits, vegetables and whole foods and less animal fats and processed foods. When Dr. Swank suggested this 60 years ago, it was called "junk science." It is now given as helpful advice by the NMSS and the AAN. Same thing with exercise. Only a decade ago, pwMS were told to not exert themselves. Now we know that physical exercise and activity delays progression. Same thing with smoking cessation, stress reduction, and better sleep. All of these cardiovascular lifestyle changes can make a difference.
link

4. Oxidative stress and inflammation are recognized as driving forces in MS progression. This has lead to exploratons of new modalities of treatment, like the Nrf2 pathway.
link

5. Gray matter health has been recognized as a more accurate biomarker of MS progression than white matter lesions. Gray matter atrophy will become the new target for MS therapies.
link

6. PwMS have much higher levels of fibrin and endothelin-1 in their serum than normals. These are markers of endothelial dysfunction.
link

7. Upright MRI has allowed us to see how cerebrospinal fluid and blood return to the heart is slowed and impeded in pwMS.
link

8. CCSVI is being explored around the globe. There are literally hundreds of papers published in vascular and neurological journals. New papers come to press every day. Not many utilize Dr. Zamboni's diagnostic protocol, but those that do are finding CCSVI in pwMS.
link


All of this is new. And it has happened in just the past four years.

+++++++++++++++++++++++++++++

For those of us waiting for venoplasty to be accepted as an MS treatment, we have to step back and view the other changes that have happened in MS care.

The American Academy of Neurologists has several papers featured on their page which connect slowed blood flow and neurodegenerative disease. They have a patient outreach branch--The American Brain Foundation-- and they have a yearly Brain Fair to discuss diet and lifestyle changes people with neurodegenerative diseases, including MS, should consider. So much for Dr. Swank's junk science.

But most importantly, all of our lives have changed. For those who did not receive lasting benefit from venoplasty to address CCSVI--many have moved on to look at other therapies and modalities for treatment of their disease. For those who have done well with this vascular approach, life has gone on.

I'm in that fortunate position now. Jeff is doing quite well-- he is working, up and active, with no further MS progression. His gray matter atrophy is gone. Our son is off to college, and we find ourselves in a new phase of life. I've curtailed my online and advocacy time to rediscover my career, my other pursuits, friendships, travel, and to be present in my own life.

When reporters, scientists, neurologists, MS specialists and others say--"Oh, the connection of CCSVI to MS, that's simply junk science"---tell them about Dr. Roy Swank. Remember how long it took his observations of "capillary fragility", slowed blood flow, and hypercoagulation to be accepted as part of MS. He was noting endothelial dysfunction decades before scientists knew about nitric oxide and how environmental factors contributed to blood flow. And he has never once been credited by mainstream neurology. You won't see his name or read his research in their journals. But he was right.

++++++++++++++++++++++++++++++

Here's a wonderful video Christopher A. found on Dr. Swank's work. It was made in 1989 as part of a Canadian news investigation into the success of Dr. Swank's diet in pwMS. If you haven't seen it, it's a must watch. Because today, 25 years later, the NMSS is making these very same dietary and lifestyle recomendations to pwMS.
https://www.youtube.com/watch?feature=p ... Enn_AZT-SU


Dr. Zamboni's discovery of CCSVI is in the same category. He has revolutionized how we look at cerebral blood flow, by studying the under-researched extracranial venous system. He is decades ahead of his time. His discovery of CCSVI may be the other part of the equation on slowed venous return and endothelial dysfunction in pwMS. To say that it is junk science, and that there is no connection in venous return in MS, is to negate scientific fact.

Joan
https://www.facebook.com/notes/ccsvi-in ... =notify_me
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Jul 19, 2013 2:49 pm

Thanks Poet. You are a very challenging case. It's difficult to work on someone while hardly touching the body due to intense pain and inflammation. There are very few if any your parts that aren't on fire. Downhill skiing is notorious for serious injuries. Falls from horses or figure skating, gymnastics, skiing, wrestling, car accidents, etc. are just as bad. A while back on this thead "Johnson" posted his story about falling through a barnyard floor and hitting his chin which threw him backwards and knocked his head on the floor behind. He then fell through the floor about ten feet and hit the back of his head again which knocked him out. Years later he developed MS. Despite what statistical studies show, common sense suggests that there is most likely a strong connection between trauma and MS.
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Re: CCSVI and CCVBP

Postby dania » Fri Jul 19, 2013 8:36 pm

Would not this be great for those of us in a W/C.
http://www.upworthy.com/the-wheelchair- ... ion?c=upw1
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Re: CCSVI and CCVBP

Postby uprightdoc » Sat Jul 20, 2013 9:06 am

Awesome.

Although it does't make you mobile, similar benefits can be achieved with aqua therapy.
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Re: CCSVI and CCVBP

Postby dania » Sat Jul 20, 2013 11:36 am

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Re: CCSVI and CCVBP

Postby THX1138 » Sun Jul 21, 2013 9:45 am

Dr. Flanagan, do you think the pressure I get in my head is causing damage and should be avoided (in my case, primarily, by avoiding standing and avoiding heat)?

Thanks,
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Re: CCSVI and CCVBP

Postby dania » Sun Jul 21, 2013 1:22 pm

More discoveries! I now realize that my left femoral vein is is compressed/pinched. Before having bought into the MS/ autoimmune diagnosis, I thought that was the reason for tingling, numbness etc. Perhaps because of my fall on my coccyx which I believe caused my left hip and leg to be rotated inwards maligning my pelvis. My knees are locked together. They become unlocked if I recline and I jam rolled up towels in between my thighs and knees, forcing my hip to be less rotated and in a more normal position. When I do this the tingling, numbness disappear,. I am straighter, taller in my W/C plus stronger. And also when reclined in my recliner taking the weight off my coccyx and pelvis, I am much better, a lot better. Should write a book after I get this all figured out and hopefully treated and walking again?
A big TY Dr Flanagan. If not for you I would still be in the dark!
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Re: CCSVI and CCVBP

Postby vesta » Mon Jul 22, 2013 12:40 am

Hello Dania:
How and by whom do you hope to be treated? Chiropractic primarily? Realigning the coccyx, Osteopaths, Surgery, Physical Therapy? It appears your entire spine needs to be readjusted. I don't know who in North America is best suited to work this out. Obviously you've taken the first steps by analysing the situation with the knowledge of Dr Flanagan, but I wonder where you go from here. Thanks
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Re: CCSVI and CCVBP

Postby dania » Mon Jul 22, 2013 12:55 am

Hi Vesta. First I must have a correct diagnosis what the starting point is. I have a requisition for a coccyx and pelvic X ray. I believe that the fall on my coccyx is what started the cascade of misalignment of my muscular-skeleton frame. Did I fracture my coccyx? Did it heal misaligned? Is it displaced? What? All I know is, that when I rotate my leg and hip into a more normal position every symptom diminishes or disappears.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Jul 22, 2013 2:11 am

THX1138,
I would have to know more about the nature and location of the pressure you feel in your head and if it is provoked by upright posture which can cause problems with cerebellar tonislar ectopia (Chiari) due to high or low CSF volume and pressure. In your case it will probably be related to low volume and pressure. For now, I wouldn't avoid standing unless there is a clear connection to postural headaches or dysautonomia signs and symptoms etc. I would avoid heat.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Jul 22, 2013 2:23 am

Dania,
The pelvis is a complicated structure with neurovascular tunnels similar to the craniocervical junction of the upper cervical spine and the thoracic outlets between the neck, shoulder and thoracic spine. The femoral arteries, nerves and veins pass beneath the inguinal ligaments located between the anterior most aspect of the ilia above and the pubic bone below. Misalignments of the pelvic deform the neurovascular tunnels which can impinge nerves and blood vessels in the front, back and sides of the thighs.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Jul 22, 2013 2:33 am

Vesta,
What Dania needs is lifetime management of her spine by specialists with expertise in the full spine. She should have regular decompression therapy to manage the damage, prevent further progression and compensate for prolonged sitting.
In addition to decompression, If I were treating her I would be using a gamut of physiotherapy equipment selected according to particular condition and ongoing needs. People with MS can get secondary strains and sprains just like everyone else if not more so due to weakness and imbalances. All acute and chronic strains and sprains should be treated as needed to prevent further complications contributing to the underlying conditon and misery index. Dania also needs exercise. Aqua therapy would be ideal.
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