CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby NZer1 » Tue Oct 09, 2012 12:43 pm

Another interesting conclusion by people wanting to find a one hit answer.

Abstract
OBJECTIVE:
The aim of this study is to report the clinical profile and outcome of longitudinally extensive transverse myelitis (LETM).
METHODS:
We prospectively studied adult patients who presented with LETM from January 2008 to December 2011. Information on demographic, clinical course, magnetic resonance imaging (MRI) and outcome was collected. HLA-DRB1 genotype was compared with those of 225 normal controls and patients with MS (228) and neuromyelitis optica (NMO) (22).
RESULTS:
In total, 23 patients (16 female) with a median age of 44.5 years (range: 20-77 years) were included. Most (74%) had moderate-severe disability at nadir (48% non-ambulatory), normal/non-multiple sclerosis (MS) brain MRI (96%) and a median MRI cord lesion of 5 vertebral segments (range: 3-19). Laboratory analysis showed cerebrospinal fluid pleocytosis (45%), NMO-IgG (9%), antinuclear antibodies (70%), and genotype HLA-DRB1*13 (57%). The frequency of DRB1*13 genotype was higher compared with controls (p=0.002), MS (p=0.001) and NMO (p= 0.003) patients. After a median follow-up of 32 months, one patient converted to MS, two had relapsing LETM with NMO-IgG, and 20 remained as idiopathic with recurrences in four (20%). Twelve (52%) patients recovered with minimal disability (Expanded Disability Status Scale (EDSS) <2.5) and three (13%) remained wheelchair dependent. Disability at nadir was associated with the final outcome and extension of the spinal cord lesion with risk of recurrence. Recurrence was not associated with worse outcome.
CONCLUSIONS:
Inflammatory LETM is mostly idiopathic with a good outcome. It includes a relatively homogenous group of patients with an overrepresentation of the HLA-DRB1*13 genotype. EDSS at nadir is a predictor of the final outcome and extension of the myelitis of the recurrence risk.
http://www.ncbi.nlm.nih.gov/pubmed/23037550
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Re: CCSVI and CCVBP

Postby blossom » Thu Oct 11, 2012 9:15 pm

hi dr. flanagan, you may have explained this to me before but i am having a "duh" moment. i know that if i should get the cervical spurs removed and the stenosis taken care of i would have better blood and csf flow. no guarantees of anything else. hopefully it will take pressure off any nerves that could be being compromised. -- one of my chiro.'s had told me that there are cervical nerves that effect the feeling of pain and nerves that effect mobility. explaining that just because i don't have bad neck pain mobility could be being effected. is that the way you would put it? and from what you have seen of my x-rays and mri's would you think this could be a possibility. helping to explain some of my symptoms depending on positioning. also, cervical can just about effect pretty much the whole body even heavy leg bladder etc. ?

as always i appreciate your patience and input.
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Oct 12, 2012 2:38 am

Hello Blossom,
The spinal cord has sensory and motor tracts. For simplicity sake, the sensory tracts are mostly on the back side of the cord toward the rear of the spinal canal close to the ridges of bone you see on the back. The motor tracts, which control muscle and movements, are located toward the front of the cord next to the front of the spinal canal. The front of the spinal canal is formed by the square-like blocks of bone called the vertebral bodies. The vertebral bodies of the spine are separated by cartilage called discs. Your vertebral bodies, discs and connective tissues in the front of the spinal canal have degenerated, which is called spondylosis. Calcium has deposited on those tissues and turned them into spurs that protrude into the front side of the spinal canal. They protrude to the point that they almost but not quite touch the motor side of the cord. The protrusion makes your canal more narrow, which is called stenosis. When you flex your chin toward your chest the spurs get closer and may even contact the cord. The space between the spinal canal and cord called the epidural (over the dura) space contains the vertebral veins. Spurs effect blood flow through the vertebral veins. It also puts back pressure against arterial blood flow to the cord. Lastly, I suspect it indirectly effects CSF flow by decreasing the inside dimensions of the spinal canal. The bladder can be effected by problems in the upper or lower autonomic nervous system. In any case, all motor and sensory information between the bladder and brain pass through the cervical spine.
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Re: CCSVI and CCVBP

Postby blossom » Sat Oct 13, 2012 4:05 pm

thanks dr. flanagan. as usual your knowledge and words paint a clearer picture for me to digest and visualize and have a better understanding.
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Re: CCSVI and CCVBP

Postby neava » Mon Oct 22, 2012 12:10 am

hi dr flanagan,
as you know i have chiari type 2, and have had decompression surgery, symptoms so far seem to be reacuring, also a arachnoid cyst removal, in T7 - T10 which has now lead to scar tissue which has been confirmed as arachnoidits adheshive scar tissue, which most had been removed in june, ive just had another mri, last week, which shows i know have, a few small intervertebral body hemangiomas, all i know is this is also in the thoracic area as well, im unsure how many, or what specific area in thoracic, if even in the same area as where i seem to have issues, which seem to be T6-T10,
Could these have devolped due to the surgeries?, or just something else? what is the treatment from here, how dangerous are these? is threre any other option other than surgery? any info that you might have whould be fantasic, this is abit scarey,
so far my fluid seems normal, but i also see the surgeon on the 2nd of next month, but they seem to beat around the bush,
would you recommend certain type of questions?
thankyou

neava
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Oct 22, 2012 2:37 am

Hi Neava,
Hemangiomas are benign blood vessel tumors. The problem is that arteries pulsate and bang on the channels of bones they pass through. This increases the size of the channels which weakens the bones similar to osteoporosis. If it gets bad enough, weakness of the bones can lead to compression fractures and deformation of the vertebra (spondylosis). Depending on their location and size as well as the deformation they cause to surrounding bones, cartilage and connective tissues, hemangiomas can also decrease the size of the spinal canal and compress the cord (stenosis). From what you told me so far, it sounds like the hemangiomas in your cases are small and not causing symptoms. You need to find out how large and how aggressive they are. They may not be a problem and just require perodic monitoring to check their size and expansion rate if any. It they do become a problem there are two options. One option uses an endovascular approach to get to the site and attempt to pemanently block the blood vessel (embolize) in order to close it off and prevent further enlargement. They use chemicals or glues to block the blood vessel. The other approach uses radiation therapy to shrink the blood vessels.
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Re: CCSVI and CCVBP

Postby neava » Mon Oct 22, 2012 2:22 pm

thankyou for reply

i have had changes but its hard to know whether this is due to chiari, archnoiditis,
bowels are more urgent, and have had accidents, bladder issues have now devolped, seeing a urologist, next week,
balance is becoming worse, burning/numbness in soles of feet, (this is very recent issue, become daily now 24/7).
electric shocks in private areas are more regular,
lower back pain,
other issues but i think are more chiari as these where there before decompression and now returning,

i also read that early treatment is best due to permament damage that this can lead to,
so is it safe to say that i can be ok just be monitered over a period of time?

hows the new book coming along?
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Oct 22, 2012 3:03 pm

neava and Dr F,
I would strongly advise that you both look at the whole of life picture of the patient.
I think that things such as meningitis as a child and life issues effecting burdens of life shaping posture for instance and confirmation of previous Strokes give a boarder picture.
The process of surgeries gives me reason to suspect that the surgeries are causing ongoing compounding issues.
The symptoms grouping is shared by other 'diseases' and there is more testing to be done to clarify the vascular disease status and vascular flow ability before jumping to surgical attempts at symptom improvement, (the attempts seem to be causing problems not previously seen, a cascade effect!).
The cause of the historical symptom pattern may have been overlooked by using a mono time frame view instead of the entire outcome of a process of ongoing interconnected snap shots of health flares.
My favourite test to start with would be for CPn antibodies!

Regards,
Nigel
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Re: CCSVI and CCVBP

Postby blossom » Mon Oct 22, 2012 10:25 pm

nzer1, how are you coming along with the cpn antibiotic treatment? anything for the good?
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Re: CCSVI and CCVBP

Postby NZer1 » Tue Oct 23, 2012 12:06 am

Ho Blossom,
I am on to day 34 which means I have now started the second of the combination of ABx. That also means that the total effect of the two increases by about 25%. I have had an increase of symptom effect that is manageable and now that the second ABx has kicked in I am very low on energy, very achy and very weak. All good things IMO as it must be confronting an issue.
The whole process has been an amazing reminder of all the injuries I have had throughout my life, I have read that the CPn infects regions where there is tissue damage and inflammation from injury as well as from immune involvement. The CPn spores can combine with other cells eg immune and also macrophages and travel around the body, lodge in vein walls and also infect other areas such as cross into the CNS.
So that said I am feeling like shit and happy that I am!
I have no idea how long this ABx die off will last and have to wait it out and look after myself and keep physically moving. There will need to be a rehab and rebuild of my cells that die off in the process so it is a journey of unknown terrain!
Thanks for asking B, :), hope you doing ok too!
Regards,
Nigel
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Re: CCSVI and CCVBP

Postby SteveSnow » Tue Oct 23, 2012 2:05 am

Hi again Dr Flanagan.
I just wondered if I could pick your brain for more advice please. My wife has seen Dr Heidi Grant and is under treatment for a severely misaligned atlas. It shows her head is literally tipping off laterally to a very large degree, with rotational issues and now shows a complete reversal of the vertebrae. It is early days and she has seen no improvement as Dr Grant has to take it very slowly as she is in a bad way and she fears making her worse initially.
Dr Grant feels all her issues are resulting from this bad misalignment and if she can correct it, it should resolve the severe torque in her pelvis, her major jaw misalignment and spinal rotation and kyphosis etc.
Can I just ask your opinion on why adjusting her pelvis initially could have caused her atlas to get into such a mess and push her skull off so to speak? I am at a loss. I know the osteopath adjusted her wrongly and then to "correct" the problem he did more of the same and sent her into this mess, but even so could the pelvis cause all this?
And finally can the muscles and ligaments ever heal after such destruction if she can be helped at all. Does the atlas have the power to correct most of this? Can it overcome the pelvis manipulations? What are your thoughts please. 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 dania » Tue Oct 23, 2012 4:38 am

Hi Dr Flanagan. I have had 5 AO adjustments with Dr Rosa. With the first one I got huge improvements but I could not hold the adjustment more than a few days. All the other adjustments I had improvements but not as good as the first. I just cannot hold the adjustment any longer than 5 days. I guess I have been out of alignment for too many years. After talking with others that are receiving AO adjustments their story is the same as mine.And they all say that the had the best results with the first adjustment. I just started taking Lisinopril and it is helping many of my symptoms. What I am wondering if putting a shunt in like the do for babies with hydrocephalus could that help people like me?
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Oct 23, 2012 4:47 am

neava wrote:thankyou for reply

i have had changes but its hard to know whether this is due to chiari, archnoiditis,
bowels are more urgent, and have had accidents, bladder issues have now devolped, seeing a urologist, next week,
balance is becoming worse, burning/numbness in soles of feet, (this is very recent issue, become daily now 24/7).
electric shocks in private areas are more regular,
lower back pain,
other issues but i think are more chiari as these where there before decompression and now returning,

i also read that early treatment is best due to permament damage that this can lead to,
so is it safe to say that i can be ok just be monitered over a period of time?

hows the new book coming along?


Your welcome.
You have problems form stem to stern. The combination of a Chiari malformation, arachnoiditis and hemangiomas in the thoracic spine make me suspect you have spinal problems such as scoliosis or spondylosis effecting fluid mechanics in the cranial vault and spinal canal. There is an association between Chiari malformations and scoliosis. Do you have x-rays of your spine?

Early treatment of hemangiomas prevents complications such as compression fractures or compression of the cord. The radiologist will be able to determine how aggressive they are at expanding or not. It they are small and remain small they may not be a problem.

Unfortunately the new book was delayed due to unforseen circumstances. On a good note, it opened a whole new chapter. We hope to get back to publishing soon.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Oct 23, 2012 5:06 am

SteveSnow wrote:I just wondered if I could pick your brain for more advice please. My wife has seen Dr Heidi Grant and is under treatment for a severely misaligned atlas. It shows her head is literally tipping off laterally to a very large degree, with rotational issues and now shows a complete reversal of the vertebrae. It is early days and she has seen no improvement as Dr Grant has to take it very slowly as she is in a bad way and she fears making her worse initially.
Dr Grant feels all her issues are resulting from this bad misalignment and if she can correct it, it should resolve the severe torque in her pelvis, her major jaw misalignment and spinal rotation and kyphosis etc.
Can I just ask your opinion on why adjusting her pelvis initially could have caused her atlas to get into such a mess and push her skull off so to speak? I am at a loss. I know the osteopath adjusted her wrongly and then to "correct" the problem he did more of the same and sent her into this mess, but even so could the pelvis cause all this?
And finally can the muscles and ligaments ever heal after such destruction if she can be helped at all. Does the atlas have the power to correct most of this? Can it overcome the pelvis manipulations? What are your thoughts please.


Steve,
It is very difficult to make changes and correct the spine. It is impossible to cause scoliosis, kyphosis or pelvic misalignments no matter how rough the manipulation by the osteopath was. Instead, your wife has curvature problems in the spine. Abnormal curvatures are mechanical strains that impose abnormal loads on the muscles and joints, which stress and strain them. Stressed and strained muscles and joints cause inflammation and pain. The osteopath irritated the muscles, connective tissues and joints.

Correction of the upper cervical spine can help realign and relieve pelvic strains but I prefer many other more effective full spine methods. The pelvis is complicated and can be effected by many things in the lumbar spine and lower extremities. I use counter-strain methods to correct or relieve lumbopelvic strains. Just as upper cervical problems can cause pelvic strains, pelvic misalignments can likewise cause problems in the upper cervical spine.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Oct 23, 2012 5:23 am

dania wrote:I have had 5 AO adjustments with Dr Rosa. With the first one I got huge improvements but I could not hold the adjustment more than a few days. All the other adjustments I had improvements but not as good as the first. I just cannot hold the adjustment any longer than 5 days. I guess I have been out of alignment for too many years. After talking with others that are receiving AO adjustments their story is the same as mine.And they all say that the had the best results with the first adjustment. I just started taking Lisinopril and it is helping many of my symptoms. What I am wondering if putting a shunt in like the do for babies with hydrocephalus could that help people like me?


Hi Dania,
As you know, the condition of your spine poses a huge challenge to say the least. Your question regarding shunts is a good one and timely. I will be covering the third ventricle in the next post on my website, which will be followed by a post on endoscopic third ventriculostomy. ETVs are internal shunts rather than external shunts. I believe venoplasty, stents and shunts will be a part of the solution to improving blood and CSF flow in certain cases of neurodegenerative diseases. There are other potential therapeutic and surgical solutions as well that need to be considered and studied once we better understand the full rammifications of imparied fluid mechanics in the brain and cord.
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