CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby HappyPoet » Sat Aug 25, 2012 11:27 am

Good of you, Dr. Flanagan, to answer questions about Dr. Rosa's study. Here's the link to the first questions and answers: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic20544.html

Since to ask questions can be difficult for MS patients due to cognitive and other problems, it would be extremely helpful for patients if doctors, who recruit study participants from the Internet, would provide informative web pages about those studies. Detailed web pages would also decrease the amount of incorrect information shared among patients and study participants and decrease the number of questions asked by them.

Additionally, I don't believe anyone wants to scare patients into believing that traditional AO chiro isn't good enough or that because patients didn't get into this particular study, their cases are hopeless--an informative web page would help relieve much stress which is NOT good for MS patients and is associated with new brain lesions. While there's much that I (and others) would like to ask you about Dr. Rosa's study and his answers, I need to step off this Q&A merry-go-round... it's already making me dizzy!

Along with everyone else, I'm thankful for Dr. Rosa's continuing research and am looking forward to reading his published study--the MRI cine images will be fascinating to watch.
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Re: CCSVI and CCVBP

Postby NZer1 » Sat Aug 25, 2012 2:29 pm

Glutamate receptor
From Wikipedia, http://en.wikipedia.org/wiki/Glutamate_receptor

Glutamate receptors are synaptic receptors located primarily on the membranes of neuronal cells. Glutamate is one of the 20 amino acids used to assemble proteins, so it is abundant in many areas of the body, but it also functions as a neurotransmitter and is particularly abundant in the nervous system. Glutamate receptors are responsible for the glutamate-mediated postsynaptic excitation of neural cells, and are important for neural communication, memory formation, learning, and regulation. Furthermore, glutamate receptors are implicated in the pathologies of a number of neurodegenerative diseases due to their central role in excitotoxicity and their prevalence throughout the central nervous system.

Excitotoxicity
Overstimulation of glutamate receptors causes neurodegeneration and neuronal damage through a process called excitotoxicity. Excessive glutamate, or excitotoxins acting on the same glutamate receptors, overactivate glutamate receptors (specifically NMDARs), causing high levels of calcium ions (Ca2+) to influx into the postsynaptic cell.[32]

Neurodegeneration
In the case of traumatic brain injury or cerebral ischemia (e.g. cerebral infarction or hemorrhage), acute neurodegeneration caused by excitotoxicity may spread to proximal neurons through two processes. Hypoxia and hypoglycemia trigger bioenergetic failure; mitochondria stop producing ATP energy. Na+/K+-ATPase can no longer maintain sodium/potassium ion concentration gradients across the plasma membrane. Glutamate transporters (EAATs), which use the Na+/K+ gradient, reverse glutamate transport (efflux) in affected neurons and astrocytes, and depolarization increases downstream synaptic release of glutamate.[38] In addition, cell death via lysis or apoptosis releases cytoplasmic glutamate outside of the ruptured cell.[39] These two forms of glutamate release cause a continual domino effect of excitotoxic cell death and further increased extracellular glutamate concentrations.

Neurodegenerative diseases
Glutamate receptors’ significance in excitotoxicity links it to many neurogenerative diseases. Conditions such as exposure to excitotoxins, old age, congenital predisposition, and brain trauma can trigger glutamate receptor activation and ensuing excitotoxic neurodegeneration. This damage to the central nervous system propagates symptoms associated with a number of diseases.[40]
==================================================================
This article has much more detail and references to the Mouse Model in MS, but or and it refers allot to using Drugs to change the processes that involve Glutamate, rather than sorting out the original problem first!

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Nigel
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Aug 26, 2012 10:43 am

HappyPoet wrote:...Since to ask questions can be difficult for MS patients due to cognitive and other problems, it would be extremely helpful for patients if doctors, who recruit study participants from the Internet, would provide informative web pages about those studies. Detailed web pages would also decrease the amount of incorrect information shared among patients and study participants and decrease the number of questions asked by them.

Additionally, I don't believe anyone wants to scare patients into believing that traditional AO chiro isn't good enough or that because patients didn't get into this particular study, their cases are hopeless--an informative web page would help relieve much stress which is NOT good for MS patients and is associated with new brain lesions. While there's much that I (and others) would like to ask you about Dr. Rosa's study and his answers, I need to step off this Q&A merry-go-round... it's already making me dizzy!...


I have been in contact with Sharon Richardson of the CCSVI Alliance. I was told that the Alliance will be expanding to include other neurodegenerative diseases. They will also be including new information on CSF research, Atlas Orthogonal, NUCCA and Dr. Rosa's research among other things.

If anyone on this site has questions regarding the role of the upper cervical and lower spine in the cause of neurodegenerative diseases or the different methods used to correct and treat conditions of the spine, please let them know where they can find me. I will do my best to explain.
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Re: CCSVI and CCVBP

Postby SteveSnow » Sun Aug 26, 2012 11:30 am

Hello everyone

I'm new to TIMS and i have posted my query elsewhere

I've spoken with HappyPoet and she suggested i come here . Im not going to repost my query as i`ll probably get into trouble for junking the forum up

So heres the link instead :)

post197203.html#p197203

Any thoughts or suggestions would be great !!

Thanks

Steve
Last edited by SteveSnow on Sun Aug 26, 2012 1:49 pm, edited 1 time in total.
[cen]I have taken the liberty of setting up a live chat in the hope that people will come and chat with me about my wife's medical situation

http://webchat.quakenet.org/?channels=ThisIsMS[/cen]
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Aug 26, 2012 1:02 pm

Hello Steve,

I posted your question below.

"I am writing in desperation about my wife's condition. It all began a few months ago when she met with an osteopath for a major jaw alignment problem following some rough dental work. He felt her body alignment could be contributing to her problem and gave her a 6 week recommendation that would help realign her jaw and drop her raised left shoulder in the process.

However, after her first treatment where he "corrected" her right pelvis to make her leg 1" shorter she complained of feeling wonky and of severe jaw pain. He assured her it would all come good as he worked up. He manipulated her left side of back to release tense muscles he said, and performed a neck manipulation for supposedly the same on visit 3. She immediately went into severe spasm which pulled her face, chin and head in all directions and has left her in a very poor state. Her spine is now completely different and a large curve is developing fast. Her neck is completely twisted away from her body, has elongated and she has no chin as a result. Her head is raised and twisted away from her neck which is bending worryingly. Her jaw has been twisted the wrong way in spasm and her teeth no longer meet. She tried to have a splint made, but her jaw alignment was too severe for it to be done correctly. Her raised shoulder is now even more so and her collar bones are very uneven. Her tongue and windpipe have deviated in the process also.

I have no idea where to turn. Her neurosurgeon said he could only operate on a painful knee and she was left to live with the rest, which she is struggling to do as she worsens. The other departments we have gone to have either said it is too complex to treat or discharged her. She was convinced there must be another reason for her severe reaction. She wondered if her jaw infection from the dental work that triggered this whole thing off in the first place, has spread with the manipulations, but blood tests all came back clear. We didn't know if the infection was maybe in the muscles, if it would be picked up by blood tests alone and no one at the hospital would investigate further. The only other thing if it's not just protective spasm, would be neurological. But nothing was detected on MRI of the spine and cervical areas, and the neurologist could find nothing to indicate from the physical he gave her. A neurological chiropractor that she has seen thinks it is a misfiring cerebellum problem and that is why her body misread the adjustments she had. The maxillofacial team have discharged her for being too complex, I can’t but wonder as her jaw misalignment was her only initial problem before treatment, is this why she reacted so severely to treatment by the osteopath? Any ideas?? Thanks.

We live in the UK
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Aug 26, 2012 1:29 pm

Steve,
I accidently deleted my response to your question. I am heading down to the river for a swim. I will get back to you later today or early tomorrow.
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Re: CCSVI and CCVBP

Postby SteveSnow » Sun Aug 26, 2012 1:47 pm

Ahh thankyou Dr Flanagan . I was a little worried to re post here as i already started my own thread

Now that you have moved it here , perhaps a moderator would like to delete my thread as it appears its no longer needed

I await your thoughts on my wifes situation :)

Thanks and enjoy your swim

Steve
[cen]I have taken the liberty of setting up a live chat in the hope that people will come and chat with me about my wife's medical situation

http://webchat.quakenet.org/?channels=ThisIsMS[/cen]
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Aug 26, 2012 3:16 pm

Steve,
It's hard to believe that your wife could have developed such a serious TMJ problem due to a dental procedure, no matter how bad it was, especially since she never had problems before. What's further suspicious is that she also had a raised left shoulder and from what I gather according to the osteopath, a significant one inch difference in the length of her legs. You also said her spine is different since the treatment and a large curve is developing fast. It's further interesting that the cervical spine wasn't worked on until the third visit and that the problem started after the low back was worked on.

From what I gather so far, your wife has muscle spasms in the spine. The spasms can be caused by many things. I suspect your wife has a scoliosis. She may also have spondylosis. Rough treatment can cause wicked antalgic type muscle spasms in the neck and low back. Do you have any radiology or neurology reports?
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Re: CCSVI and CCVBP

Postby NZer1 » Sun Aug 26, 2012 4:05 pm

Hi Dr and Steve.
This reminds me of the Hairdresser syndrome you told us about Dr F, because of neck position and fear? I had a similar problem after having a broken tooth repair. Until I was able to free my neck muscle spasms I had all sorts of seemingly unassociated problems.
BTW. On the Plane tomorrow for the neck drainage Doppler and Consult with Dr Thibault, so many questions, I have a friend who is taking me and is a professional video photographer, so he will record due to my memory issues.

Regards,
Nigel
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Aug 27, 2012 2:19 am

The condition you are referring to Nigel is called Beauty Parlour Syndrome, which is a mini stroke or transient ischemic attack (TIA) of the vertebral-basilar arteries. Most TIA's are brief episodes of ischemia that recover quickly. They are blamed on dissection (tearing) of the arteries but I don't think they are due to tears so much as they are caused by compression such as tilting the head back over a hard sink to get the hair washed, looking up for prolonged periods or sometimes turning the head. These actions casuse compression deformation of the soft tissue tunnel called the suboccipital cavernous sinus, which contains the arteries. I discuss the importance of the suboccipital cavernous sinus throughout my book. Major strokes of the vertebral-basilar arteries are the least common and relatively rare. When they do happen they are very serious and exhibit clear signs and symptoms. In either case, mini or major strokes of the vertebral-basilar arteries don't cause the muscle spasms in the spine and face that Steve describes. Strokes primarily cause muscle weakness and neurological signs. Spasms are secondary effects that follow strokes due to involvement of nigrostriatal pathways (basal ganglia) etc. What Steve describes sounds like wicked muscle spasms. It is difficult to correct or change abnormal curves in the spine such as scoliosis and kyphosis. It's is impossible to cause one. On the other hand, pain in the spine can provoke wicked muscles spasms and what is called antalgic posture that cause the body to bend, twist and contort. The low back and neck are particulary susceptible to antalgia. I have treated many neck strains where the patient came in with their head locked onto one of their shoulders. I had tons of patients with sprains, strains and disc problems in the low back that casued them to stand and walk like the Leaning Tower of Pisa. I also personally experienced both conditions myself.
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Re: CCSVI and CCVBP

Postby SteveSnow » Mon Aug 27, 2012 3:04 am

Hi all thanks for your responses. It is sure a strange one. Some experts are suggesting she reacted so badly due to her jaw being misaligned badly to start with and this is the key to the problem.. I still feel the guy did the wrong side of her pelvis and made the short leg even shorter. Her right hip was initially higher and he made her left side lower still?? She now appears to have a long side and a short side to her body. Her left collar bone and shoulder are now higher than original and higher than her right side. She said she feels as if the top half of her body has spun away in the opposite direction from the bottom half. After she suffered the initial screaming spasms she went through the guy said he would put her pelvis back to its original position and pushed the opposite back a couple of times. This is what really made a mess of her. She started off with a very mild S curve in her spine that then became a C curve. Where her back used to curve in it now protrudes out and vice versa in other places. She can't sit straight, her legs go to the left, her top half goes to the right with her head tipped left usually. You can see the neck muscles are clearly pulled over to the right side and running very unevenly. She has been given Baclofen muscle relaxants which are having no impact, but is this spasm? She is not in constant agony, just in a very odd position. Would spasm not hurt her all the time? She said she has strange muscle sensations down the left side of her spine and muscle tremors, mainly all down her left side too. Her left knee is cracking and her foot has turned outwards. She has lots of problems with her left arm, hand and shoulder trembling and weaker. The Mri's did not show anything sinister, linked below, and the neurologist has no ideas. The MRIs did not show her severe jaw deviation, but we did not get to see the films. It is most definitely very twisted, you can see it in her face. Even her face muscles are working in opposite directions?? Any further ideas. Stroke was ruled out , the A&E department did all the strength and reflex tests etc when we took her in in an ambulance . But strangely they did not Mri her brain, just the brainstem.

Its just frustrating because the osteopath was always saying that this problem wasn't permanent and that he could " fix " it . Perhaps we were just naive and trusted an osteopath with 30 years experience . He started manipulations at the bottom (Pelvis) and these manipulations were suppose to work their way up her back and correct everything on the way

I for one now don't trust the guy to do anything else on my wife , this is why im now on here annoying you guys :lol: . We have been told from other people that the area should ALWAYS be "warmed up" before any manipulations or crackings are done . He didn't do any of this

He never told us about the risks of cracking her neck before he did it which apparently he is suppose to . He told us when we questioned him that he tends not to explain the risks of a neck manipulations in case it " panics " the patient and tenses them up

Luckily enough we live in the middle of the UK so i can get her to Scotland or London if we can actually find someone who has experience of this problem

My wife has had a total of 4 MRIs and the reports are below

http://i294.photobucket.com/albums/mm10 ... s/MRI1.jpg

http://i294.photobucket.com/albums/mm10 ... s/MRI2.jpg

http://i294.photobucket.com/albums/mm10 ... s/MRI3.jpg

Thanks

Steve
[cen]I have taken the liberty of setting up a live chat in the hope that people will come and chat with me about my wife's medical situation

http://webchat.quakenet.org/?channels=ThisIsMS[/cen]
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Aug 27, 2012 5:32 am

Steve,
As I suspected, your wife has extensive spondylosis in the cervical and lumbar spine. She also has a reversal of the lower curve in the lower cervical spine called a kyphosis. Although it isn't mentioned in the reports, I suspect she also has some scoliosis as well. The increased intensity signal across of the dens of C2 is mostly likely due to chronic ischemia or edema as a result of obstruction to blood and CSF flow through the area, which is effected by the spondylosis below it and most likely upper cervical misalignment above. Rough treatment of patients with spondylosis can cause the severe type of muscle reactions and spasms you describe such as torticollis and tortipelvis. Once provoked, joints and connective tissues of the spine can stay irritated for prolonged periods of time due to the constant demands on them. If I were treating your wife, I would be use deep heat, combination ultasound or electrical muscle stimulation to calm the effected overexcited and irritated muscles. I would also use non-force craniosacral treatment of the cervical and lumbar spine to restore motion, function and alignment as much as possible. Although it might need some attention under the circumstances, the TMJ has nothing to do with the cause of your wife's current condition. She has significant preexisting extensive degenerative changes in her spine that were aggravated by her head, neck and jaw position during the dental procedure that were made much worse by rough manipulation of the spine.
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Re: CCSVI and CCVBP

Postby SteveSnow » Mon Aug 27, 2012 5:53 am

So you do think this is spasm? And it is treatable? She is of the opinion she is beyond help altogether and has no fight left in her to deal with this. The second lot of "corrective" manipulations to her pelvis were done after the mris when she was given the all clear to carry on treatment by the doctors. So should they and the osteopath have know better and advised against more manipulations to try and treat the problems. It was these manipulations that sent her over the edge and she lost complete lordosis of her cervical area and spine. Do you know of anyone in the UK who deals with your suggested treatments that you could recommend? We are very curious as well to why her tongue is extremely out of place as well. It has not just deviated, its whole placement is wrong. Baffling. Several therapists here said she wasn't in spasm when they checked her over, the lack of pain now is one reason they gave, is there a way to know for sure? Would the osteopath not have known she was in spasm because he would surely have stopped treatment wouldn't he if she was? It is literally like her head has been pulled off her neck and rotated, but everyone states this isn't possible, but that's sure what it looks like to us. She appears to sit and walk on a slant, its very frightening what has happened to her. Her jaw is so bad now no one has been able to make a splint for her. Her whole body has lost it's original position. Thanks so much again. Please see the link for tmj etc, this is what I based my query on regarding the experts etc. and this from an American dentist I received:

From what you describe it appears that your wife has a cranial distortion, which most likely was caused by the dental procedure(s). Since the cranial misalignment was the major, adjusting the pelvis, spine and neck are only addressing the compensations. An infection, if present, often affects the thyroid, which makes muscles and ligaments weak causing all kinds of structural distortions. The response made by the orthopedic consult is very misleading and tantamount to disinformation. Structural misalignment (a posteriorly rotated pelvic bone) can shorten a leg.
A comprehensive evaluation is needed to determine the cranial misalignment, tissue pH (most pain patients are too acid, which lowers their pain threshold) and presence of infection. Following conventional wisdom will only guarantee you chasing your tail.
Your wife really needs a dentist who knows cranial and occlusal concepts. Treating anything below is a waste of time. I have a patient who flies in from Manchester every two months for treatment. He ran around the globe for 14 years looking for answers. In three days I made a dramatic improvement in his 14 years of chronic pain.

http://www.standard.co.uk/lifestyle/hea ... 64060.html
[cen]I have taken the liberty of setting up a live chat in the hope that people will come and chat with me about my wife's medical situation

http://webchat.quakenet.org/?channels=ThisIsMS[/cen]
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Re: CCSVI and CCVBP

Postby SteveSnow » Mon Aug 27, 2012 6:35 am

By the way, does anyone have an opinion on Baclofen? She is showing no improvement at all, how long should it take to work if it's going to and can anyone think of a stronger one if possble? Would botox injections be worth look into Dr Flanagan? Thanks.
[cen]I have taken the liberty of setting up a live chat in the hope that people will come and chat with me about my wife's medical situation

http://webchat.quakenet.org/?channels=ThisIsMS[/cen]
SteveSnow
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Aug 27, 2012 7:56 am

Steve,
You can't diagnosis muscle spasms simply by the presense or absence of pain according to the patient. You have to palpate (touch) the muscles for tone and tenderness, as well as check for weakness etc. Antalgia is a term used to describe a body posture that leans away from pain. Irriation of spinal joints can cause antalgic leans. Your wife has lateral stenosis and is probably leaning away from the side of stenosis. It absolutely impossible to cause a cervical kyphosis by manipulation. You would have to break the neck, which would cause obvious signs. While TMJ splints can be helpful in cases of upper cervical misalignments they are rarely required if the spine is corrected properly. Moreover, the TMJ is a non-weight bearing joint and has nothing at all to do with spondylosis, kyphosis, scoliosis or pelvic obliquity in the lower spine and pelvis. You have to jump through a lot of hoops to accept that theory. Nothing anyone does will make the spondylosis go away. Spondylosis requires case management according to the particular needs. If you are interested, Dr. Heidi Grant is a NUCCA doctor located in London. Her practice is strictly limited to upper cervical correction. She also has a diplomate in neurology. In the meantime you could try either hot packs or ice at home to calm the muscles down. Hot packs soothe spastic muscles. Ice gets rid of pain and inflammation from irritated joints in the spine. I use special herbs as well but I won't get into that here.
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