CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby uprightdoc » Mon Dec 05, 2011 5:09 am

Upright MRI is the best way to assess Chiari 1 type problems, which among other things, can be caused by trauma and tethering of the cord. Spondylosis (degeneration) of the spine causes scar tissue that can tether the cord and traction the brainstem pulling it downwards towards the foramen magnum and base of the skull. Flexion and extension upright cervical MRI are also good options to check dynamics of the brain and cord which may come in contact with the clivus of the base of the skull during neck flexion. You probably get the Lhermitte's sign because of the spondylosis in your cervical spine. I have x-rays of another rugby scrum injury I have permission to use. His disc is worse than yours and the picture of the scrum and the subsequent x-ray of cervial spondylosis perfectly underscores the point.
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Re: CCSVI and CCVBP

Postby THEGREEKFROMTHED » Mon Dec 05, 2011 7:14 am

uprightdoc wrote:Upright MRI is the best way to assess Chiari 1 type problems, which among other things, can be caused by trauma and tethering of the cord. Spondylosis (degeneration) of the spine causes scar tissue that can tether the cord and traction the brainstem pulling it downwards towards the foramen magnum and base of the skull. Flexion and extension upright cervical MRI are also good options to check dynamics of the brain and cord which may come in contact with the clivus of the base of the skull during neck flexion. You probably get the Lhermitte's sign because of the spondylosis in your cervical spine. I have x-rays of another rugby scrum injury I have permission to use. His disc is worse than yours and the picture of the scrum and the subsequent x-ray of cervial spondylosis perfectly underscores the point.



THATS great that there are diagnostics, but what and how to treat?
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Dec 05, 2011 7:33 am

There are many logical solutions ranging from specific chiropractic intervention and spinal decompression, to vascular intervention followed by possible shunt and decompression neurosurgery. There are also some excellent options in endoscopic neurosurgery that are available now, that would take too long to explain here, and they keep getting better each year. At this time we need to triage or prioritize the methods of intervention or combination of interventions make the most sense in an order that goes from the least to the most invasive. To reach a consensus, we have to first understand the problem. Radiology is providing many of the answers.
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Re: CCSVI and CCVBP

Postby EJC » Mon Dec 05, 2011 2:55 pm

Dr Flanagan,

Cast your eyes across this thread:-

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18524.html

From what I've read on your website and your replies here I get the feeling you and the Dr in the thread link above are onto the same thing.
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Re: CCSVI and CCVBP

Postby Sunnee » Mon Dec 05, 2011 3:57 pm

EJC,

I only saw the same thread several days ago and thought exactly the same thing.
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Dec 05, 2011 10:29 pm

"from post182148.html#p182148"

I am impressed that this has come to light.

IMO it identifies the key factor for us all,

CORRECT DIAGNOSIS

Nothing more nothing less. We each have our dysfunctions and we will each have opportunities to better health. There is no one size fits all, there is need for correct dx.

Who can step up and give us this?

Regards Nigel

PS, thanks Dr F its funny so to say, had another extremely stressful day today, not personal life for once, and as you can imagine the team of CM1 symptoms are flashing at me like dogs balls. Funny that it has taken so long for me to understand and look into what you have been telling me. Must have spent too much time assuming I was like others here and on the 'Dr S' thread. Any how have been talking and getting progress on having my old MRI's reviewed and working towards access to the Neuro to look at CM1 as primary focus.
DX is so important !!!!!!!!!!!!!!!!!!!!!!!!!!
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Re: CCSVI and CCVBP

Postby NZer1 » Tue Dec 06, 2011 12:45 am

As a simple observation all,
I have had the day from hell, for one of us, sitting in a court room for 5 hours and basically not moving much. The key thing in my observation is that I looked left and right most of all.

I have come home and spent too long on the computer catching up with research, gossip and on posting.

As much as I think I am tired from my day I have become aware that I have always gone out for walks with my ever loving Sage (the dog) when I am symptomed out.

Today in particular it has hit me that what I do works. We go down to the stream and watch the world go by.
We look left and right non stop as there is always something happening, fish, birds and so on.

The bottom line is that I am NOW aware that my neck noise quietens after a half hour break, my head aches resolve, my thinking in general clears and so on.

Do I create my symptom overload looking and sitting being inactive because of a self compounding de-generation?

Is decompression tables doing the same thing as sitting at the stream?

Keeping us mobile (not fit), simply moving our necks regularly, in a way that relieves the flow issues for CSF? etc.

Regards Nigel

Sorry need to amend what I have said about the noise from my neck when turning, the moving passively left and right changes the resistance feeling prior to the noise, because I am simply moving often. If I move less when I do move the noise is load when I cross over the resistance which creates the clonk noise.
The head aches and feeling of a full head are definitely minimal because of the kneeling and watching back and forth. So kneeling at stream and watching the world go left and right and walking back and forth to my spot does make a massive difference.
Its amazing how description makes the difference, when we describe our experience in the magic 20 mins or 'half hour' can we be understood?
Can the main streamers paint our picture, that we have described?
Thanks for your time Dr!
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Dec 06, 2011 2:43 am

That's interesting Nigel that you had a day from hell. I have had a week or so from hell which isn't so bad compared to the last time this happened. The last time, I had a reaction like this the signs and symptoms lasted well over a year. But this time I caught the culprit red handed at the scene of the crime and I have expert witnesses including before and after x-rays. This time I new exactly what caused the facial pain and swelling and was ready with both an antidote for the toxin and a remedy the side effects, which I successfully put together and used previously. Nonetheless, I spent several sleepless nights due to glutamate cascades, excitotoxicity and neurotransmitter malfunctions causing trigeminal neuralgia, low back spasms and resting tremors in the right leg, shoulders and hands. I used my sleepless time to write a short book, which is nearly complete. Hopefully it will bring the issue to light and help others similarly injured.

While that was happening my mother-in-law was recovering from a stroke that resulted in the loss of her right side and speech etc. She is 92 and has a bad habit of sleeping in chairs with her head slumped forward. I suspect it caused the stroke. As I mention in my book, strokes cause glutamate or ischemic cascades which cause more problems afterwards than the initial stroke. The good news is I got the report and she has no new injuries or infarcts. She is seeing stroke therapists and I had them put together a makeshift mirror box for her to use which significantly speeds recovery. Most of her symptoms were due to brain swelling. Brain swelling following strokes causes problems similar to a Chiari 1. The downward pressure affects cranial nerves in jugular foramen and hypoglossal canals. Consequently, I also had her drink plenty of tea because diuretics are helpful for reducing brain swelling. So far it looks like she will have a complete recovery.
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Re: CCSVI and CCVBP

Postby Sunnee » Tue Dec 06, 2011 9:30 am

Uprightdoc,

Back in UK and on ms society boards there was a gentleman that was an avid believer in HBOT therapy (a diving chamber thingy) I always wondered why it had such a positive affect. could it be something to do with blood circulation, praps thinning of the blood, or am I way off base

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Re: CCSVI and CCVBP

Postby THEGREEKFROMTHED » Tue Dec 06, 2011 1:28 pm

uprightdoc wrote:That's interesting Nigel that you had a day from hell. I have had a week or so from hell which isn't so bad compared to the last time this happened. The last time, I had a reaction like this the signs and symptoms lasted well over a year. But this time I caught the culprit red handed at the scene of the crime and I have expert witnesses including before and after x-rays. This time I new exactly what caused the facial pain and swelling and was ready with both an antidote for the toxin and a remedy the side effects, which I successfully put together and used previously. Nonetheless, I spent several sleepless nights due to glutamate cascades, excitotoxicity and neurotransmitter malfunctions causing trigeminal neuralgia, low back spasms and resting tremors in the right leg, shoulders and hands. I used my sleepless time to write a short book, which is nearly complete. Hopefully it will bring the issue to light and help others similarly injured.

While that was happening my mother-in-law was recovering from a stroke that resulted in the loss of her right side and speech etc. She is 92 and has a bad habit of sleeping in chairs with her head slumped forward. I suspect it caused the stroke. As I mention in my book, strokes cause glutamate or ischemic cascades which cause more problems afterwards than the initial stroke. The good news is I got the report and she has no new injuries or infarcts. She is seeing stroke therapists and I had them put together a makeshift mirror box for her to use which significantly speeds recovery. Most of her symptoms were due to brain swelling. Brain swelling following strokes causes problems similar to a Chiari 1. The downward pressure affects cranial nerves in jugular foramen and hypoglossal canals. Consequently, I also had her drink plenty of tea because diuretics are helpful for reducing brain swelling. So far it looks like she will have a complete recovery.



sorry doc....one scary thing occured to me. My father religiously fa,,s asleep in his lazy boy head slumped over almost like a narcolept every night he returns from work...
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Dec 06, 2011 2:51 pm

Sunnee,
Pressure chambers are used for hyperbaric therapy to treat altitude and diving illness for the same reason. When pressure drops such as at high altitude or coming up from a deep dive, gasses in the blood come out of solution too quickly, which can cause many problems such as decreased blood flow and edema among other things. It can also cause emboli which block blood flow.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Dec 06, 2011 3:04 pm

THEGREEKFROMTHED wrote:sorry doc....one scary thing occured to me. My father religiously fa,,s asleep in his lazy boy head slumped over almost like a narcolept every night he returns from work...


It's not good for the carotid arteries or the vertebral arteries for seniors to sleep like that. It's asking for trouble. When my mother-in-law was up to visit last summer I put her in an Adirondack chair. It's a comfortable classic camp lounger that forces you back in your seat which is pitched steeply downward. Mine also have high backs to support the head and wide arms to support the arms and a cup of coffee. I knew she got into the seat she couldn't get out unless she called me to help her. It's very stable and she couldn't fall out to the sides because of the big arms and when she did fall asleep it kept her head back. She is an avid reader at 92 so I stuck her out on the front porch where she was shaded from the warm summer sun and invigorated with fresh moutain air. She was a happy camper and it kept her out of trouble.
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Checking Atlas etc after CCSVI treatment

Postby MarkW » Thu Dec 08, 2011 10:25 am

Hello Uprightdoc,
Maybe you have read my story. My take on MS is that it is a multifactorial disease and you treat what is treatable. Having had two procedures for CCSVI I am pretty sure that my vein valves are open. A next step for me is to check that my atlas vertebrae is correct and neck is aligned. I want to see evidence (probably x-ray) before I have treatment but not sure what to look for. I have read EJC's thread about the UK based dentist but am unsure if it a good idea to add the jaw into the diagnosis. Thoughts please on what to look for, as there are commercial groups advertising atlas realignment for around 150 gbp, which seems to cheap to include x-rays.
Thanks,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Checking Atlas etc after CCSVI treatment

Postby uprightdoc » Thu Dec 08, 2011 12:12 pm

MarkW wrote: ... My take on MS is that it is a multifactorial disease and you treat what is treatable. Having had two procedures for CCSVI I am pretty sure that my vein valves are open. A next step for me is to check that my atlas vertebrae is correct and neck is aligned. I want to see evidence (probably x-ray) before I have treatment but not sure what to look for. I have read EJC's thread about the UK based dentist but am unsure if it a good idea to add the jaw into the diagnosis. Thoughts please on what to look for, as there are commercial groups advertising atlas realignment for around 150 gbp, which seems to cheap to include x-rays.


Hello Mark,
I have no idea what method the dentist is using but the theory is over seventy years old and so is upper cervical chiropractic which has decades of refinement and input from experts. There is a physical therapist in Europe also claiming to have discovered atlas correction. The theory of TMJ is equally old and goes back to the beginning of craniopathy. Craniopathy has been used by chiropractors and osteopaths to treat TMJ for decades. I have successfully treated many TMJ case without the need for panoramic x-rays or splints. My success was due to the fact that I worked on the entire musculoskeletal system of the skull and upper cervical spine along with the rest of the spine.

I will go back and re-read your history again later when I get some time and get back to you.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Dec 08, 2011 2:44 pm

Mark,

I extracted the following information regarding your case from the news article.

... my right foot has felt cold to the touch and been purplish in appearance for many years.

I am 51 years old and I have multiple sclerosis (MS). The first symptom – double vision lasting several weeks – developed in November 1991, although I did not receive a definitive diagnosis until April 1997. By 2000, I had accumulating symptoms including numbness, balance and bladder problems and a general feeling that, while it might not be yet apparent to my friends, MS was slowing me down in every way.

In January 2003, I was hit by physical and mental fatigue so debilitating that I could hardly get out of bed. I was forced to give up my much-loved job as a management consultant with IBM, something that left me depressed. I have never recovered sufficiently to return to work. Despite treatment with conventional drugs and therapies, my MS progressed steadily, with mobility on my right side increasingly impaired, and I have had several serious relapses when symptoms have increased in severity. As a qualified pharmacist, I have used my scientific knowledge to research the disease and its management thoroughly. I am what doctors call an “expert patient”. After 20 years of living with MS, I am willing to try any safe, logical therapy.

I was the 45th MS patient to be seen by Constantinos “Costas” Kartkaletsis, a consultant vascular surgeon ... Restrictions were diagnosed in four major veins (the azygos vein, hemi-azygos, and the left and right internal jugular veins) in the trunk and neck, and all were treated using balloon venoplasty over three hours.

I had not expected any immediate impact, but ... the improved condition of my feet next morning left me elated ... Back home, I planned complete relaxation for two months. I decided not to try to record frequent changes but to note trends on a monthly basis, as MS symptoms can vary daily.

At the end of the first month I felt my concentration had improved ... I no longer needed regular naps and that I focused better on conversations. After three months, I felt I was functioning mentally at least as well as I was a decade ago ... There were other changes, too: I’d had neuropathic pain (caused by damage to the nervous system) in my right leg for many years. That went and has not returned. After years of not recalling my dreams – an observation reported by many with long-term MS – I have, for the past six months, remembered them again. My need to get up at night to urinate also improved slightly, from three to six times to one to three times a night – something much appreciated by my wife.

My walking and balance have not changed over the past six months, and I still rely on my Musmate walking aid and trekking poles to get about. But, on the plus side, my osteopath ... reports gradual improvement in muscle tone, stiffness and spasm in my neck and back. He says my neck muscles felt ''matted, congested and were indistinguishable.’’ but after the venoplasty ''the matted sensation reduced and the palpability of individual muscles increased”.
Last edited by uprightdoc on Thu Dec 08, 2011 2:56 pm, edited 1 time in total.
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