CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby uprightdoc » Thu Dec 01, 2011 5:51 am

Many of you describe positional changes of the head and neck that make your condition better or worse. Lhermitte's sign is indication that neck flexion makes it worse. Turning and tilting the head and neck deforms neurovascular tunnels such as the suboccipital cavernous sinus, which is also known as the atlantooccipital membrane. The suboccipital cavenous sinus contains the vertebral arteries to the brain. It also deforms the spinal canal.

A major type of structural deformation of the spine that results in abnormal twists and turns in the spinal canal is called scoliosis. Scoliosis deforms neurovascular tunnels such as the thoracic outlet tunnels. It can also deform tunnels in the pelvis but that's another story. More importantly, scoliosis deforms the spinal canal (tunnel). Water flows down hill through the spinal canal during upright posture. It follows the curves of the spinal canal and is affected by the shape, design and dimensions of the tunnel. Like all rivers, its flow is also affected by things that get in its way like debris from fallen trees and boulders. Bone spurs and bulging discs are like trees and stones in the path of a river flowing through a canal.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Dec 01, 2011 2:30 pm

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Re: CCSVI and CCVBP

Postby coach » Fri Dec 02, 2011 6:11 am

Dr. Flanagan,
I saw the spine dr. that was recommended. His assesment was that he could do surgery for the bulgiing disc and the lumbar stenosis but couldn't promise anything and that he thought all the problems I'm having are due to ms. I'm not saying ms is not part of the problem but don't know if it is all the problem. I wonder what this same dr. would reccommend to a patient that had the same spinal mri's but no prior diagnosis of ms?
So I feel like it was another dead end. He said he would like to see my cervical mri from emory before he ordered an upright. We asked for my records to be sent to my pcp several weeks ago but they have yet to receive them. Of course that mri was done with me in the supine position as well as the cine mri. From what I've read in your book upright mri gives a better picture of what is going on. I'm just baffled as to why drs. don't use the upright more often. I guess it's hard to teach an old dog new tricks. Will try getting my pcp to order it. Had a fall yesterday where I hit the back of my head on a chair. Seems like my numerous falls have been more related to balance than strength.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Dec 02, 2011 11:03 am

Coach,
I am pretty good at remembering cases and I remember a lot about your case and your daughter. Didn't you both have ON following delivery? I don't recall a bulging lumbar disc and foraminal stenosis. Do you have weakness in your leg or foot and which side is it?

Upright posture gives a much better picture of what's going on. The human spine gets loaded vertically during upright posture which causes compression of the structural components. Compression loads cause cartilage and joints to compress. Bad cartilage and joints bulge and get worse. The alignment of the body changes in the upright position. More importantly, what would happen to a bucket of water if you tipped the bottom of the bucket so that it was upright? Going from lying down to standing or sitting upright causes a waterfall in the brain.

It would be good to check for Chiari 1 or cerebellar tonsillar ectopia in the upright postition. It would also be good to take flexion and extenison cervical scans to check dynamics of the cord.

I agree. I think your falls are more due to balance problems, not strength. Unfortunately most doctors and chiroractors don't do very thorough muscle testing if at all. Muscle strength is easy to test in any case. If you have stenosis in your lumbar vertebra you would most likely have foot weakness. You would also have problems walking and getting in and out of chairs due to low back and leg pain such as sciatica. Sciatica is something most people don't forget. It is up there on the pain scale.
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Re: CCSVI and CCVBP

Postby coach » Sat Dec 03, 2011 6:47 am

Dr. Flanagan,Thanks for the reply. I haven't had any sciatia. My legs do get jumpy at night but pain medication (vicodin) seems to help. My legs seem to want to jump all over the place. I am bothered more at night with this problem. I do struggle with cold hands and feet when in the upright position and not so much when recumbant. I think my husband realizes that an upright mri would be the thing to do. I guess I have had a whip-like type motion due to falls. I've also had some falls which I think may have had an impact on the cervical spine ( wall face plant which resulted in a backward motion of my head and neck, a fall down six stairs, some falls where I've struck the back of my head). I guess I"ve lived a fall prone life. My daughter has had some unexplained bouts with diarhrea. She also has the cold hands problem. She also seems to struggle with mucuous issues. Am wondering if getting an upright mri for her might be advisible. I think we would stand a better chance of getting our pcp to order it. You were correct in remembering that we both had postpartum optic neuritis. I just find that odd. The same thing and the same eye.
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Re: CCSVI and CCVBP

Postby uprightdoc » Sat Dec 03, 2011 8:16 am

Coach,

Didn't you see a full spine chiropractor before seeing the AO doctor?

As I recall, you said you and your daughter are like two peas in a pod, but in your words you got "caught in the squat" so to speak compared to your daughter. If you read some of the cases I posted you will see Chiari 1 type problems and other structural design issues can run in families. We inherit the base of the skull the same way we inherit our faces. The face and base are closely connected and they influence each others final design. Among other things, if you and your daughter look alike you may have very similar posterior fossas and circulatory layouts. The link below is to a website that lists some of the signs and symptoms associated with Chiari 1 type problems.

http://chiarione.org/symptoms.html

The link below is to the same website regarding a family incidence of Chiari 1.

http://chiarione.org/familialCase1.jpg

Even if the AO doctor can't resolve your signs and symptoms I would advise you get your cervical spine corrected periodically due to your frequent falls. You don't want to leave it misaligned as it will only makes things worse.
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Re: CCSVI and CCVBP

Postby DrKoontzDC » Sat Dec 03, 2011 9:05 am

Hello Everyone,

I just ran across some videos this weekend that I found very interesting and thought all of you here would too.

The first one is about an Australian named Joe Cross. 100 pounds overweight, loaded up on steroids and suffering from a debilitating autoimmune disease, Joe Cross is at the end of his rope and the end of his hope. In the mirror he saw a 310lb man whose gut was bigger than a beach ball and a path laid out before him that wouldn't end well— with one foot already in the grave, the other wasn't far behind. FAT, SICK & NEARLY DEAD is an inspiring film that chronicles Joe's personal mission to regain his health.

With doctors and conventional medicines unable to help long- term, Joe turns to the only option left, the body's ability to heal itself. He trades in the junk food and hits the road with juicer and generator in tow, vowing only to drink fresh fruit and vegetable juice for the next 60 days. Across 3,000 miles Joe has one goal in mind: To get off his pills and achieve a balanced lifestyle.

http://fatsickandnearlydead.com


The second one is about Dr. Terry Wahls and how she learned how to properly fuel her body. Using the lessons she learned at the subcellular level. She used diet to cure her MS and get out of her wheelchair.
http://youtu.be/KLjgBLwH3Wc


Both of the videos are truly inspiring and demonstrate the power of the body to heal if given the opportunity with the proper nutrition. What these 2 people have in common is they were both suffering from an autoimmune disease that they were both able to heal themselves of through the power of food, in particularly fruits and vegetables. Food is the fuel for our bodies and if we feed our bodies junk that's what we'll get in return. Processed foods are basically the equivalent of poison to our bodies. They give us just enough to stay alive but not enough to function properly and thrive. It won't matter how much exercise, stretching, meditation and chiropractic care we do, if we don't give our bodies the right kind of fuel it will continue to break down. This is quite literally food for thought.
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Re: CCSVI and CCVBP

Postby MrSuccess » Sat Dec 03, 2011 12:45 pm

the ... ORIGINAL ... description of " medicine ".....- was- ..... " something to be taken to alleviate the body of immediate pain and discomfort "..... until ...... the body NATURALLY healed itself.

Somehow ..... someway .... over time ..... man has forgotten this , and now medication is demanded up front and for the duration of any treatment.

Credit now goes to the pill ......... never your own natural ability to heal.

Mankind is an impatient lot.



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Re: CCSVI and CCVBP

Postby ErikaSlovakia » Sun Dec 04, 2011 6:31 am

Dear Dr. Flanagan,
I had these misalignments: C1, C3, C4, C5, C6, Th1 and couple of more Th and 2 lumbar last week.
It was in January the same or very similar. I have had these problems since my childhood. I was born with abnormal rotation of my head. I also have spina bifida occulta.
Are there any exercises to prevent future misalignments? I do some of course but maybe you know about some magic trick :-)
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Dec 04, 2011 7:30 am

Hello Erika,
I suspect you have curvature problems called scoliosis. There are no special exercises but some are better than others. Any exercise that uses natural movements such as walking are beneficial. Classic yoga when done correctly is also good. I use a mix of exercises. I am heading out now to do classic chi kung and martial arts. I also use different types of cardiovascular exercises and light weight lifting several times a week when outdoor activities slow down and I am forced inside. Sometimes I go for a walk simply to unwind and enjoy the view. On days I have to dig out from mountains of snow, I don't exercise. I dig.
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Re: CCSVI and CCVBP

Postby ErikaSlovakia » Sun Dec 04, 2011 11:03 am

uprightdoc wrote:Hello Erika,
I suspect you have curvature problems called scoliosis. There are no special exercises but some are better than others. Any exercise that uses natural movements such as walking are beneficial. Classic yoga when done correctly is also good. I use a mix of exercises. I am heading out now to do classic chi kung and martial arts. I also use different types of cardiovascular exercises and light weight lifting several times a week when outdoor activities slow down and I am forced inside. Sometimes I go for a walk simply to unwind and enjoy the view. On days I have to dig out from mountains of snow, I don't exercise. I dig.

Yes, you are right, I have scoliosis as well since my childhood and the doctor could also somehow see it. My left leg is shorter, I also have arthrosis and coxal arthrosis or how you call it in English.
As I read your lines, there is no magic and I will continue with walking and and relaxation exercises for my spine. Unfortunately exercising makes me very fatigue so I just must be careful with the quantity.
Thank you!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Dec 04, 2011 12:10 pm

In plain English we call coxa arthrosis a degenerated hip. Do any exercise you can tolerate that makes you feel better. Make sure to include stretching.
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Re: CCSVI and CCVBP

Postby NZer1 » Sun Dec 04, 2011 10:17 pm

coach wrote:Dr. Flanagan,Thanks for the reply. I haven't had any sciatia. My legs do get jumpy at night but pain medication (vicodin) seems to help. My legs seem to want to jump all over the place. I am bothered more at night with this problem. I do struggle with cold hands and feet when in the upright position and not so much when recumbant. I think my husband realizes that an upright mri would be the thing to do. I guess I have had a whip-like type motion due to falls. I've also had some falls which I think may have had an impact on the cervical spine ( wall face plant which resulted in a backward motion of my head and neck, a fall down six stairs, some falls where I've struck the back of my head). I guess I"ve lived a fall prone life. My daughter has had some unexplained bouts with diarhrea. She also has the cold hands problem. She also seems to struggle with mucuous issues. Am wondering if getting an upright mri for her might be advisible. I think we would stand a better chance of getting our pcp to order it. You were correct in remembering that we both had postpartum optic neuritis. I just find that odd. The same thing and the same eye.


http://chiarione.org/symptoms.html

I have looked the symptom list and it describes me to a 'T'

In the same breathe it reminds me that all of us need quality assessment and dx before we progress to treatments.
CCSVI PTA especially, we are making assumptions and having expectations that are effecting the data on results from PTA un-necessarily.

And after saying that we need to attend to our misalignment issues at the same time.

Thank you so much Dr F,
in some way I feel like I have justification and acceptance after reading the symptom list you posted. (Kind of like coming home.) I had not researched CM1 as a possibility!

Regards Nigel
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Dec 05, 2011 1:16 am

Nigel,

I have always maintained that you are either a Chiari 1 or a functional Chiari that occurs with neck flexion. Your case below was taken from way back on this thread and comments on wordpress. I put you in the category of MS and trauma, especially due to the rugby neck injuries.

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 side rotator cuffs were torn, found after x-rays 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’hermittee’s 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 hemangioma 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 cervical 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 have 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 thoracic /cervical region.

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. I have noticed in the last week that when I am bending over weeding in my garden that after being bent over for five or so minutes that I stand and feel light headed. At various times over the last 5 years I have been suspicious of low BP and asked our MS nurse to check it. We have checked in various situations including the gym and throughout the testing I have been able to pick when my BP is low. When I have been at the GP Doctors naturally I have shown normal BP and it has always been put down to the nurse not doing her tests correctly, she is angered and hurt by the words of my GP naturally. Any way I am wondering if there is anything that could be making my BP fluctuate and at present I am aware of it more as my disease is active because we are having big weather changes for spring, from snow to hot also summer weather and my symptoms seem to be more progressive and active in this weather pattern. Yes I am aware of the Stroke risk and I have been asking my GP what I need to do to keep on top of this if possible.

Its been about 18 months since my last MRI and I think from memory there were about 6 lesions in the brain that showed after the Cord lesion MRI, I am keen to get another MRI sometime, our health system should I hope enable that. I have been wanting to educate myself on the MRI testing in CCSVI so I can ask for any extra investigation at that time rather than shelling more money for testing. Most of my dx costs I have paid for because it takes too long through the system. If you are urgent you receive help quite quickly but for the dx of things like MS its a long and worrying journey. I have had 3 MRI (2 x 2007 and 1 x 2008) In the first two they noted the disc degeneration and the disc bulges and in the 2008 they found the lesions, below plus the previously mentioned cord lesion. "Two foci of white matter hyperintenity have developed as shown on flair and T2 imaging. There is a 2-3mm focal elipitical area anteriorly in the left centrum semiovale and a more confluent area of white matter hyperintensity adjacent to the lateral aspect of the atrium of the left lateral ventricle. This measures 11mm in maximum diameter. No enhancement occurs on administration of Gadolinium."

When the Neuro reviewed the films with me when I asked what areas would be affected by these lesions and the cord lesion he pointed out four other lesions which I could also clearly see when he indicated where they were. Sadly he did not write down the positions of the extra four found. And more to my disappointment he did not talk about the areas that could be affected by the positions of any of the lesions, because of my technical mind I was deeply disappointed by this.
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Dec 05, 2011 1:41 am

Thanks Dr.

Next step Upright MRI ?

Regards Nigel
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