CCSVI and CCVBP

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

Albany CCSVI meeting

Postby uprightdoc » Tue Oct 12, 2010 10:52 am

Kathryn, you're welcome. Please keep me updated.

Poet, if you get this message I contacted Dr. Mark Haake of Dr. Zamboni's ISNVD group. He read my book and I just sent him papers I published in 2003 on the role of the craniocervical spine in MS. I will be at the Albany meeting on Nov 10. I will be meeting with Dr. Haake in the early afternoon.
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Postby silverbirch » Tue Oct 12, 2010 1:29 pm

Doctor

Can you let me know the name of your book [/quote]
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Postby uprightdoc » Tue Oct 12, 2010 1:43 pm

Hello Silverbirch, The name of the book is "The Downside of Upright Posture - The Anatomical Causes of Alzheimer's, Parkinson's and Multiple Sclerosis."

For the rest of you, I have just been contacted by Dr. Charles Woodfield of NUCCA's Upper Cervical Research Foundation. He will be joining me at the November meeting with Dr. Haake. Dr. Woodfield also read the book. He said it was outstanding.
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Postby silverbirch » Tue Oct 12, 2010 2:26 pm

uprightdoc wrote:Hello Silverbirch, The name of the book is "The Downside of Upright Posture - The Anatomical Causes of Alzheimer's, Parkinson's and Multiple Sclerosis."

For the rest of you, I have just been contacted by Dr. Charles Woodfield of NUCCA's Upper Cervical Research Foundation. He will be joining me at the November meeting with Dr. Haake. Dr. Woodfield also read the book. He said it was outstanding.


Have a fab meeting , dont drink too much sparkling water leave some room for the hard stuff !!!

Its lovely that you had good feedback from Dr Woodfield Im pleased for you - you deserve every bit of it xxx
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Postby Ruthless67 » Tue Oct 12, 2010 10:03 pm

Dr. Flanagan,

That's some of the best news I've read lately. That you are having a meeting with Dr. Haake and Dr. Woodfield in November.

This is simply getting amazing to have all of you researchers face to face, sharing and learning together.

Bless you all.

Lora
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Postby costumenastional » Tue Oct 12, 2010 11:34 pm

uprightdoc wrote:I contacted Dr. Mark Haake of Dr. Zamboni's ISNVD group. He read my book and I just sent him papers I published in 2003 on the role of the craniocervical spine in MS. I will be at the Albany meeting on Nov 10. I will be meeting with Dr. Haake in the early afternoon.


Thank you Dear Dr Flanagan.
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Postby costumenastional » Wed Oct 13, 2010 3:50 am

Dear Doctors, I got a question of great importance for you:

Before I ask you I 'd like to notice that prior to my liberation procedure the only symptoms in my legs were numbness and a burn sensation every know and then in the back of my left knee.

While my brain issues subsided considerably the months following the angioplasty, along with arms, hands, wrists etc, I noticed weakness in both my legs! It 's not like i cant walk, stand or something like that. But getting of a chair spontaneously just isn't what it used to be for instance. And it s really strange that some things got better while others got worse. I trust Dr Flanagan remembers my "liberation's" details from my blog. Generally speaking, they ballooned both my jugs and my azy.

Down to the question: do you think that the ballooning Dr Petrov did to my azygous may have been the cause of the weakness's onset in my legs?

Regardless of my serious cervical spine misalignment, I feel that messing with that vein may have had negative results in my case. Do you think that this is possible? Or it's all because of that nearly broken neck of mine?
I know for a fact that it started after the angio.
Last edited by costumenastional on Thu Oct 14, 2010 1:17 am, edited 1 time in total.
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Postby uprightdoc » Wed Oct 13, 2010 4:53 am

One of the problems I discuss in my book regarding cerebrospinal fluid (CSF) shunts is that over draining the brain can be as problematic as not draining it at all. Surgeons noted long ago that withdrawing to much CSF resulted in pressure conus conditions which are similar to Chiari malformations.

As I mentioned previously, I suspect you have a Chiari type malformation. Among other thing, Chiari conditons can compress the brainstem and long tracts in the cord. It can also cause comprssion of cranial nerves including the optic nerve. Your Chiari malformation is probably caused by the wicked misaligment in your upper cervical spine which also affects CSF production, brain flotation and support. It is also affecting the posterior arterial blood supply to the brain and cord. On the other hand, if Dr. Koontz can get you upper cervical spine back to where it should be, you have a good chance of restoring fluid mechanics in the brain and correcting the malpositioned brainstem.
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Postby costumenastional » Wed Oct 13, 2010 5:19 am

uprightdoc wrote:One of the problems I discuss in my book regarding cerebrospinal fluid (CSF) shunts is that over draining the brain can be as problematic as not draining it at all. Surgeons noted long ago that withdrawing to much CSF resulted in pressure conus conditions which are similar to Chiari malformations.


I ve read it. And it makes sense of course. Let's not forget that there are cases of people whose problems only got worse after "liberation".
But for some reason I can't connect the azy with brain drainage.

I understand that it may have an impact on the blood circulation overall but it is primary responsible for the drainage of the cord thus my leg problems which started a little while after the angioplasty may be somehow related despite my neck trauma.

So, I take your answer as if my cord may be over drained at this point resulting in an effect similar to what your describe for brain over drainage.

For my subluxation to lead to this weakness after 10 years and only a couple of months after liberation it would take a huge coincidence wouldn't you say? On the other hand, coincidences happen all the time...
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Postby uprightdoc » Wed Oct 13, 2010 5:57 am

These are not isolated venous systems we are talking about here. The azygous vein ties into the vertebral venous plexus, which includes the internal and external divisions. The VVP has several important connections to a ring of veins at the base of the cranial vault. Azygous drainage can most certainly have an impact on cranial hydrodynamics. If it results in increased drainage of the brain without a matching increases in CSF production the brain will sink.
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Postby costumenastional » Wed Oct 13, 2010 6:18 am

Thank you for clarifying the importance of the azygous. From your answer I understand that if it plays such a crucial role in brain function, it s role in spinal cord drainage can only be bigger.
This is the only reason I think it might have something to do with these leg problems of mine regardless of my misalignment and I would like to hear your thoughts about that. I am positive that weakness and a number of new milder symptoms started down there after the angioplasty.

Just for the record, I would do the angio again simply because the benefits in my case outnumber the side effects.
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Postby uprightdoc » Wed Oct 13, 2010 9:40 am

Hello All, I am currently in communication with another angioplasty case that may be related to over draining the brain resulting in regression of signs and symptoms. Nonetheless, it is still my belief that venous angioplasty and stents will offer an alternative to CSF shunts as well as for venous drainage. However, as I mentioned previously and in my book over drainage of the brain can be even more catastrophic than a clogged brain. The brain needs water for cushioning and support. The impact of venous drainage on CSF volume and brain support is in fact one of the issues I would like to discuss with Dr. Haake. In certain cases the CSF pressure gradient can be improved by angioplasty and stents. In other cases it may be impaired or made worse. Even so, it appears to be helping more people than not, and while it may be contraindicated in certain cases, I don't think we are far from figuring out which ones. We just need to put all our heads together and work through all this new information. We are on the right track.
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Postby Cece » Wed Oct 13, 2010 10:56 am

I checked back to see if drsclafani had weighed in on the idea of overdraining, this was what I found:
http://www.thisisms.com/ftopicp-99978.html#99978

I would have to research exactly what keeps CSF separate from the regular blood stream. In CCSVI the blockages are abnormal and the venoplasty restores them to what is normal. The normal state of free-flowing cerebral venous drainage does not negatively impact CSF in healthy individuals. Also in a spinal tap, some CSF is removed. After I had this, I developed the really painful post-lumbar headache that goes away as the CSF restores itself. If this were truly a concern, I think we'd be hearing a lot of reports of that sort of headache. It's a rather unmistakable headache.

This is meant in all due respect and in hopes of figuring this all out.
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Postby NZer1 » Wed Oct 13, 2010 2:19 pm

I think that there is more to this than we first think. There must be a balancing effect that occurs. My personal experience was to have the headaches after the lumbar punch (for 6-8 weeks). That only explains the low CSF if it changes in any other way there must be an imbalance in the system.
At present I am reading your book Dr F and finding it very enlightening. I am 51 years Male and have had definite MS type symptoms for about 5 years. At the onset of my symptoms I was having pains in both shoulders and under investigation both sides rotator cuffs were torn, found after xrays and ultra sound. During the treatment the MS symptoms occurred. Ironically I could not remember 'tearing' the rotator cuffs although I had been lifting heavy beams with my shoulders and head neck to support then in position. Totally wrong thing to do and in hind sight could have done allot of damage in the neck area. In my youth (13-20 years old) I played Rugby and was a hooker, (center front of scrum) and often had neck injuries and once carried off to hospital suspected broken neck, turned out to be badly strained from the collapse of a scrum. I was spending time weekly having Chiropractic adjustments to free up and stop neck pain. Fortunately I stopped playing.
I have throughout my working career had back and neck problems and to compound I was working as a mechanic, leaning over cars all day. I worked for a period of time driving Jet Boats in the tourist industry for 6 years and had a lower back 'slipped' disc injury from the jarring of driving on a hard seat. I moved into management and office related work it the latter years. So all in all I have worn out much of my spine, and been told I have disc degeneration in three areas.
In 2008 when they were trying to find a reason for my L'Hermittes symptom, numbness in my right foot, fatigue, eye blurring, progressive sensory reduction complaints, heat intolerance, weakness in limbs, balance issues, sensory changes in torso, bladder frequency, cognitive issues/confusion
The MRI done in 2008;
With respect to the spine, there is a linear area of increased T2 signal within the dorsal aspect of the cervical cord at the C2 level measuring around 16mm in length. No cord expansion is identified and there is no increased signal on post contrast T1 imaging.There is a right paracentral protrusion of the C6/7 disc which encroaches on the right C6/7 neural foramen. There is osteophyte formation directed posteriorly about the C5/6 disc which mildly indents the thecal sac, but there is no evidence of cord compression or CSF effacement. There is narrowing of the L5/S1 disc with posteriorly directed osteophytes and a generalised posterior bulge of the disc which indents the thecal sac. The transiting S1 nerve roots appear deviated slightly posteriorly but there is no definite compression. A small caverous haemangioma in the T2 vertebral body. Summary: Two white matter hyperintensities have developed on the left side as described since the previous scan of 12 months ago, There is a stable hyperintensity in the dorsal aspect of the clevical cord as described.
Many years ago I was told I have left leg shorter by 22mm and worn a wedge in the last couple of years, the wedge is a 9mm one.
Since having this MRI I have now been told I have probable MS. I personally believe that it is PPMS as there has been no relapses or remissions. I am naturally interested in CCSVI and the Vascular involvement in MS and read allot of research and data on MS. I believe that there is a link to my MS from both Vascular and Spine alignment in my case. I had several Craniosacral Therapy sessions at which time the therapist said there appears to be a restriction in the flow in the upper thorasic /clevical region.
In putting my picture together I am of the opinion that I am better to wait for the Vascular knowledge to advance. I am also of the opinion that my health could be better if I could find an Upper Clevical Chiropractor. The man I see now days is a sports and general chiro, the Chiropractors here tend to believe they are qualified to treat any area of the body, and that there is no need for specialist Chiropractic work. Do you know of anyone in NZ I could see, preferably in the North Island? Can you offer any insights from reading my brief as well please.
And I must add thank you for making yourselves available to our community of PwMS.
Regards Nigel.
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Postby NZer1 » Wed Oct 13, 2010 5:12 pm

In addition to my list of ailments I also have Trigeminal Neuralgia on the left side of my face that is controlled by Gabapentin. This has been an issue for the last 9 months, it started as intermittent buzzing in my left ear when lying down and progressed over the following weeks to the usual suicidal pain of TN.
Regards Nigel
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