This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,
I can't speak for NZ as such, what I can say is my experience with seeking testing and treatment. The idea of CCSVI has been looked at by Neurology through the eyes of other Nations.
If USA and UK say it's not associated, NZ followed. If USA and UK say that MS is Autoimmune, NZ followed. If USA and UK said studies were required to prove that there was such a thing as CCSVI, NZ followed.
We (all of NZ, the Medical people and PwMS), have been on hold so to say waiting for other National MS Societies to make the call, we don't have the volume of PwMS and we are influenced by propaganda.

There have been people treated in NZ by a forward thinking IR in the Capital who is not restricted by red tape like many Nations and was able to use Insurance Cover to treat several times. He is keen to learn and is limited for numbers of patients willing to pay whilst he learns. So NZ is able to treat CCSVI the issue is experience and support in learning. Keep in mind we have approx 4 million pop and an unknown but estimated MS pop between 4,500 and 8,000. So we are population size of a large overseas City!

Neurology firmly holds the MS franchise and they have not been pushed enough in my opinion to answer logical questions regarding the entire MS picture.

I personally have found that over time (Internationally) there are splits in groupings of PwMS, there are definite improvements for people in these groups, such as the CCSVI people, the Spinal Alignment people and the Bacterial Infection group.

The most challenging thing I see is to get Neurologists to acknowledge that what is known as 'MS' may need further defining and more time spent investigating how to measure the disease symptoms.

The connections to other diseases because of the symptom subgroups is unearthing some very important links. For example the CCSVI co-incidences of symptoms with Parkinson's and other de-generative diseases, or the Lyme and CPn infections and the co-incidence of an 'MS' dx, or the history of injuries and spinal alignment problems and the onset and co-incidence of 'MS'. And there is also some interest in the incidence of groups of symptoms that are common across PwMS such as Dyautonomia.

I am sure that if diseases such as Parkinson's was investigated 'properly' there would be similar findings.

I believe that NZ will be one of the easiest Nations to take up what ever methods or treatments become the best solution after the appropriate research and testing has the definitive results. Our Health system is Government funded and as such has restrictions and in most cases that has been for very good reason. NZ has often been involved in testing of research ideas because of our Population size and demographics. We don't have the large financial backers that other Nations have access to for research although we work in with many Nations in projects and MS is actually quite well involved as are other degenerative and ageing issues.

My point is that CCSVI needs to show what health issues it is causing and that is beginning to happen now.
MS needs to have a better dx system and more understanding of the causes, re-engagement of Neurology to Patients instead of Neurology's financial backers is required.
The two of these things can happen in tandem if Groups such as the CCSVI Alliance are able to direct learning and knowledge capture.

The other aspect will be to combine the Groups investigating and for them to think as a group not as individuals.

Nigel

My benefits are in large part now gone, and I never got the improvements in spasticity, heat-intolerance and loss of strength in leg and fingers on my left that would have really cured me.

I would go to see you in a heartbeat if I could drive. I also think I might benefit from endoscopic surgery on my third ventricle.

Another impediment, since October, has been an increasing infection in my left foot, now on my 4th course of longer and stronger antibiotics, with no blood testing, one set of x-rays, inconsistent care by a half-dozen or so traveling nurses, never being able to see my own doctor, nor the same doctor twice. It is a venous ulcer that started in a skin scratch, and I believe is now in the bones of my ankle (I have a history of childhood osteomyelitis). I think I have the circulation in that quadrant of my body, of someone much older, largely because of no driving. I have abandoned my wheelchair because of weakness and being able to use a walker.

Canada is in the grip of a gerrymandering election-stealing PM whose hero was Bush Jr., and would never offend big pharma. His government recently defeated legislation to speed nationwide CCSVI research, and in another bill, lower cost HIV drugs to Africa. I thought it was a different country I lived in, but I guess money can buy some things.

Is there a treatment, besides compression stockings, for CVI in legs?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Dr S,

I've spent the weekend thinking about the conversations on this thread and forum in general and I have a question specifically related to your understanding of the CCSVI procedure and improvements in eyesight. This is now the most debilitating symptom Emma has - double vision, poor ability to focus and eyes that at times seem to operate entirely independently of each other.

I know I've mentioned Emma's improvements before - her explanation was it was like switching from grainy old cable TV to the vibrance of HD TV at the flick of a switch.

I've read elsewhere on here that Cece also had a similar reaction.

How do you think this occurs? What is the mechanism that so instantly generates improvements?



On a related topic, my 78 year old father suffers from Myasthenia Gravis (one of the vast list of medical issues he has) for which he's prescribed Pyridostigmine tablets that pretty much deal with his issues (which interestingly are pretty similar to Emma's). He gave Emma one of tablets last week which after about a half hour straightened up her double vision and made things a whole world more comfortable. This last about 4 hours then receded - which we understand is about the operating window of that particular drug.

Any idea how this would be interacting with eyesight issues attributed to MS?

I thought I should mention that I think it is more than okay for Dr. Sclafani not to offer advice regarding the upper cervical care ideas. It is not his discipline (interventional radiology) and it is not proven. The burden is on those practitioners (Dr. Rosa, Dr. Amir) to prove their ideas. There is a different burden on Dr. Sclafani to prove his own ideas regarding CCSVI (the use of IVUS, the impact of renal vein compression on extracranial drainage, the existence and optimal treatment of CCSVI, etc).

Registries, randomized controlled trials. Funding. Presenting at conferences. Influencing other researchers. Sharing observations.

I see too a difference between our perspective as patients and a doctor's perspective as a doctor. We are individuals. We are most concerned about our own outcome, which we may already know if we've had the procedure done, and we may be in search of alternatives if we cannot afford another procedure or there was vein injury or our symptoms did not respond to the procedure. But to a doctor, there is always a chance for a fresh start in the next patient. Always a chance to get it right. So it is okay if Dr. Sclafani focuses on what he can directly do, which is get it right in the next patient. I think he has shown through his engagement with us here that he is a remarkably caring doctor. And to whatever extent he has been able to optimize his own techniques and influence other researchers in that regard, it is of great benefit to us collectively.

A good new year to all of us.

Hi everyone counting down ...........

Cece hope you have gotten over your cold I have to say that your comment above shows what the issue is for those of us who keep asking Dr S to look at the implications of Atlas Alignment in the CCSVI picture. We are not saying that Dr S needs to understand or even agree with any thing 'Chiropractic', what we are saying is that Frans Schelling has spoken for decades about back jets and reflux. Dr F has spoken about the issues of vascular flow that is effected by spinal alignment and now Dr Rosa is providing the Graphics for visualising the the issue and a way to correct it.
The issue that many have is with the title Chiropractic and they switch off!
What we are asking for is some testing and checking of what Franz is saying that the VV's and also all other Veins must be checked to identify the cause of 'MS Lesions' IT'S NOT JUST ABOUT VALVES OR ANY OTHER MALFORMATION THAT IS STATIC AND OR PERMANENT, some of which can be seen on MRI and some are not detected by low Tesla MRI due to their size.

It is these Lesions of Grey and White Matter that are the concern in 'genuine MS' cases.

The graphic that HappyPoet posted is the artist impression of what is happening, Dr Rosa's Upright MRI study is the actual visual. Dr F and Dr Hirshfeild have been writing articles for years. There are PwMS that are having positive outcomes of various durations after having 'Quality' Atlas Alignments.
So what we are saying is that Atlas Alignment is a factor in CCSVI as much as the Valve Malformations are.

The pieces below are also support of the understanding that the blockages and slow flow don't have to be constant. They are the issue when there is a volume of blood under pressure that is unable to travel to the Heart away from the brain due to temporary OR permanent restriction of flow. That causes the blood to accelerate back into the brain where the volume and pressure causes major damage at various times during life of PwMS because thos regions effected cannot cope with the Back Jets.


*** What we are asking Dr S to consider is how can we test and then treat VEINS in this predicament? ***


The link https://www.facebook.com/carol.schumach ... 2886632155

The key comments to get us thinking the same way without issues of Chiropractic involvement.
From
Carol Schumacher Via Alison: Dr Flanagan writes this about Dr Schelling's book:
"His book Multiple Sclerosis: The Image and Its Message, is a gem. It should be a primer for anyone seriously involved in multiple sclerosis research so that we are all reading from the same page."

http://www.ms-info.net/ms_040504.pdf

Franz Schelling It is FLEETING PRESSURE GRADIENTS arising in, and in between, different blood vessels, above all the UTTERLY FICKLE VEINS which are the worst threat to what is contained in the craniovertebral space. We usually don't even have an inkling of the forces which can thereby be exerted, especially on the part of veins.

Carol Schumacher It is this fleeting nature, caused by assuming certain positions for a prolonged period and then moving in a way to cause a forceful back-jet of blood. like stomping on the bulging part of a kinked hose. if there is a channel for the blood to escape it will follow that path and when the vein turns sharply that spot will be traumatized by the force of the jet and by turbulent flow. That is where Franz found the lesions in people with MS when he did his post mortem examinations. This is what he has been trying to get across for so long. Did I state it correctly, Franz Schelling? p.s. Happy New Year!!!


Franz Schelling All those pathologists who studied the way in which those lesion which are peculiar to MS spread actually showed damages which can only be brought about by retrograde impacts on the part of inner cerebral veins. I just realized that these impacts must have originated in forceful compressions of extracranial veins which cannot be duly emptied in direction of the heart ... Not having beed allowed to study these mechanisms at post mortem, I am happy Paolo Zamboni started investigating the problem in vivo - alerting to the fact that there remains all too much to be learned on the injuriousness of venous dynamic anomalies in the craniovertebral space. Engaging more gifted scientists and physicians in this field will allow more people who are suffering from, or concerned about, MS to become happy in our New Year. ))

Happy New Year Everyone from the first country in the World to experience it, Beautiful NZ

Nigel

In my opinion, all vision issues in ccsvi are (again) related to veins' congestion of the muscles involved:
Extraocular muscles do the eyes' movement and coordination, their dysfunction may cause diplopia
Iris muscle is responsible for how much light passes through the eye
(i remember i was still on the bed right after my ccsvi procedure, and suddenly the surgical light on the ceiling seemed too strong. Dr S was very happy about that!)
Then we have the optic nerve itself and the retina, they both have veins (but they are not muscles). When those veins are congested, there is loss of vision and optic neuritis.
Pyridostigmine helps normal muscle function, by preventing the breakdown of acetylcholine in our body.
Maybe this is how Emma had a quick amelioration in diplopia.

Happy New Year everybody!

_________________
getafix

What do the ophthalmologists think about that?

_________________
getafix

Can the effect of the atlas on the jugular be seen from the inside, i.e., in situ, while moving the head and looking at the vein, either with a fluroscope and dye, or with IVUS, at the same time?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

i think Dr S found this with my wife. the left jug was blocked by bone and i now suspect Atlas misalignment

Happy New Year, everyone.

Auld Lang Syne

Should auld acquaintance be forgot,
And never brought to mind?
Should auld acquaintance be forgot,
And auld lang syne!

For auld lang syne, my dear,
For auld lang syne.
We'll take a cup o' kindness yet,
For auld lang syne.

After my second CCSVI treatment, I could immediately read the smallest print on a pill bottle (the size that's too small for almost anyone to read). My ophthamologist said that was a common occurence. When the pressure on the eyeball changes, the eyeball can change its focal point.

Lol, yes. The flu! Every day I was heard to say, "I am really sick!" and the next day "I am really sick!" and the next day...
But I am on the mend now!

For me it was immediate, in the operating room, and it has been a lasting improvement. I am nearly two years out, and I am still staring at Christmas lights trying to understand how they can be so bright. The colors are also what's prompting me to get an hour of aerobic exercise every day. I experience fluctuations in how bright the colors are, and long duration exercise seems to keep the colors brighter. That's just an observation and not one I understand. I had a history of optic neuritis as well as uveitis but I do not see how venoplasty could improve optic neuritis or uveitis within minutes. What Pelopidas said about venous congestion of the eye muscles might be the explanation.

A month ago I got a desktop treadmill and since then most of my posts here have been made while walking. That's how I am getting the hour of exercise in.
That happened to me during my second procedure. It was as if the lights had been turned up. Brighter and whiter.
Diana Driscoll is an opthalmologist that is conducting some CCSVI-related research but I don't know if she's considered the venous congestion of eye muscles.

Auld Lang Syne, HappyPoet, very nice!

Can anyone doubt that there is excess pressure in the brain due to jugular stenosis? There are methods of measuring cerebral blood pressure depending on pressure in veins of the eye!

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I'm with you all here.

The only logical explanation for the instant improvements in sight are pressure release. Nothing else could provide that reaction?

So the question is, is angioplasty the only way to achieve "pressure release"?

EJC, I think the question has always been how do we test the Vascular System! It is very complex and is little understood!

If the tests show that there are issues in the system then we have some direction, at this stage the easy issues have been noticed and PTA is the first attempt at fixing those issues. The theories that are flowing from the early findings eg jugular and azygos impeded flows are showing how little is known about such an important function.

The entire system needs to be understood and looked at for secondary and other compounding effects of Vascular problems that have been isolated by testing.

Lets throw some Money at the problem and see what transpires,
Nigel