CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby blossom » Tue May 28, 2013 3:22 pm

hi dania, so sorry to hear you have been so sick and your setback. i hope you get all straightened out soon.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed May 29, 2013 2:50 am

Dania,
Except for the bladder infection, the decrease in heat and the improved CBC are good news. It would be interesting to see your whole blood panel to check MCHC and RDW etc. Do you have a low grade or borderline anemia?
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Re: CCSVI and CCVBP

Postby dania » Wed May 29, 2013 11:03 am

I have a low grade fever. No anemia. My RDW-CV was high 14.9 Normal range is 11.5-14.5. RDW-SD 47.1 range 36.1-53.3. MCHC 330 range 310-370. MPV was low 9.0 range 9.9-11.9. Neutrophils high 85.5 range 45-75. Monocytes low 7.8 range 25-75. Day 3 without HOT head and no Diamox!
So many things changing, cannot write all of them down. Vision sharpness, taste. I just feel more normal? If that makes any sense. Wish I could discuss this face to face. I am shocked as to what is transpiring with my body.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed May 29, 2013 1:31 pm

I assume those are your recent CBC numbers, which are affected by the infection. You stated that your RBCs are typically at the high end or over it. I suspect your typically higher levels of RBCs may be due to chronic inflammation and suppression of iron availability and utilization. The improvement in vision and taste make sense, as would improvement in any cranial nerve that is relieved of tension, compression and shear stresses within the cranial vault. It certainly makes sense that you feel "more normal" after having the segments and connective tissues of your full spine stretched, decompressed, mobilized and rehabilitated, especially in light of your disabilities and consequently your co-morbidities. It also makes sense that creating pressure gradients within the cranial vault and spinal canal will help move sluggish, stagnant and obstructed blood and CSF flow in the brain and the cord. It will also relieve abnormal pressures. The movement of blood and CSF is healthy for the brain and cord. I wish I were treating you so I cound follow, test and record the changes. Chiropractors primarily use flexion-distraction tables for effective treatment of complex orthopedic and musculoskeletal disorders, such as spondylosis, stenosis and scoliosis. Most doctors don't use them for neurodegenerative conditions such as AD, PD, MS, ALS etc. The particular tables I recommended are powerful tools but the doctors need to get up to speed with the pathology and the research.
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Re: CCSVI and CCVBP

Postby dania » Wed May 29, 2013 1:41 pm

I wish you were treating me also. I would be there in a flash and I know Blossom would be also. I think I would make a great case story. The CBC numbers were from Monday.
TY!!!!!!!
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu May 30, 2013 1:00 am

You already are a great case story. Hopefully we will find a good doctor with one of the full spine flexion-distraction tables I recommended for Blossom. Keep me posted about your progress.
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Re: CCSVI and CCVBP

Postby NZer1 » Thu May 30, 2013 1:53 am

Hello World,
I thought whilst the positives are flowing I would say that my Chiro John has made some positive progress with my neck and hips.
For the first time ever today he only had to do an L4 adjustment and didn't require the wedges and multiple adjustments of lower spine and hip joint!
He also has managed to improve my neck and had previously been working on a left side atlas adjustment for months and now for 2 weeks in a row it has held and he has done right side Occipital both times in stead. This week he said it was almost not an adjustment but could feel the tension and so could I when he pressed the muscles to show me.
I feel lots better, it is hard to give insight to the changes because I am also having major herx reactions due to increasing the protocol pulse timing. The protocol reactions are directly on areas of past injuries and scaring of tissue, of many types and overall as that occurs I become less mobile than ever before as the cellular die off occurs. The positive in all that is that I do have times when I regain strength during the day for varying periods and I am able to do things I haven't done for years, as well as feel things in my legs and feet, mid section and areas that I wasn't aware I had lost feelings and muscle.
Amazing process and also quite terrifying because of the unknown illness depths, cognitive blocks and fatigue that is huge!
I do recover over time and there are no patterns to give clues what the pulses will be like each time, they are still increasing in herx effects so I have a way to go yet. Because the pulses are 14 days apart now, I just get settled with less moment by moment symptom fluctuations and herx effects and then down I go again.
The key for all our group of 7 in NZ doing the Protocol has been to avoid stresses completely and do everything it takes to stay positive. Maintain a strict diet and detox program as well as using supplements for bio-film breakdown. Studies have shown that bio-films are common in PwMS so everyone needs to be aware of the problem and treatments which are basic and simple. nattokinase, serrapeptase, and lumbrokinase are the three saviours, If you are into Dr.Klinghardt's studies/research, he states the effectiveness of these 3 supplements are
Serrapeptase 50% Nattokinase 75% Lumbrokinase 95%
I have chosen to use Neprinol AFD and also use an NT Factor Mitochondrial support by NutriCology
both available from Vistacost and or IHerb. Both come with recommendations from many leading MS guru's that I talk with on FB.

:)
Nigel
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Re: CCSVI and CCVBP

Postby Rogan » Thu May 30, 2013 8:51 pm

Uprightdoc,

More people coming around to your wisdom.

Here's a link to Spinal Care in the Seattle area.

http://sherwoodspinalcare.com/tag/ccsvi/

Did you know the late Dr. Charles Poser of Harvard Medical School? Apparently he had spent a portion of his academic career relating physical spinal trauma with folks with MS.

These Dr.'s at Sherwood are also seeing success with folks with Parkinson's. Just as you have been telling us. Do you believe Alzheimer's is a clogged artery brain problem? Or more generally a Normal Pressure hydrocephalus problem, which clogged arteries could contribute too?

Thanks for your wisdom and healing methods.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri May 31, 2013 2:24 am

Hello Rogan,

Your welcome.

Although there have been others, Dr. Poser was one of the first experts to recognize the possible role of trauma in MS. He suggested that it was due to disruption of the blood brain barrier. Dr. Poser was also an expert on the epidemiology of MS. My theory is much more extensive than Dr. Poser's. Among other things, it includes the role of trauma and spinal injuries in faulty cranial hydrodynamics (fluid mechanics in the brain) and subsequent neurodegenerative conditions. Violent venous inversion jets, as suggested by Dr. Schelling, probably play a role in disruption of the blood brain barrier. My theory is that the design, layout and angles of the dural sinuses determines the force and reach of the violent venous inversion flows into the periventricular areas of the brain.

Cardiovascular degeneration and diseases, as well as hypertenison definitely play a role in the cause of Alzheimer's and other dementias. Faulty cranial hydrodynamics, such as NPH also play a role. Cardiovascular degeneration that affects arterial flow into the brain coupled with obstruction to blood and CSF outflow, compounds the problem. Certain cases of NPH respond to CSF shunts. The trick is in determining who will benefit.
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Re: CCSVI and CCVBP

Postby Rogan » Fri May 31, 2013 10:48 am

Thank you again for your comments and study around these very serious neurological issues.

The part that is amazing me still is that there are surgeon's around the world who have the guts to treat these issues.

If my information is correct, Dr. Roberto Galeotti was the first surgeon in the world to perform the Liberation procedure using PTA. How do the shunts to relieve NPH get placed in the brain? Do you know?

Also, I am a bit out of my league when it comes to cranial anatomy. But some of the Venograms I have seen Dr. Sclafani post look like the catheter may reach pretty deep up into the brain. The portion of the vein that is well beyond the top of the internal jugular?

My question is this. Do you foresee a technology in the future that could extend these surgical techniques further into the brain? For example a catheter that could clean out your Circle of Willis?

Thanks in advance. The research blows my mind. The fact that surgeons have the guts to try things makes me so proud of these very brave doctors.
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Re: CCSVI and CCVBP

Postby dania » Fri May 31, 2013 12:46 pm

Day 6 without HOT head!!!!!!!!!!!!!!!!!!!!!!!!!! I can tolerate the heat, and just in the nick of time as it is 90 degrees at the moment.
I continue to improve, bit by bit. I use to say I was becoming a statue, now the statue, me, is coming to life. My contacted muscles are disappearing. Everything is changing. Typing with both hands again. My conditions of my nails has returned. No more stuffy nose. Digestive system waking up. My whole body is waking up, coming alive.
TY Dr Flanagan
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri May 31, 2013 1:25 pm

Your welcome Rogan. Shunts are placed by drilling holes into the skull and inserting a catheter with a gating mechanism such as a ball and valve that opens a certain pressure determined by the surgeon. There are different types of shunt gates and mechanisms including antisiphon to prevent overdrainage. Recent research has shown that some cases however, do better with siphoning. Mechanical shunts are placed in the lateral ventricle. Endoscopic third ventriculostomies are fenestrations or puncture holes poked into the bottom of the third ventricle. Lumbar shunts are placed in the lumbar cistern to siphon CSF out of the cranial vault.

It does take steady, highly skilled confident hands to work on the brain. It's getting much better with endoscopic brain surgery. I'm sure they will include deeper penetration into the brain with catheters and other microsurgical and non-surgical equipment. While good surgeons and surgery are terrific when you need them, considering all the complications and risks, it would be wise if also worked on other effective less invasive biomechanical and physiological methods of intervention and prevention of neurodegenerative conditions.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri May 31, 2013 1:41 pm

Thanks Dania. Many of your sigs and symptoms are the result of adverse mechanical tension in the central nervous system due to dura mater and dentate ligament strains. In addition to decompression of the segements of the spine and spinal canal, flexion-distraction helps to rehabilitate and release tail end (sacrococcygeal) and segemental tethering caused by inflammation and spondylosis etc.. The movements also move blood and CSF via pressure gradients. It's great for rehab of the spine.
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Re: CCSVI and CCVBP

Postby NZer1 » Sat Jun 08, 2013 1:42 pm

From the Chiari Support Group ; http://www.chiarisupport.org/

Factsheets for Docs-on-the-go: Chiari-1 Malformation

©2005 SJ Rodgers, Educational Therapist, and Danny Whitehead, M.D.
Endorsed by Paolo Bolognese, M.D., Associate Director of The Chiari Institute
Y ou know how to recognize multiple sclerosis (MS) – you probably have
several cases in your busy practice. You also expect to add one or two new
cases every year, because you know that 400,000 Americans have MS, and that
another 200 are diagnosed every week. MS is rare, but not uncommon, so it doesn’t 1
surprise you.
Did you know that similar numbers apply to Chiari-1 Malformation? 2 3
How many Chiarians have you identified in your practice?
Most cases of Chiari are left undiagnosed, or worse, misdiagnosed as multiple sclerosis, migraine,
fibromyalgia, or psychiatric disturbances, a common error that prevents physically ill Chiari patients
from getting the kind of help they need and deserve.4
Let’s take a closer look.
Chiari-1 Malformation is properly defined as a mesodermal anomaly, a deformity of the posterior
cranial fossa boundaries, most notably the occipital bone, but also the tentorium, clivus, basion and
opisthion. The deformity subtly compresses the cerebellum and often the occipital lobe, brainstem,
and/or spinal cord, too. The cerebellar tonsils herniate into the foramen magnum and may occupy
a small portion of the upper cervical spinal canal. They are visible on mid-sagittal and slightly
parasagittal MRIs. However, in some cases, the tonsils wrap around the brainstem or curl up like
tiny snails; then their appearance is more subtle, but their effect is just as debilitating. The reason
for symptom and sign manifestation – and an important key to the severity of a case – is the
deformity’s effect on cerebrospinal fluid (CSF) dynamics.5 6
When CSF flow is turbulent, reduced, or absent in one or more locations, adjacent brain tissue
receives little nutritional support, cellular byproduct removal, or cushioning from the effects of
mechanical or Valsalva maneuvers. Brain function in the affected areas is disturbed. Naturally,
patients report debilitating effects that correspond to the malfunction of the affected brain parts.
Symptoms and signs can number into the dozens, can appear to exist in unrelated systems, and 7 8
can wax and wane as influential factors change.
How can you identify your Chiarians?

http://www.chiariconnectioninternationa ... mation.pdf


;)
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Re: CCSVI and CCVBP

Postby NZer1 » Sat Jun 08, 2013 1:56 pm

Persuasive info in support of the work by Dr F;

1. http://www.nationalmssociety.org/Who%20gets%20MS.asp “Approximately 400,000 Americans
acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million
individuals.”
2. http://www.thechiariinstitute.com “Until recent years, CM1 was regarded as a rare condition. With the
increased availability of magnetic resonance imaging, the number of reported cases has risen sharply. Current
estimates range from 200,000 to 2 million Americans with the condition. Genetic studies spearheaded by Dr. Milhorat
support a hereditary tendency with a transmissibility rate of 12 percent. Women are affected three times more often
than men. Approximately 3,500 Chiari operations are performed each year in the United States.”
3. http://www.conquerchiari.org/FAQ.htm “Estimates for the number of people with true Chiari range as high
as 500,000 in the United States. A more conservative estimate of 300,000 would mean that 1 in 1,000 people have
Chiari, or 0.1% of the population.”
4. Milhorat TH, Chou MW, Trinidad EM, Kula RW, Mandell M, Wolpert C, Speer, MC. Neurosurgery. 1999
May;44(5):1005-17. Chiari I malformation redefined: clinical and radiographic findings for 364 symptomatic patients.
5. McGirt ML, Nimjee SM, Floyd J, Bulsara KR, George TM Neurosurgery. 2005 Apr; 56(4):716-21 Correlation
of cerebrospinal fluid flow dynamics and headache in Chiari I malformation. “Regardless of the degree of tonsillar
ectopia, occipital headaches were strongly associated with hindbrain CSF flow abnormalities.”
6. Quigley MF, Iskandar B, Quigley ME, Nicosia M, Haughton V. Radiology. 2004 Jul;232(1):229-36. Epub
2004 May 20. Cerebrospinal fluid flow in foramen magnum: temporal and spatial patterns at MR imaging in
volunteers and in patients with Chiari I malformation. “CSF flow in symptomatic patients with Chiari I malformation,
unlike that in volunteer subjects, is characterized by flow jets, regions with a preponderance of flow in one direction,
and synchronous bidirectional flow.”
7. http://www.thechiariinstitute.com/chiari_about.html “The majority of patients complain of severe headache
and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the
ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue
and painful tingling of the hands and feet. Because of this complex symptomatology, patients with CM1 are
frequently misdiagnosed.”
8. http://www.asap.org/chiari-malformation.html “Headaches are often accentuated by coughing, sneezing or
straining. Patients may complain of dizziness, vertigo, disequilibrium, muscle weakness or balance problems. Often
fine motor skills and hand coordination will be affected. Vision problems can also occur. Some patients experience
blurred or double vision, difficulty in tracking objects or a hypersensitivity to bright lights. Physical examination may
reveal nystagmus (involuntary eye movements). Other symptoms include tinnitus (buzzing or ringing in the ear),
hearing loss or vocal cord paralysis. Patients may have difficulty swallowing, frequent gagging and choking and, in
some cases, sleep apnea may be present.”
9. http://www.asap.org/chiari-malformation.html “The most frequent symptom groupings include: headache,
pain at base of skull/upper neck, progressive scoliosis (curvature of the spine); cerebellar dysfunction (difficulty with
balance, coordination, dysequilbrium, low muscle tone); compression of the lower brainstem to cause alteration of
voice, frequent respiratory tract infections, coughing when swallowing foods and fluids, compression of the spinal
cord or distention due to accumulating fluid (hydromyelia); suspended alteration of sensation (e.g., arms are effected
but legs not); central cord disturbance (injury to central part of spinal cord with resultant weakness greater in arms
than legs); spasticity (abnormally high muscle tone or tightness, especially with movement of the muscle).
Combinations of these syndromes occur commonly.”
10. Milhorat TH, Chou MW, Trinidad EM, Kula RW, Mandell M, Wolpert C, Speer, MC. Neurosurgery. 1999
May;44(5):1005-17. Chiari I malformation redefined: clinical and radiographic findings for 364 symptomatic patients.
http://www.chiariconnectioninternationa ... mation.pdf

Really shows how the dx process is lacking for PwMS and Chiari!

;)
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