DrSclafani answers some questions

[Algis]

Fatigue, pain , ... are among things we can't quantify yet

[aliyalex]

I had only 1 cervical lesion for many years before fatigue began. I suspect my venous system became more and more insufficient.

it is nice to finally have some answers, after gropping n the dark for so long.

so, no question, just grooving on the answers and hypothesies.

[NZer1]

but there are patients without motor dysfunction who have fatigue. i cannot refute your hypothesis. I dont want to focus on it at all. i want to treat an obvious venous disease.

This would appear to mean that a published research paper with conclusion needs to magically appear and be accepted, stating that venous disease causes fatigue and can be relieved by Angio treatment?

there are papers that describe fatigue caused by venous outflow obstruction from superior vena caval syndrome, stenosis of jugular veins from dialysis catheter, and from ligation of jugular veins

fatigue has not been explained very well by any mechanism.

further the national ms society in us suggests as an off label use modafininl (provigil) as a treatment of fatigue. in the absence of conclusive data showing efficacy or even a mechanism of action

Not too sure where your thinking is going on this Dr. Way back on this thread when we were talking about study design, I put forward the idea to identify symptoms that benefited regularly from angio and to focus on these as a way to get support and involve more medical specialties. The idea seems to have raised its head again.
I still believe that the way forward with acceptance and Govt support is to identify one or two symptoms and use those as the reason for treating CCSVI. The work of Dr. Zamboni and his focus on his findings plus the work of Joan Beal on her findings,

gives reason to research the CCSVI understandings from a more, inclusive of other diseases (vascular component of strokes, Parkinson's, Alzheimer's, TM, and many, many more) approach.
*This approach showing the vascular involvement as the reason for the treatment and to stress that the knowledge from the outcomes is the most important aspect with ALLOWING angio treatment for brain drainage issues. The answers to why it is beneficial are not defined because prior research has not happened in a way that gives an understanding of the detail of the mechanisms, and the technology has not always been available.
*Treating and watching the outcomes gives quality of life whilst the learning increases. The risk to life is so small that to test in this way is very acceptable.
Most research studies have an idea that is purely theory and the experimenting done is to prove the idea. If it becomes commercially viable it gets the big tick and money to progress.
*The idea of treat and learn is foreign to the medical world but not to most other inventive learning elsewhere in the progressive world.
*This example of vascular issues in MS in particular is one of the few examples where treatment will not cause harm, it will not change the genetic structure, it will give learning and opportunity to help in many other medical problems that are just now being linked to vascular issues.
*I can only see positives for humanity, I can see resistance from commercial interests that will need to be regularly identified for what they are, and keep them under strict control.
Enjoy your day, regards all, Nigel

[NZer1]

An after thought, to the above comment.
If Vaccination for a disease that SOME will not naturally contract is acceptable, WHY is treatment of a population with a known vascular issue not possible.
The argument that there will be changes to the CHANCE of a person NOT having Alzheimer's disease by giving them treatment of their known MS symptoms does not hold water.
If you unknowingly 'avoid' Stroke problems from having your CCSVI veins attended to for MS reasons are you winning or losing?
How many medical conditions can be avoided? MS is often dx'ed with other diseases in the MS population, what if?
Back to my gardening, Nigel

[David1949]

Dr. Sclafani
Has anyone tested Chronic Fatigue Syndrome patients for CCSVI? CFS fatigue sounds kind of like MS fatigue. And MS fatigue I think is one of the symptoms that responds well to angioplasty.

[NZer1]

One study that I'm sure Marc would be interested in, would be the effect of CCSVI treatment on Frustration!

[drsclafani]

Dr. Sclafani
Has anyone tested Chronic Fatigue Syndrome patients for CCSVI? CFS fatigue sounds kind of like MS fatigue. And MS fatigue I think is one of the symptoms that responds well to angioplasty.

that is a good idea

[pklittle]

Dr. Sclafani
Has anyone tested Chronic Fatigue Syndrome patients for CCSVI? CFS fatigue sounds kind of like MS fatigue. And MS fatigue I think is one of the symptoms that responds well to angioplasty.

that is a good idea

Fibromyalgia fatigue is like CFS and MS fatigue too.

[drsclafani]

Dr. Sclafani
Has anyone tested Chronic Fatigue Syndrome patients for CCSVI? CFS fatigue sounds kind of like MS fatigue. And MS fatigue I think is one of the symptoms that responds well to angioplasty.

that is a good idea

Fibromyalgia fatigue is like CFS and MS fatigue too.

it would be quite interesting to compare these forms of fatigue. Perhaps it would be enlightening to compare the ultrasound appearances of these forms of fatigue. when i can i will

but, for the moment, i choose to focus on ms at its symptoms

[drsclafani]

Given symptoms, something should be done to improve intracranial outflow.

ok, i give up. i was hoping to entice you all into a technical discussion. i want you to understand the thought processes and the options possible. As there is currently no defined optimal method of treating the various problems associated with ccsvi, what follows is an indivicual case. One that i share with the concurrence of my patient. There is, to my knowledge no correct way to deal with this vexing problem. Perhaps what i have done may evolve into an accepted technique.

In this procedure, we had a very bad hypoplastic right jugular vein and an annular stenosis on the left side.

While some would attack the right side first, since it was not a very functional vein, i chose to treat the left side first. There is a good argument that treating the nonfunctional side first would be safer, i thought that fixing the easier side would make more sense. THERE IS NO CORRECT OR INCORRECT ANSWER.

UNTIL THERE IS, A RANDOMIZED PROSPECTIVE TRIAL IS UNETHICAL IN MY MIND.



In this case, annular constriction is a well known reason for ccsvi. It is the most common abnormality I see. The area of the valve, located at the confluens (junction of the subclavian vein and the internal jugular vein) is inflexible, does not dilate and inhibits good flow. Afterall, the system must expand to meet the flow requirements.

You can see the waist in the balloon which represents the area that is focally narrowed. It is a relief to see that the entire vein can stretch to accomodate the large sized balloon. I was worried about tears or ruptures and leakage of blood into the area. None have occures yet!

We had a good result when this 18 millimeter balloon was expanded under high pressure. Ultimately the balloon stretched the collagen based narrowing at site where you see inability to stretch.The contrast filled balloon is used periodically during this and other procedures to clarify pressue.

the predilatation image is on the left and the postdilatation on the right

Any comments or questions?

[Cece]

While some would attack the right side first, since it was not a very functional vein, i chose to treat the left side first. There is a good argument that treating the nonfunctional side first would be safer, i thought that fixing the easier side would make more sense.

I had assumed the hypoplastic vein was untreatable (like hypoplastic lumbar veins?). Does it respond to ballooning?

THERE IS NO CORRECT OR INCORRECT ANSWER.

UNTIL THERE IS, A RANDOMIZED PROSPECTIVE TRIAL IS UNETHICAL IN MY MIND.

This makes my "support all our doctors" line a little harder to deliver.

I'm so much more used to how drug trials are run; it has been eye-opening to see the differences when it comes to this.

I wasn't familiar with the term annular constriction so I found this:

Annulus: A ringlike structure, or any body part that is shaped like a ring. Applied to many small ring-shaped structures.

The base of a heart valve that supports the valve's leaflets is called the annulus.

[NZer1]

As I understand you question, which side first?
I would think that such a decision could only come from a negative experience. To assume that one is beating the odds, by using past experience.
If you look at it from the point of view that getting the simplest problems resolved first , one would assume that if there are 'issues' with the more complicated and you were unable to continue you have done the best/most you could prior.
If there was the possibility that the changes to one side will alter the other then there is study required to 'best approach'.
If there is issues with how must dye can be used before the patient is at risk then it would have to be assessed as a maximum benefit.
The other approach I heard used was to alternate start with the worse and see what changes happen whilst working on the other side, the settling time can give more insight to the success of the worst first. This sounds like it gives more insight to success and opportunity to go back and work again on the area.

[Rosegirl]

Dr. Sclafanai,

As data is collected for study, is there a component that compares pre-venogram symptoms to post-venogram results? Maybe this would eventually give doctors a tool that might indicate where problems lie based upon a patient's symptoms.

Arlene Hubbard posted some very positive results, but she said they are not collecting this kind of information. Patients are self-reporting, but their comments are scattered over many sites and are inconsistent in both timing and terminology.

This would also be helpful for patients to have some idea of how effective treatment would be on their individual symptom(s). For example, some people have many symptoms and might have a better way to help set their level of expectation.

Or for folks like me -- with only an issue with walking but facing a second procedure -- it would be nice to know if the odds are stacked in my favor.

Gratefully, Rosegirl

[Cece]

If "which side first" is one of the questions, there are at least a hundred questions of that degree of specificity. What a job our IRs have before them.

Dr. Sclafani, you must know I have been reading here for eight months and have envied everyone else presenting their MRV images, even when the images were dismissed as "crappy"! If you were inclined to share your thoughts on mine, it is here:
http://www.thisisms.com/ftopicp-146167.html#146167

You have HIPAA permission to comment on this or any aspect of my case now or in the future.

Patient is a 35-year-old female presenting with severe fatigue, a history of foot drop (now recovered) and numbness (now recovered), slight cognitive dysfunction, general daily malaise, "heavy arms," EDSS 0 - 0.5.

[mo_en]

Dear Dr.
Since MS is a progressive disease, it sounds plausible that CCSVI should be also. Under this perspective the abnormalities in the case you have described could be related somehow to each other. My belief is that the hypoplasia on the RIJV might have pushed the Left one to its upper limit (in terms of blood flow) instantiated by the very diameter of the valvular ring, which would be wide enough, if it weren't for the hypoplasia on the other side.
So, the breaking of the annulus raised the capacity of the LIJV and might compensate for the flow reduction on the right. However, is it true that it also destroyed the valves altogether? Doesn't this mean than a venous back-jet as proposed by F.Scheling is now more of a case?