CCSVI and CCVBP

[Robnl]

Hi Doc,

Any sign of the cd yet??

[uprightdoc]

No sign yet Robert.

[Robnl]

Hi Doc,

I hope you will receive the cd soon, takes some time

I'm very curious for your opinion, London results were/are dissappointing if dr Smith is right, to be honoust.

Dr. Harshfield has not reacted until now, i know he has opened my mail. Can you ask him for a reaction??

Rgds,

Robert

[uprightdoc]

Hello Robert,
I am sorry I didn't respond sooner but I hadn't received any notification about your comment. We are getting close to opening the restaurant and it has been really crazy here.

I finally got your mail with the scans. I can't believe how long it took to get here. Anyway you have extensive Modic changes in your cervical and lumbar spine. Modic changes are degeneration of the bones of the spine. The vertebrae have thick top and bottom plates of bone called endplates. The endplates are supported by scaffolding of bone, called trabecula. Bone marrrow fills the spaces in between. The endplates of the cervical and lumbar vertebrae in your case show extensive collapse and deformation. The collapse of the endplates can be due weakness or trauma to the vertebrae. Weakness can come from osteoporosis and infections. Trauma can occur due to compressive loads, such as landing hard on the buttocks. On the opposite end, it can be the result of heading the ball. In soccer you were repeatedly exposed to both. The endplate deformation in your case is causing significant compression of the thecal sac (dura mater) of the cervical cord between C5/6 and C6/7. The thecal sac contains the drainage veins of the cord. You also have significant atrophy of the cord. Two potential causes of the atrophy are ischemia and edema. Ischemia is decreased arterial flow to the cord. One of the primary suspects for decreased arterial flow to the cord is the anterior spinal artery which branches off of the vertebral arteries. Among other things, Rafael found decreased blood flow through the vertebral-basilar, anterior spinal and anterior ventral spinal arteries associated with cervical spondylosis. Another suspect of cord atrophy is venous congestive myelopathy. Venous congetive myelopathy was typically attributed to arteriovenous fistulas (malformation). Better imaging and surgical techniques, however, have shown that it can occur without fistulas as well. One of the suspected non arteriovenous fistula causes is spondylosis.

[Robnl]

Hi Doc,

Ha, I already see you running around with plates etc in the restaurant

Thx for the answer. I also go to a clinic that checks all kind possible causes. Blood is checked on metals, levels were high. I detoxed, levels are low now.
Now they are checking the blood to see if there are any infections...let u know.

rgds

robert

[LadyGazelle]

I have been following your conversations with Dr. Flanagan and I find comfort in your self-advocacy. I have spoken with two neurologists, two neuro-surgeons, two vascular surgeons, interventional radiologist, neuro-opthalmologist, an orthopedic surgeon, and tomorrow another vascular surgeon. Hopefully he will check if there is "possible vertebral compression" dx'd by Dr. Siskin with CCSVI procedure in 2010. Dr. Flanagan got me started in 2011 with Dr. Irene Adamczuk (NUCCA), who thinks it has been corrected but a catheter needs to access the brain veins.

I'll ask him to check the compression in my left internal jugular vein as my 6 month follow-up ultrasound with Dr. Siskin showed no CCSVI criteria, but I still have double vision. There was a 5 year study that was just completed by Dr. Mary E. James and her team (in Utah) who have successfully cleared the sigmoid sinus of subarachnoid cysts; which resolved diplopia. If correcting my atlas relieved the vertebral compression, then I can TRY to find a neurosurgeon here to "finish my journey to wellness" (not Utah).

I will be following your journey! Good for you!

ALSO - Thanks to Dr. Sclafani for time a couple weeks ago on the phone regarding the same.

[Robnl]

http://www.ncbi.nlm.nih.gov/pubmed/26499397

Abstract

Cerebrospinal fluid (CSF) circulation and turnover provides a sink for the elimination of solutes from the brain interstitium, serving an important homeostatic role for the function of the central nervous system. Disruption of normal CSF circulation and turnover is believed to contribute to the development of many diseases, including neurodegenerative conditions such as Alzheimer's disease, ischemic and traumatic brain injury, and neuroinflammatory conditions such as multiple sclerosis. Recent insights into CSF biology suggesting that CSF and interstitial fluid exchange along a brain-wide network of perivascular spaces termed the 'glymphatic' system suggest that CSF circulation may interact intimately with glial and vascular function to regulate basic aspects of brain function. Dysfunction within this glial vascular network, which is a feature of the aging and injured brain, is a potentially critical link between brain injury, neuroinflammation and the development of chronic neurodegeneration. Ongoing research within this field may provide a powerful new framework for understanding the common links between neurodegenerative, neurovascular and neuroinflammatory disease, in addition to providing potentially novel therapeutic targets for these conditions. This article is part of a Special Issue entitled: Neuro inflammation: A common denominator for stroke, multiple sclerosis and Alzheimer's disease, guest edited by Helga de Vries and Markus Swaninger.

Copyright © 2015. Published by Elsevier B.V.

[uprightdoc]

Hello Lady Gazelle,

Thanks for the update. Diplopia is often associated with hydrocephalic-like conditions that affect the midbrain. The midbrain is penetrated by the cerebral aqueduct and surrounded by the interpeduncular and superior cerebellar (quadrigeminal) cisterns, which makes it susceptible to strains and deformation due to increases in CSF volume and pressure. Clearing the sigmoid sinus of cysts improves venous drainage and CSF flow. Stents have also been used in the dural sinuses.

In addition to relieving vertebral strains of the craniocervical junction (upper cervical spine), in cases involving optic neurits, diplopia and nystagmus, I like to use methods I developed for manual mobilization of the dura, blood and CSF flow. The cavernous sinus is important to drainage of the eyes and brain. It also contains cranial nerves 3-6. CN's 3,4 and 6 (occulomotor, trochlear and abducens) control the extrinsic eye muscles. The eye conjugation centers are in the midbrain close to the cerebral aqueduct.

My next paper is on neuromyelitis optic, also known as Devic's disease and Asian optic-spinal MS. Neuromyelitis optic is characterized by optic neuritis and transverse myelitis. It has been a long contentious debate as to whether or not it is part of the MS spectrum. My theory as to the difference in prevalence of MS and NMO has to do with differences in craniospinal morphology (design) between races and gender.

[uprightdoc]

Hello Robert,

I got your email. It's great that Dr. Harshfield got to see your scans and commented. It is interesting that he noted a possible reduction in flow through the staight sinus, which would explain the significant number of lesions in the brain. It does not however, explain the significant atrophy of the cord. There are two major suspects in atrophy of the cord. One is a decrease in arterial supply (ischemic myelopathy). The other is decreased venous drainage. So far you show no signs of obstruction ito the vertebral-basilar or anterior spinal arterties in the craniocervical junction. The only other test to rule out possible obstruction would be an MRA (angiogram). The condition of your spine, however, makes me suspect venous congestive myelopathy. You have significant Modic degeneration of the entire cervcial spine, as well as the lumbar spine. The Modic degeneration is collapse of the support structure of the bones (vertebra) of the spine resulting in deformation of the endplates that invade the spinal canal similar to osteophytes. We have been discussing the impact of spondylosis, bone burs, stenosis and scoliosis on the vertebral veins and CSF flow since the start of this thread. Dania, Blossom and many others have similar problems. The greatest deformation of the endplates in your case is between C5/6 and C6/7. The deformation is compressing the thecal sac and vertebral veins. Many of these types of problems can be potentially corrected using minimally invasive, safe and effective endoscopic surgery. The problem is that many people have permanent tissue damage and will not benefit from surgery. The other roblem is the neurosurgeons still don't see the connection.

[Robnl]

Hi Doc,

I'm curious if Dr. Rosa will give a reaction..I am now waiting for the bloodtest for infections.

After that i want to decide if there are further options...

[uprightdoc]

Hello Robert,

According to his last reply to you it sounds as though both Drs. Rosa and Harshfield will comment on your scans. I look forward to seeing what they have to say and will add my opinion as well.

[LadyGazelle]

Hello Lady Gazelle,

Thanks for the update. Diplopia is often associated with hydrocephalic-like conditions that affect the midbrain. The midbrain is penetrated by the cerebral aqueduct and surrounded by the interpeduncular and superior cerebellar (quadrigeminal) cisterns, which makes it susceptible to strains and deformation due to increases in CSF volume and pressure. Clearing the sigmoid sinus of cysts improves venous drainage and CSF flow. Stents have also been used in the dural sinuses.

In addition to relieving vertebral strains of the craniocervical junction (upper cervical spine), in cases involving optic neurits, diplopia and nystagmus, I like to use methods I developed for manual mobilization of the dura, blood and CSF flow. The cavernous sinus is important to drainage of the eyes and brain. It also contains cranial nerves 3-6. CN's 3,4 and 6 (occulomotor, trochlear and abducens) control the extrinsic eye muscles. The eye conjugation centers are in the midbrain close to the cerebral aqueduct.

My next paper is on neuromyelitis optic, also known as Devic's disease and Asian optic-spinal MS. Neuromyelitis optic is characterized by optic neuritis and transverse myelitis. It has been a long contentious debate as to whether or not it is part of the MS spectrum. My theory as to the difference in prevalence of MS and NMO has to do with differences in craniospinal morphology (design) between races and gender.

I had an appointment with a neuro-opthalmologist 11/2/15 who thinks my only option for double vision is "strabismus surgery" rather than getting poked in the brain and possibly dieing! https://en.wikipedia.org/wiki/File:Desi ... cle_CO.jpg

He knew nothing about the venous connection to diplopia. I have another appointment with a brain surgeon on 11/16/15 hopefully to discuss my venogram and if he could help me. Another doctor in Utah I am unable to contact personally (being kept secret?) has seen my CCSVI venogram (through a contact on Facebook) and says my sigmoid sinus need to be cleared and possibly stented to relieve double vision since 2008. (FB friend relayed)

Do you think upright MRI with Dr. Rosa will prove anything? Or do you think I should see Dr. Sclafani to have another CCSVI procedure with IVUS? He doesn't go into the brain (he and I discussed it), but then he could see that the brain is accessible with a catheter through the left internal jugular vein. Dr. Siskin said he couldn't balloon the upper left IJV due to possible vertebral compression but nobody knows how to confirm that. Albany Medical Center is not doing anymore CCSVI procedures.

[Robnl]

Dr rosa should have the mri now

[Robnl]

Dr rosa should have the mri now

[uprightdoc]

Hello Lady Gazelle,

Strabissimus surgery is certainly an option and much safter than brain surgery such as clearing the sigmoid sinus. If NUCCA didn't alleviate the diplopia then it is unlikely that an upright MRI and Dr. Rosa will help. In cases like yours, in additon to working on the craniocervical junction, I like to work on the dura mater, as well as manual mobilization of blood and CSF flow. Increased CSF volume and pressure in the brain can affect the conjugate centers of the eye. Did the first CCSVI procedure help the diplopia?