CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby NZer1 » Wed Nov 23, 2011 2:00 pm

Meet the Epigenome
At its most basic, epigenetics is the study of changes in gene activity that do not involve alterations to the genetic code but still get passed down to at least one successive generation. These patterns of gene expression are governed by the cellular material — the epigenome — that sits on top of the genome, just outside it (hence the prefix epi-, which means above). It is these epigenetic "marks" that tell your genes to switch on or off, to speak loudly or whisper. It is through epigenetic marks that environmental factors like diet, stress and prenatal nutrition can make an imprint on genes that is passed from one generation to the next.

Is this a reason for vascular changes? a reason for higher incidence of MS in 'some' populations?

http://www.time.com/time/magazine/artic ... 13,00.html

Interesting reading!

Regards Nigel
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Re: CCSVI and CCVBP

Postby blossom » Wed Nov 23, 2011 2:13 pm

dr. flanagan,

i know that i definitly have cervical issues i hope to get corrected and then time will tell. i wonder that being that my total spine is pretty much of a train wreck is there anything i could do for that too? i would want to pursue chiropractics or whatever i could to help. i think the blood flow and csf flow could be hindered anywhere in the spine??? i know when i started this journey we worked from the bottom up. at this point of the game decent posture and everything else that was once normal is something i seem to only have in my dreams. so anything i can safely pursue??

your knowledge and help has been a light in a very dark place. thank you
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Nov 23, 2011 3:47 pm

As I have mentioned before on this website, about a third of you that contacted me through TiMS and my blog have history of significant trauma and x-rays that show evidence of cervical misalignments and significant spondylosis including compression fractures and atlantoaxial instability. Some of the trauma stories include Civickiller who recalls landing hard on his head twice as a youngster. He has a twin brother who doesn't have MS. Blossom likewise has had numerous injuries. Many of the traumas were caused by car accidents. Athletic activities were high on the list as well such as Nigel's football hyperflexion injury of the neck and HappyPoet's numerous falls skiing. Several cases involved bicycle accients. Two cases resulted in near blindness due to optic neuritis. Two cases were caused by diving accidnets and several were former competitive figure skaters. The trauma list is long. I have posted some of the cases here. Another third of you that contacted me have obvious significant malformations and deformation of the skull and spine such as Chiari malformations, hypoplastic posterior fossas, tethered cords, scoliosis, kyphosis and elongated styloid processes (Eagle's syndrome). Most of these were inherited genetic type conditions. Spondylosis, stenosis and scoliosis can all affect the vertebral arteries, the vertebral veins, and the CSF circulatory pathways resulting in chronic ischemia, edema and increased CSF volume in the brain (hydrocephalus). They can also cause deformation and tethering of the brainstem and cord such Chiari 1 malformations and Lehermitte's sign. The bulk of the remaining one third that contacted me in my opinion had arterial problems, such as migraine variants as well as several cases of Thalassemia anemia. I suspect their signs and symptoms were due to chronic ischemia.

Diet definitely plays a role in many health conditions that can mimic MS such as migraine headaches. I know from personal exprience it plays an important part in my own bout with many remitting and relapsing progressive signs and symptoms similar to MS. My condition is very much related to autoimmune inflammatory processes that runs in the family. It's not easy but I have fairly good success treating many of these cases of probable or possible MS.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Nov 23, 2011 4:00 pm

Hi Blossom,
We just crossed tracks. As I have discussed with you before I am a big advocate of spinal decompression tables. In particular I am a big advocate of long y axis flexion-distraction spinal compression tables with full function head and tailpieces that incorporate x, y and z motion. I especially like the Cox 7 table. Spinal decompression table decompress the spine by pulling it apart along its length. This helps to restore motion and rehabilitate bad segments of the spine and connective tissues due to spondylosis, stenosis and scoliosis. When the decompression is done intermittently in on and off cycles it helps pump fluids in the cartilage and joint capsules of the spine as well as sluggish blood and CSF flow in the spinal canal. In fact the neurosurgeon you went to offered to write you a prescription for traction which can be helpful. The full featured head and tailpiece flexion-distraction long y axis spinal decompression tables however are far better.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Nov 23, 2011 9:25 pm

Below is recent comment on my wordpress blog regarding a Chiari malformation and joint laxity and instability due to EDS resulting in MS.

Hi, Dr. Flanagan,

I was diagnosed with Arnold Chiari Malformation in 2002 and Multiple Sclerosis in 2003. In 2004, I had decompression surgery, adult VP shunt, laminectomy of C1-C2. This June 2011, because of my Ehlers Danlos condition and a nick by a comb at my hairdresser. My adult VP shunt pierced through my skin. I went in for an emergency revision. This time, a pediatric VP shunt was placed due my Ehlers Danlos. In September this year, my new pedi VP shunt is draining way too much and I’m having to drink 100+ oz a day to keep up with it. It’s either because it’s a pedi or because it’s malfunctioning. But because of my Ehlers Danlos, they’re waiting on changing the valve. I’ve read a lot of information with CCSVI and MS. And so I was very interested to see this subject.

Kolya
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Nov 24, 2011 4:50 am

Blossom,
I sent you the link below previously. It is to a page on cervical spondylotic myelopathy, which is essentially what you have. As you can see spondylosis causes signs and symptoms very similar to MS. It's my opinion that it can also cause MS.

http://www.aafp.org/afp/2000/0901/p1064.html

The link below is to a video by the Laser Spine Institute explaining endoscopic surgery for removing osteophytes (bone spurs) and bulging discs. The terms foraminotomy or laminotomy are different angles of approach the surgeon uses to get to the spurs and discs. Watch the short video on laminotomy. In either approach they do not cut through any muscles or bones. Consequently you don't need general anaethesia and there are far few complications following surgery. The recovery time is much faster.

http://www.laserspineinstitute.com/spinal_orthopedic_procedures/laminotomy/
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Nov 24, 2011 9:22 am

Blossom,
The following is from a post by Dania that was made way back in this thread. I am reposting it here because you probably forgot and I think you will find it interesting in light of your own similar experiences.

Dania - MS symptoms returned 1 week after liberation and then progressed -

"Dr Flanagan I have been suffering with chronic edema, which disappeared 5 hours after I had the Liberation procedure. But unfortunately the improvements only lasted a week and all my symptoms returned. Over the last few years as my MS has progressed, I noticed I have to keep my head tilted upwards (looking at the ceiling) to be able to do anything. If I tilt my head down I cannot lift my foot off the ground. It is like a light switch being turned off, tilting my head down. Any thoughts? "

Like you Dania most likely has cervical spondlylosis and stenosis causing her MS signs and symptoms which is why, just like you, she gets worse with cervical flexion (Lehermitte's sign) and failed to improve following venoplasty.
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Re: CCSVI and CCVBP

Postby blossom » Thu Nov 24, 2011 5:00 pm

hi dr. flanagan,

thanks for takeing the time to repeat past discussions. i do remember them. i know only time will tell. i noticed that they said that csm could begin they thought when the spine had about 30 per cent compression. where abouts does it look i am at?

part of my heebee geebees is due to just dealing with the attitude etc. of the neuro.'s and being told NO. "and not too nicely". i've been trying to pursue this for a long time as you know. finding out about ccsvi then leading to you. it renewed the fire and armed with what info. you have graciously given me and the internet to help in the search for the right dr. here i go. older more crippled more worn out. i do have a very reputable facility willing to help and they do know about the probable ms. it is a long trip "which would be very tough" and also self pay. which i will somehow do. but, wouldn't it be nice if for once things would just be a little easier!

also, dania and i had pm'd a few times. unlike me, she "did" have very good results after ccsvi but unfortunatly due to clotting and scarring her improvements went away and has no flow and is worsening. that's my understanding. i do not know if she has pursued anything else. she has a lot on her plate. dania said that "as her condition got worse" she found that if she looked up she moved better.--"from the beginning" this was the case with me. as i worsened looking up still helps but everything is getting so bad i don't get as good a response. but it still makes a difference.

the other questions pertaining to my spine were meant that even though i'd love to be able to get up and do the irish jig after surgery i'm aware that i will most likely still have things to deal with. and i take it you are saying upper cervical and decompression table and other chiro. techniques would be ok even after surgery.

i just found out that there is a chiro. with a decompression table real close by. i plan on getting more info. next week. will get your opinion.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Nov 24, 2011 11:39 pm

Your welcome Blossom. I don't have your scan in front of me but it's irrelevant how much stenosis you have because the spurs are almost touching the cord, which means you already have significant stenosis of the vertebral veins. Stenosis of vertebral veins causes venous congestion and hypertenison. According to spinal cord injury expert Dr. Wise Young, venous hypertension is one of the most overlooked causes of ischemic damage to the cord. While you may not be clogging after surgery, I can guaruntee that blood and CSF will flow far more effectively to the cord and through the spinal canal. That alone is worth considering in you case. The other key issue in your case is that CSM is insidious. That's why it creeps up on people over many years and can mimic if not outright causes MS. CSM is progressive and it can get worse as you know first hand. In this regard it makes far more sense to deal with it before it gets worse and contacts the cord. The other possible benefit is that by relieving pressure on the vertebral veins it will also decrease fluid pressure acting on the cord. This could restore some function to the nerve tracts. Upper cervical and spinal decompression tables will be safe before and after endoscopic surgery.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Nov 24, 2011 11:58 pm

The following is a fascinating case that was posted by Vii way back in the beginning of this thread. It is another clear example of inhertited structural problems in the skull and spine causing MS. We inherit the design of our spine and the base of the skull the same as we inherit our face which often shows family resemblences.

.... I had Decompression surgery in 1999 for Arnold Chiari malformation. Prior to the surgery, my only complaint was sensory changes of left arm. MRI showed demyelinating lesion on C4. (Radiologist said lesion consistent with MS). Brain showed no lesions, just the ACM. Neurologist believed C4 lesion was related to ACM and said get the decompression surgery done. (my 19 year old daughter had been diagnosed with MS 6 months prior, and my sister had surgery for ACM) In the post-op period I had a surge of neurological symptoms including drop foot and dragging left leg, so more MRI's were done. This time my brain had multiple demyelinating lesions, so neurosurgeon sent me back to neurologist, saying I had MS, too. I went on to have classic MS relapses, including Optic Neuritis multiple times. Was going downhill on the interferons, but have been stable on Tysabri for 3 years ...

I am, a 51 year old female Hispanic (born in Cuba) I am 5'4" tall. I don't have any low back or lower leg complaints. (except for drop-foot, left leg which came after the surgery) My daughter does not have scoliosis, is 5'2" tall. None of her MRI's have mentioned Chiari. My son, who is 5'8" tall has also been diagnosed with MS, and one of his MRI's did mention Chiari, but he has not had any surgery.
When I went back to my neurologist after the Chiari surgery and with MS brain lesions, he did more MRI's and ruled out tethered cord. I have had thoracic lesions as well, over the years.
There was no history of MS in my family at all. My husband had an uncle with MS. I have 3 paternal aunts with Alzheimer’s, and my father, who is 88, is showing signs of dementia, but is in great physical shape, as he exercises regularly.
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Re: CCSVI and CCVBP

Postby whyRwehere » Fri Nov 25, 2011 2:04 am

I think this story (link), about a paralyzed cyclist who regained the use of her legs after a bike collision, could be explained by some of the theories in this thread.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Nov 25, 2011 4:21 am

The same forces that can knock you out of whack can knock you back. Chiropractors, however, have developed much more effective and safer ways of correcting the spine using far less force.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Nov 25, 2011 6:24 am

The following case was posted previously on this thread with permission from TiMS member Johnson who had contacted me through PMs. I repost it here because it is an important case that underscores the role of trauma in MS. His was the only case that involved the TMJ to any significant degree. His TMJ problems however weren't due to vitamen D deficiency or clenching his teeth. It was due to direct trauma from a fall.

I am now 50 years old. I am 6'1" tall. I'm not sure if I can relate my symptoms ("MS") to UC issues or not. I do have a resistance in my neck, with crunching and cracking when turning my head. My head is cast forward when walking or standing.
Being male, I have had my share of head and neck trauma throughout my life. One instance stands out in my memory: when I was about 11 years old I fell through a rotted barn floor. My chin hit a beam on the way through and my head snapped back and the back of my head hit an opposing beam. I fell about 9-10 feet, and was briefly unconscious. I do not recall any other overt whip-lash type situations. Posture is an issue for me (it is not terrible, but not great either. I have no back pain at all. I have a strong back and worked hard in my younger years. I am 50 now.
I had severe TMJ dysfunction that started when I was about 15 years old and by age 33 I had all wisdom teeth removed along with all mercury amalgam fillings as a result. The TMJ problems did seem to very slowly resolve, but I don’t think it was in response to the removal of the wisdom teeth.
I was about 25 years old when I woke up one morning about 25 years ago with my chin locked onto my left shoulder. I couldn’t move it from that position. When I tried to move it, it felt as if it would break. I went to hospital ER, where the attending MD grabbed my chin and twisted my head, causing excruciating pain. I felt lucky that he did not paralyze me. I went to a chiropractor that afternoon and discovered that two vertebrae were locked in a turned position. They told me that likely, I had turned my head in sleep, and when I turned it back, those two vertebrae (I believe it was C2, C3) had remained in the turned position.
I had severe and continual headaches in the couple of years before the first “MS” symptoms manifested. I do not get headaches now. I haven’t had them for about 17 years. In addition to the headaches, it is interesting to note that at the onset of all of the “MS” phenomena, I had a pink/brown fluid discharge spontaneously from my nose and right ear. I described it as synovial fluid (for lack of medical expertise and terminology), and no otologist, neurologist or MD has ever found that to be remarkable. I have never had a recurrence of that discharge. Of further note, it was before any “MS” symptoms that the ear trouble started. I got a “cold” in Lisbon, and flew to the island of Madeira. My ears would not clear from the pressure during the flight, and took almost a week to resolve after landing. The onset of “MS” was about two years after that. Neurology says that it is ontological, otology says it is neurological. Neurology has finally admitted that it might be a brain stem manifestation, which fits with some of what you are saying..
About six years, at the age of 32, after the episode of the severe stiff neck, I had my first "MS" symptoms. My first symptom was left side ON. There was also a strong nystagmus (lateral) especially on the right lateral gaze. I did have an unremarkable ON begin in my right eye about 4 years after the onset of “MS” symptoms, which I resolved very quickly (24 hours) with the intake of massive doses of grape seed extract, and fresh carrot/beet juice. It was mostly a “pulling and heaviness” in the right eye, which never developed into a full ON.

I have had 3 PTA treatments, with the last one employing IVUS. It was found that I have septa and duplication in my IJVs - certainly not caused by spinal misalignment, but the PTAs do not wholly resolve the symptoms either such as: ON, nystagmus and diplopia, current dizziness, falling to the right, fatigue and minor digestive issues described as a lack of motility in the organs by a cranio-sacral massage therapist. I do not feel that venous stenosis is the whole picture, as my venous malformations are congenital, and my first "MS" attack was at the age of 32. I believe there is a constellation of issues that add up to "MS", and believe that cervical issues might well play a part in my own case.

My neck still "locks" sometimes and I need to be careful how I turn my head. I have had chiropractic adjustments over the years - when the situation is "critical". The DC has adjusted the Atlas, but he is a standard DC (though a good one). I am also curious about benign paroxysmal positional vertigo (BPPV) as tilting my head back to look up, lying down, and other positions exacerbate my dizziness. I am completely deaf in my right ear after years of minor ear infections. The loss of cognition is my most egregious symptom, at this point. My brain feels as if it is swimming in molasses.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Nov 25, 2011 8:34 am

It's turkey day number two today. Two of my brothers and their wives will be arriving today and staying for the weekend. I will be talking shop with my engineer brother who is working on a complex tunneling project through unstable soils composed of crushed seashells that will travel below a large bay. He was very helpful when I wrote my book. We will also be talking about fundamental and first, second and third order overtone harmonic waves as he just purchasd a pipe organ late last year. I'm glad I don't live next door. Musical pipes produce longitudinal waves of air that rythmically compress and expand to produce notes when the leave the pipe. Traffic in tunnels and wind around bridges also produce harmonic waves but they are transverse waves that go up and down. I will be speaking plain English with my other brother who is more normal.

I suspect that CSF pulsations (waves) which are reportedly in the 6-12 per minute range are similarly harmonic waves related to underlying neruological, cardiovascular and respiratory waves. The waves are etched into the sutures of the skull and leave forensic evidence. As we learn more, it's not necessarily just the big waves that can do damage in the brain. When it comes to CSF waves and adults with normal pressure hydrocephalus, large spikes are indication of greater compliance in the vessels, which indicates better elasticity and health. These cases are more likely to respond favorably to shunts similar to children with shunts. The worst cases appear to be associated with weak pulsations and poor CSF flow which happens with aging of circulation and the dura mater (connective tissues) of the brain. Aging dura mater causes the venous tunnels of the brain to lose compliance. I also suspect they sag. In either case, it affects pressure gradients in the dural sinuses (venous tunnels). In some cases the problem may be due to aging valves that stiffen and clog with calcium and other debris. I suspect they may also be affected by the aging dura mater, which they penetrate, as well as the surrounding weak CSF pressure that is supposed to operate them.

For those of you interested in CSF waves, flow and valves I just published a page on arachnoid granulations.

http://www.upright-health.com/arachnoid-granulations.html

I am heading back to the kitchen. I have got a lot of cooking to do.
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Re: CCSVI and CCVBP

Postby NZer1 » Fri Nov 25, 2011 11:34 am

Thanks Dr. F, have a wonderful weekend.

This burst of posts has me thinking that dx is going to be the challenge even more so than before because of the resistance shown by Neurology to CCSVI. The posts that you have given all show IMO that there is a time lag between cause and effect and there is, as yet, no 'test' or accepted research to support your understanding.

What do you think will be the steps to simple dx? and for that matter will it be possible to dx with current medical methods?

Do you have a research proposal to support the understandings?

Who will be the most likely Medical Specialty to lead and guide others in this understanding?

Is technology far enough advanced yet to help with detecting this understanding?

Is it possible that there will not be much that can be done for people with these problems?

It appears that early detection of problems from injuries will be vital to mantain QOL?

It seems that what you are describing is a de-generative problem 'set' that can be managed, and that will require focused attention to many things such as diet, meditation and exercise as well as specialist treatment of the upper spine? Generally a mindful attention to ones body, mind and spirit? Basically not a Pharmacological or pill popping management?

Enjoy your family time,
Nigel
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