CCSVI and CCVBP

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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blossom
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Re: CCSVI and CCVBP

Post by blossom »

thanks civickiller, it's so important to consider all this. especially the younger newly diagnosed. not that us older ones should ignore this either.
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uprightdoc
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Re: CCSVI and CCVBP

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I discussed a similar triage proceedure with Dr. Woodfield. I call them the upright protocols. It starts with plain view x-rays of the entire spine to check for spondylosis, stenosis and scoliosis. X-rays are followed up with upright, kinematic and positional MRI, as well as phase contrast cine MRI to check blood and CSF flow. Structural issues are addressed and corrected as much as possible. Structural correction is followed by vascular studies and intervention, or neurosurgical correction of spondylosis etc. Structural correction will improve the effectiveness and durability of vascular and surgical intervention.

Dr. Woodfield of NUCCA also brings Dr. Noam Alperin into the discussion. Alperin is an expert on upright MRI and CSF flow related to hydrocephalus and intracranial hypertension. Woodfield has also worked with Dr. Schelling. I have discussed with Sharon Richardson about having Drs. Scott Rosa and David Harshfield also do a presentation for the ISNVD about their research into MS using upright MRI and phase contrast cine MRI. Dr. Rosa uses Atlas Orthogonal upper cervical correction. Drs. Rosa and Harshfield are further connected to Dr. Raymond Damadian of FONAR corporation who has become a big fan and advocate of Atlas Orthogonal upper cervical correction. He also did studies showing a connection between MS and trauma. The next goal will be to bring spinal decompression specialists and neurosurgeons into the discussion.
rstsen
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Re: CCSVI and CCVBP

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Could you please delete reference to names? Thanks
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costumenastional
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Re: CCSVI and CCVBP

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Hello people! Hello Dear Doctor Flanagan.
Happy Easter even though for us Orthodoxes it' s next week.
My love and best wishes to you all. My eternal gratitude to Michael Flanagan.
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blossom
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Re: CCSVI and CCVBP

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back at you costumenastional!
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NZer1
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Re: CCSVI and CCVBP

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Same from me, CN!
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uprightdoc
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Re: CCSVI and CCVBP

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Hello CN and thanks. Have a happy Easter whenever you celebrate it.
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Taurus
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Re: CCSVI and CCVBP

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Hello Upright Doc and all other fellows

Happy Easter and Best Wishes.
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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc »

Thanks Taurus and the same to you.

The following is an interesting case from comments on my Wordpress blog. This case is another one associated with kyphosis and scoliosis. One of the first cases on the thread was CurIous. CuRious posted his x-ray which showed a cervical kyphosis. Some of you have kyphosis due to degenerative changes in your cervical and thoracic spine...

Hi there! I am a 38 yr old female with kyphosis (Sheurmanns disease) in the upper thoracic region of the spine, and a mild scoliosis in the lumbar spinal region. When I was 12 yrs old, I experienced what I can only describe as an “electric shock” up the back of my neck and into the base of my skull which left the whole left side of my body paralysed for about 10-15secs, with no vision either in my left eye during this episode. I dont even think I told my parents at the time, as once the episode passed, my neck was tender and I was a little disoriented, but I eventually came back to normal over the course of the day. I suffered muscle spasms during my teens and had to take to the bed with valium and hot water bottles. I suffer chronic fatigue and musculo-skeletal pain constantly and inflamation of the joints sometimes after physical exercise, even during my twenties, having had glandular fever at aged 17.

A year ago, I woke up with what I thought was a migraine up the right-hand side of my head, neck and face. I received anti-inflammatory injections from my doctor when migraine was ruled out, and physiotherapy for a spasm at the base of my skull rhs. I had an mri of the c-spine which only revealed early signs of degenerative disc disease. I have constant pins and needles and tingling in both my hands and feet, buzzing sensations up through my feet, jittering legs, muscles spasms, nerve pain in my shoulder and down my right arm, vertigo, blurring of vision in right eye, and episodes of “sun-burn” like patches on my skin which are very hot. I have stabbing pains in my head a lot and my skin itches constantly too.

I am on omesar plus 20mg for uncontrolled post-partum bp for the last 7 yrs, and I take 20mg of cipramil (citalapram) for anxiety depression. I have had a cholocystectomy a year ago. Other than that, I am just living on pain killers and diphene tablets. Lately, I have swelling of the face and neck and enlarged glands, particularly the one under my left ear. Routine bloods have been carried out and all appears fine (also check for rheumitoid arthritis which came up negative). The only bloodwork I am waiting on is a full blood count on account of the swollen and enlarged lymph nodes in my neck and face. Sorry for the essay, but I am NOT a hypochondriac and have been living with a lot of pain now for some years. Could all this be simply down to my spinal deformities, or could I have a neurological disorder like ocipital/fibro myalgia or even MS, or could my medications be causing some of these debilitating symptoms? I know my meds could not be causing ALL of my symptoms, as I have suffered many of these before I started any long-term meds at aged 32.Any advice or information would be much appreciated.
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coach
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Re: CCSVI and CCVBP

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Since MRIs show no evidence of chiari and both my daughter and I had postpartum optic neuritis and I had 14 asymptomatic years after the initial episode of optic neuritis (blurred vision)just wondering if tethered cord is a possibility and can that also be an inherited condition? Never had RR MS and symptoms became worse as I aged which fits in with spine degeration. Maybe I'm crazy but just wondering. I think my mother had this problem but was undiagnosed.Although I have symptoms of chiari they are intermitent.
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uprightdoc
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Re: CCSVI and CCVBP

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Hi Coach,

Classically, a tethered cord is a genetically short cord. Consequently the cord ends lower down in the spinal canal below T12/L1 area near the bottom of the floating ribs. Congenitally short cords have been associated with Chiari malformations, scoliosis and Ehlers-Danlos syndrome. I suspect they may in fact cause scoliosis. Tethering can also occur as a result of injuries and degeneration of the spine that cause its tissues to get stuck so that it can't move freely inside the spinal canal. It is my opinion that cord tethering is more common than we currently realize.

In contrast to tethering of the cord, deformation of the normal cervical and thoracic curves of the spine, such as kyphosis, create tension on the cord, which tractions the brainstem downwards. Misalignments of the upper cervical spine likewise creates tension on the dura mater and upper cervical connective tissues and ligaments, and thus a downward drag on the brainstem and cerebellum.

If you are interested I can get you into one of the upright MRI studies being done by Dr. Rosa just outside Albany, NY. The only cost would be transportation getting to NY and an overnight stay. It's hard to imagine that you don't have a Chiari type displacement blocking blood and CSF flow.
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coach
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Re: CCSVI and CCVBP

Post by coach »

Thanks Dr. Flanagan for the offer but since I have a husband that runs his own business, I think travel might not be realistic due to the time required. Maybe if it's just a one time deal it may be a posibility and I could arrange it to fit with his schedule it may work. Is having MS an exclusionary factor? My husband would want me to question the benefits of possible involvement too.
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uprightdoc
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Re: CCSVI and CCVBP

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It is a one time deal. MS is not an exclusionary factor. Dr. Rosa is including Parkinson's patients as well. The benefits are that it may provide clues as to the cause of your condition and it is free. They found a soft tissue mass or cyst on an MS case I sent to the last study that was missed by the NIH. The patient also had a significant Chiari. I suspect he has an autoimmune-inflammatory condition that caused erosison of his upper cervical spine and connective tissues. A Parkinson's patient I sent was found to have extensive connective tissue damage in the upper cervical spine as well, and a very steep base of the skull that predisposed him to a Chiari. He is currently 65. He recalls a serious injury from a parchute jump in which he landed hard on his buttocks at an estimated thirty miles per hour. He was 21 at the time and in the special forces of the UK. The injury landed him in the hospital for several days. X-rays show a compression facture of the L5 vertebra. I have three complicated cases in the next study. One is a 24 year old young man from Atlanta who has MS. He had a compound fracture at the age of 16 that resulted in a permanent 3/4 leg length difference that caused a curvature in the low backa and significant deformation of the cervical spine with an unusual counterstrain misalignement of C1 on C2 and a head tilt. Another unusual case I am sending is a possible variant form of Parkinson's who is flying down from Ontario. He has seen doctors in Italy, the USA and Canada. I suspect he has a skull design problem. A third case is a 55 year old male dairy farmer with Parkinson's. He has had six serious head and neck injuries that resulted in a permanent head tilt.
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NZer1
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Re: CCSVI and CCVBP

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Dr a friend who has Chiari and had decompression surgery has asked me what is known about CSF flow symptoms?
Is there a group of symptoms that could be allocated to flow issues or is too difficult to define as there are other reasons for the flow problems that cause symptoms as well?

Next question, is there any other places around the world using Upright MRI eg Australia that are involved in the studies of Dr Rosa et al? I'm considering going to Australia for Doppler Testing as its the nearest Zamboni trained place and I also wanted to have an Upright MRI there as they are the closest. My thinking is that it would need to be linked to Dr. Rosa's work to be specific for problems that you are looking for as well.

BTW. I did test positive for CPN on the self test so I am working with Dr. Paul Thibault in Australia as well as my new GP. Don't know where all this will lead to?

Regards Nigel
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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc »

Nigel,
There are no specific symptoms of CSF flow problems as it depends on the area of the brain involved. My next wordpress article is on an Dandy-Walker syndrome, which is associated with cystic (enlarged) fourth ventricle and sometimes and enlarged cistern called mega cisterna magna in the posterior fossa. The symptoms are related to the cerebellum and sometimes compression of the brainstem. Higher up in the cisterns, poor CSF flow can affect the pituitary gland and hypothalamus which can affect the endocrine system and temperature regulation. It also affects the midbrain which contains the substantia nigra and periaqueductal grey involved in resting tremors, freezing and cogwheel motion seen in Parkinson's.

There are very few places in the USA that are doing upright MRI, let alone upright cine MRI. Moreover, Dr. Rosa worked with Dr Damadian to develop special coils to image the critical craniocervical junction. Nonetheless, regular upright MRI is an excellent choice for you to check for a potential Chiari 1, and I would highly recommend they include upright cervical flexion and extension views as I suspect your spine may contact the cord in cervical flexion and trigger the Lehermitte's sign.

There are many potential triggers of autoimmune-inflammatory conditions from proteins, such as allergens to bacteria and internal and external toxins. Some experts claim that toxic mercury fillings in the teeth for example cause autoimmune-inflammatory conditions in susceptible individuals. Other people lack or are deficient in the enzyme lactase and can develop problems from chronic exposure to lactose in milk. Everyone is different.
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