CCSVI and CCVBP

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

Post by LadyGazelle »

uprightdoc wrote:Hello Lady Gazelle,

Strabisimus surgery is certainly an option and much safer 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 addition 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?
I had my first procedure two years after diplopia started in 2008. Also in 2010 I needed a #3 prism in my glasses and now I have #16 with (#8 in each lens so the prism is not so heavy). Dr. Irene Adamczuk doesn't know about working on the dura mater as well as manual mobilization of blood and CSF flow, (pretty sure) but could you write to her on what to do? Her e-mail is Irkac1@frontiernet.net and I have mentioned you on several occasions as well as Dr. Rosa who she knows of him from a NUCCA conference, is all.

What test shows "increased CSF volume and pressure in the brain"? I will be seeing a neurosurgeon next week and he may order any tests needed.

BTW - I learned that Dr. Sclafani only does ONE CCSVI procedure a month... but I AM READY NOW. It takes a few weeks for payment approval.
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Re: CCSVI and CCVBP

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It would be difficult to explain manipulation of the dura mater and mobilization of blood and CSF in an email. I would first have to explain the design of the skull and layout of the brain, as well as the blood and CSF circulatory routes. The dura mater, however, connects to the upper cervical spine, which is the most important area for treatment of strains of the dura mater. In addition to the craniocervical junction I use other areas where the dura is accessible.

I think the best test for you is an upright MRI of the brain and craniocervical junction as well as Cine blood and CSF flow. A principle region of interest is the midbrain. It's important to check CSF flow and velocity through the cerebral aqueduct, and to check the volume of CSF in the cisterns.

Did you say you have arachnoid cysts in the transverse sinus? Did you mean to say that you have enlarged arachnoid granulations in the transverse sinus?
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Re: CCSVI and CCVBP

Post by Ulappa »

Dr Flanagan,

The conversations here have inspired me to have my neck from atlas to C-5 scanned by 3D CT-technology. The radiologist wrote the following: The vertebrae in alignment. No traumatic or destructive bone changes. In anterior atlanto-axial joint there is arthrosis and slight forming of osteophyte (bone spur). In the facet joints no significant arthrosis. No narrowing of root canals.C-3 corpus has on the left a well-defined benign bone cyst.
My GP commented that there was nothing worth investigating further. My neck pains were caused by MS, just like my continuous back pains. Yeah, yeah, and the pigs fly.. Last year I had my atlas realigned and the back pain disappeared for awhile, I stood straight, my weak right side started to strengthen, I could breathe deeply and I could put weight on my right foot. But, I got terrible jaw pains, and the positive effects of the atlas treatment didn't last. This year TMJ was diagnosed for the jaw pain (misalignment of the jaws and the teeth) and I started treatment with braces. And consequently I have suffered terrible neck pains the whole year, but no jaw pain. I hope you'd be able to open the files I sent you and tell me what's going on with my vertebrae. With the 3D images, you can actually look at my neck from all sides, and inside out.
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LadyGazelle
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Re: CCSVI and CCVBP

Post by LadyGazelle »

uprightdoc wrote:It would be difficult to explain manipulation of the dura mater and mobilization of blood and CSF in an email. I would first have to explain the design of the skull and layout of the brain, as well as the blood and CSF circulatory routes. The dura mater, however, connects to the upper cervical spine, which is the most important area for treatment of strains of the dura mater. In addition to the craniocervical junction I use other areas where the dura is accessible.

I think the best test for you is an upright MRI of the brain and craniocervical junction as well as Cine blood and CSF flow. A principle region of interest is the midbrain. It's important to check CSF flow and velocity through the cerebral aqueduct, and to check the volume of CSF in the cisterns.

Did you say you have arachnoid cysts in the transverse sinus? Did you mean to say that you have enlarged arachnoid granulations in the transverse sinus?
BEFORE YOU SAID UPRIGHT MRI WITH DR. ROSA IS UNLIKELY TO HELP...

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?


SOMEONE ON FACEBOOK MENTIONED I MAY HAVE ARACHNOID CUSTS IN THE SIGMOID SINUS BUT THAT WAS NEVER MENTIONED TO ME PERSONALLY... BUT SUGGESTED BY DR. JAMES IN UTAH WHEN FB FRIEND SHOWED MY CCSVI VENOGRAM TO HIM/HER. DIPLOPIA HAS BEEN RESOLVED BY STENTING THE SIGMOID SINUS.

I NEED TO KNOW WHO WOULD REQUEST THE UPRIGHT MRI BECAUSE I DON'T KNOW OF ANY DOCTOR WHO HAS EVER SEEN ONE IN ROCHESTER, NY. I WOULD THINK THE NEUROSURGEON WOULD THAT I WILL BE SEEING MONDAY. I WILL TELL HIM ABOUT MY PLAN TO GET ANOTHER PROCEDURE BY DR. SCLAFANI SO HE MAY BE ABLE TO USE A CATHETER TO ENTER THE SIGMOID SINUS. I AM THE BLIND LEADING THE BLIND HERE. :(

CAN I QUOTE WHY YOU THINK THE UPRIGHT MRI WOULD BE HELPFUL?

THANKS - IF YOU TALK TO DR. SCLAFANI WOULD YOU TELL HIM LADY GAZELLE IS WAITING FOR HIS RESPONSE?
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Re: CCSVI and CCVBP

Post by uprightdoc »

Ulappa wrote:...The radiologist wrote the following: The vertebrae in alignment. No traumatic or destructive bone changes. In anterior atlanto-axial joint there is arthrosis and slight forming of osteophyte (bone spur). In the facet joints no significant arthrosis. No narrowing of root canals. C-3 corpus (body) has on the left a well-defined benign bone cyst.
My GP commented that there was nothing worth investigating further. My neck pains were caused by MS, just like my continuous back pains...Last year I had my atlas realigned and the back pain disappeared for awhile, I stood straight, my weak right side started to strengthen, I could breathe deeply and I could put weight on my right foot. But, I got terrible jaw pains, and the positive effects of the atlas treatment didn't last. This year TMJ was diagnosed for the jaw pain...and I started treatment with braces. And consequently I have suffered terrible neck pains the whole year, but no jaw pain. I hope you'd be able to open the files I sent you and tell me what's going on with my vertebrae. ..
Hello Ulappa,

I haven't had a chance yet but I will try to open your files again this weekend. I am consulting with a very unusual case at this time involving a TV producer that was struck in the top rear section of her head fifteen years ago. She said that it felt as though her neck recoiled like a turtle into its shell (compression strain). She currently has many neurological symptoms. She has had many MRI scans of her brain and spine and all the reports say that everything is normal, including alignment. The problem is she has a mild but very noticable cervical kyphosis (backward bend) in the upper cervical spine. Cervical kyphosis can cause problems with blood and CSF flow (craniospinal hydrodynamics) through the craniocervical junction. Among other things, it can compress the internal jugular veins.
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uprightdoc
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Re: CCSVI and CCVBP

Post by uprightdoc »

LadyGazelle,

It's unlikey that you have arachnoid cysts in the sigmoid sinus but you may have stenosis. Stenosis of the transverse sinus can cause diplopia due to its impact on the cranial nerves that control and conjugate eye movements. Among other things, one of the suspected causes of transverse sinus stenosis is hydrocephalus.

I am sure there are doctors in your area, especially neurologists and neurosurgeons who are familiar with upright MRI and know where the nearest scanner is. Your neurologist can order the upright MRI.

An upright MRI is better because upright posture changes the loads acting on the craniocervical junction. It also changes craniospinal hydrodynamics. Lastly, upright MRI is better because you spend about two-thirds of each day upright. Feel free to quote me about the benefits of upright MRI.
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Re: CCSVI and CCVBP

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Ulappa wrote:Dr Flanagan,

The conversations here have inspired me to have my neck from atlas to C-5 scanned by 3D CT-technology. The radiologist wrote the following: The vertebrae in alignment. No traumatic or destructive bone changes. In anterior atlanto-axial joint there is arthrosis and slight forming of osteophyte (bone spur). In the facet joints no significant arthrosis. No narrowing of root canals.C-3 corpus has on the left a well-defined benign bone cyst.

My GP commented that there was nothing worth investigating further. My neck pains were caused by MS, just like my continuous back pains. Yeah, yeah, and the pigs fly.. Last year I had my atlas realigned and the back pain disappeared for awhile, I stood straight, my weak right side started to strengthen, I could breathe deeply and I could put weight on my right foot. But, I got terrible jaw pains, and the positive effects of the atlas treatment didn't last. This year TMJ was diagnosed for the jaw pain (misalignment of the jaws and the teeth) and I started treatment with braces. And consequently I have suffered terrible neck pains the whole year, but no jaw pain. I hope you'd be able to open the files I sent you and tell me what's going on with my vertebrae. With the 3D images, you can actually look at my neck from all sides, and inside out.

Hello Ulappa,

I didn't have time over the weekend or yesterday so I will try and open your files again later today. In the meantime there is a conflict between your history which you said I could share with others here. The following is the history you previously provided me.


"I have a list of diagnosed diseases: MS, chronic Lyme, chronic chlamydia pneumonia, productive EBV, CCSVI, misaligned atlas, and TMJ. To add to the confusion, in Finland I have progressive MS, in Germany Lyme and co-infections, in Poland CCSVI, and the problem with my neck was diagnosed by an upper cervical chiropractor in Italy. Unfortunately, I was not able to start the atlas treatment there, and there are no upper cervical specialists in Finland. Almost forgot: TMJ was diagnosed in Estonia.

It has taken over two years to get the infections under control, thanks to antibiotics and LDN, although I still test positive for at least three of them. The fatigue, brain fog and cognitive problems have diminished, although the mobility problem remains. My spine in like a Z: right leg "shorter", pelvis unbalanced, neck tilting left, and spine curved in-between. In the last few years I have developed a flat back, and constant pain in my lower back. And I have pain in my neck, especially this year with dental braces. Years ago I had some dental problems in my left jaw, and the dentists figured that filing my teeth in the lower left jaw would help. Well, I ended up with a gap between the lower and upper left jaw, and the teeth not really touching. One dentist told me that the pain in my jaw was caused by MS, and meditation could help me to forget the pain (from all the symptoms that I have heard MS to cause, that was the top). Well, I didn't believe her and consequently I'm getting my misaligned jaw fixed. But since I started the dental treatment, my neck and my right leg are getting worse. My right side is weaker, and the MS started with the right foot drop. Now my neck turns some 90 degrees to the left and not much to the right, and my right foot and leg rotate about the same outwards to the right. I don't know whether my jaw, neck and leg are connected, or how. Or why.
"

I also have a graphic of a skeleton you sent from a company called Starecta that shows significant scoliosis, head tilt, shoulder tilt, leg length discrepancy and pelvic obliquity. There is clearly a conflict between what the radiologist reports and what you have reported to me. The two reports are worlds apart.
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Re: CCSVI and CCVBP

Post by uprightdoc »

Robert,

Have you heard anything from doctors Harshfield or Rosa yet?
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Re: CCSVI and CCVBP

Post by Robnl »

uprightdoc wrote:Robert,

Have you heard anything from doctors Harshfield or Rosa yet?

Hi doc,

Dr. Rosa will react this week, check your mail...

Regards,

Robert
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Re: CCSVI and CCVBP

Post by Robnl »

Hi doc,

Check your mail! :-D
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Re: CCSVI and CCVBP

Post by mdju93 »

Hello Dr Flanagan,

I hope I might be able to get your opinion and advice on some health issues that I’ve been suffering with for a number of years now. I don’t have a diagnosis of MS, or actually, a diagnosis of anything but have been seeing an orthodontist and cranial osteopath for TMJ problems. I’d always assumed my symptoms were a result of my jaw issues but of late feel that perhaps they might indicate something neurological.

With this in mind, at the beginning of September, I decided I would visit an Atlas Orthogonal Chiropractor to get my Atlas bone checked out. The Chiro took some x-rays showing a slight misalignment which he then used to calculate the correction needed. I was adjusted and saw him weekly after the adjustment until around mid-October at which point the appointments became every two weeks and from now on will be every 6 months unless I feel something is off.

All appointments after the adjustment were to check if the Atlas was holding its alignment. The checks used include palpation of the muscles at the back of the neck near the Atlas bone, leg length comparison and muscle strength testing. All testing suggested the Atlas is holding its new position so no further adjustments were performed. The chiropractor is SOT qualified and also did some cranial work to try and help me.

It’s been about 3 months now since the adjustment and unfortunately I have felt no improvement in my symptoms and am now pondering what to do next. The Chiro has the ability to refer for upright MRI here in the UK in London at Medserena with Francis Smith and wondered whether this might be the next step to take or perhaps there is something else you could recommend?

It would be really good to have your opinion.

My symptoms –
Cognitive fog
Poor short term memory
Exhaustion
Ear pressure, Tinnitus, occasional whooshing sound in ears when changing body position, e.g. sitting to lying down
Reduced hearing
Inability to sleep deeply and awake refreshed
Photophobia
Eye pressure
Blurriness in right eye
Face/head pressure
Vague sense of dizziness
Muscle tightness around jaw, neck and diaphragm
Inability to breathe deeply
Poor concentration
Difficulty swallowing
Difficulty projecting voice
Voice fluctuations
Occasional urinary frequency
Migraines/migraine type headaches (since childhood – first symptom)
Poor dexterity/slow handwriting
Difficulty reading/concentrating on text
Depression, Anxiety
Difficulty with conversation/speaking/poor word finding ability
Light headedness on standing up (not all the time)

Many thanks

Kind regards

Mark.
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Re: CCSVI and CCVBP

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Hi Dr. Flanagan--

TERRIFIC review article published in Neurology Research International! Well done!
http://www.hindawi.com/journals/nri/2015/794829/
Thank you for publishing and continuing to educate on the craniocervical junction.
all best,
cheer/Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI and CCVBP

Post by uprightdoc »

Hello Mark,

I hope you get this reply and I apologize for not responding sooner but I didn't get any notification in my email about your comment.

I think that it would be a very good idea to get and Upright and Cine MRI by Dr. Smith at Medserena in London. You have many symptoms that suggest musculoskeletal involvement, poor circulation in the vertebral-basilar arteries, irritation of the lower cranial nerves and faulty craniospinal hydrodynamics.

If you can, send me copies of your upper cervical x-rays.
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Re: CCSVI and CCVBP

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cheerleader wrote:Hi Dr. Flanagan--

TERRIFIC review article published in Neurology Research International! Well done!
http://www.hindawi.com/journals/nri/2015/794829/
Thank you for publishing and continuing to educate on the craniocervical junction.
all best,
cheer/Joan
Hello Joan,

Sorry I missed your post. You're welcome and thanks for the compliment.

Unfortunately, my paper on neuromyelitis optica (Devic's disease) and Asian optic spinal MS was recently rejected. It's a terrific paper. The reviewer, however, said it was seriously flawed becaused I suggest that the two conditions are part of the MS spectrum. The reviewer maintains that the discovery of the aquaporin channels and the NMO-IgG antibody, which I discuss thoroughly, proved that NMO is a distinct condition unrelated to MS. I strongly disagree. It may be distinct but that doesn't mean that it isn't related to MS. It was the same arguement and reason for rejection of my papers from reviewers thirty years ago when I linked normal pressure hydrocephalus to Alzheimer's, Parkinson's and MS. The reviewers all maintained that NPH was a distinct condition unrelated to other neurodegenerative conditions.

Warm regards,
Dr. Flanagan
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Re: CCSVI and CCVBP

Post by cheerleader »

uprightdoc wrote: Hello Joan,
Sorry I missed your post. You're welcome and thanks for the compliment.

Unfortunately, my paper on neuromyelitis optica (Devic's disease) and Asian optic spinal MS was recently rejected. It's a terrific paper. The reviewer, however, said it was seriously flawed becaused I suggest that the two conditions are part of the MS spectrum. The reviewer maintains that the discovery of the aquaporin channels and the NMO-IgG antibody, which I discuss thoroughly, proved that NMO is a distinct condition unrelated to MS. I strongly disagree. It may be distinct but that doesn't mean that it isn't related to MS. It was the same arguement and reason for rejection of my papers from reviewers thirty years ago when I linked normal pressure hydrocephalus to Alzheimer's, Parkinson's and MS. The reviewers all maintained that NPH was a distinct condition unrelated to other neurodegenerative conditions.

Warm regards,
Dr. Flanagan
Time is proving your theories. Yes, the reaction may be unique to the individual-depending on epigenetics/genetics- but it appears the mechanism is related. Hypoperfusion of CSF, blood and the newly discovered (g)lymph system is present in all diseases of neurodegeneration and is a common factor.

Dr. Peter Stys, neurologist and stroke researcher at the Un. of Calgary, was given a 3.8 million dollar grant fee to look at progressive MS, and he concluded that the commonality and differences in diseases of neurodegeneration may simply come down to age of the patient when hypoperfusion can no longer be overcome, and "cytodegeneration" occurs.
The differences may be related to age: Alzheimer’s disease and Parkinson’s disease present decades later than MS, and immune responsiveness wanes with age through a process of ‘immune senescence’ (REFS 21,87). Indeed, the responsiveness of T cells, which are known to be centrally involved in the immunopathogenesis of MS88, appears to be particularly altered with age87. Moreover, it is conceivable that the putative cytodegeneration involving the myelinating unit (oligodendroglia, their processes and myelin) in MS releases debris that is more antigenic35,36,66 than the debris that is shed from the mainly synaptic and neuronal degeneration in Alzheimer’s disease and other traditional neurodegenerative disorders.
http://ccsvi.org/index.php/the-basics/c ... l-diseases

I remain hopeful! Thanks for your continued efforts, and keep submitting those papers. Your life's work is helping so many people, and the craniocervical junction is finally receiving attention in TBI and neurodegenerative disease. My husband is nine years past his MS diagnosis, with remyelination of his cervical lesion, a reversal in gray matter atrophy, no MS progression-- still jogging, traveling and working full days. That's the best gift. We'll keep getting the info out to others.
Merry Christmas,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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