This Is MS Multiple Sclerosis Knowledge & Support Community

AlmostClever wrote:HIya Doc. S!

I was tossing this about in another thread but I am really left in the dark on this one!

This is a picture from my venogram showing the blood flow in my iliac veins/IVC (for those playing along at home!).

Can you give me your impression of what is going on here? I have argued that without a 3-d MRV or CT scan it would be difficult to interpret exactly. My doctor argues that without pain and swelling, he can't order the scan!

My symptoms are numbness in both legs and the right is much weaker than the left.

Have you ever seen and/or treated something like this?

What can be done? Do you think this might need to be treated?

Thanks in advance!

Since we are playing at home I will give you my assessment:
Your left iliac vein is dilated respect to the right. This is a classical sign of May-Thurner syndrome. Your body has compensated using the iliac-lumbar vein as a collateral bypass. This vein eventually drain into the Azygous vein causing overload and impairing its ability to drain blood from your spinal cord.
In addition it seems blood from the left Iliac vein is draining into the right Iliac vein. This would imply a blockage in the IVC, but I do not know where the tip of the catheter is.
I am including a link to Dr. Galeotti CCSVI procedure.
He is the only IR in the world with several years of experience on this procedure.
He checks the left iliac vein and he fixes any problem found on venography irrespective of patient leg conditions.
I would advice any IR doctor starting on this procedure to follow his protocol until they have enough experience.
The following link is in Italian but, at least, you can look at the pictures.
http://www.ospfe.it/attach/smcferrara/d ... tti%20.pdf

where oh where is Dr.Sclafani today?

In case anyone missed this:

GiCi wrote:You all will be pleased to know that Dr Sclafani and myself have been invited to take part in a debate on CCSVI, which will be held in Belfast as a satellite symposium in a conference of Vascular Surgery on the 24th of September. We will argue in favour of the liberation procedure, while two well known neurologists will argue against it. The debate will not change the world, but I hope that it may open some eyes.

So who'd'ya think won, our guys or the neurologists?

Cece wrote:where oh where is Dr.Sclafani today?

In case anyone missed this:

GiCi wrote:You all will be pleased to know that Dr Sclafani and myself have been invited to take part in a debate on CCSVI, which will be held in Belfast as a satellite symposium in a conference of Vascular Surgery on the 24th of September. We will argue in favour of the liberation procedure, while two well known neurologists will argue against it. The debate will not change the world, but I hope that it may open some eyes.

So who'd'ya think won, our guys or the neurologists?

I'll put my money on our guys. I don't know GiCi but Dr. Sclafani knows his stuff and is an impressive speaker. Wouldn't it have been great to be there? I wonder if it was recorded.

And what about debate(s) here in the US, Dr. Sclafani? I love it......accurate information about CCSVI coming out with every neurological spin refuted immediately.

Dear Dr. Sclafani,

If we assume that the CCSVI theory is right then how can the following have an impact on bloodflow/MS lesions forming issues:

a) Posture and position: is it better/worse to be in the supine or lying down position? Can having a bad posture have an impact?

b) Physical exercise: does physical effort impact on impaired blood flow when we have CCSVI?

c) Diet: are some nutrients worse/better for CCSVI?

d) Climate: does cold/heat affect the impact of CCSVI?

Many thanks for your attention.

Spiff

I think "GiCi" is Dr Gianfranco Campalari, who is a specialist Cardiologist.
He originated from Ferrara in Italy. the same town as Prof Zamboni. He met Dr Zamboni at a dinner party, and subsequently had the liberation treatment, which was successful. He re-stenosed, and another doctor treated him a 2nd time with angioplasty.
He appeared in SuperDocs on television, and now works in Belfast
His story is on the net, and is easy enough to find.
He states in his story that he believes that it is unethical for the neurologists to dismiss CCSVI.
As he is a specialist doctor, has had angioplasty for CCSVI twice and is "known" due to his public profile, he would be an ideal ambassador for the CCSVI cause.

Ned wrote:I think "GiCi" is Dr Gianfranco Campalari, who is a specialist Cardiologist.
He originated from Ferrara in Italy. the same town as Prof Zamboni. He met Dr Zamboni at a dinner party, and subsequently had the liberation treatment, which was successful. He re-stenosed, and another doctor treated him a 2nd time with angioplasty.
He appeared in SuperDocs on television, and now works in Belfast
His story is on the net, and is easy enough to find.
He states in his story that he believes that it is unethical for the neurologists to dismiss CCSVI.
As he is a specialist doctor, has had angioplasty for CCSVI twice and is "known" due to his public profile, he would be an ideal ambassador for the CCSVI cause.

Thanks for the info, Ned. Our team certainly was a strong one. I can't wait to hear about it.

And a note to Dr. Sclafani - the NY symposium...then China and Ireland...thank you Dr. S, for taking the CCSVI show on the road. I know you are disappointed in not being able to perform the liberation procedure but you are certainly not wasting your time while you're waiting. In fact, you are probably helping ALL of us even more with the work you are doing now...assembling and meeting with the top docs in CCSVI, getting the information out to the public, educating other doctors, learning from colleagues who have performed the liberation procedure and I know that's not a complete list.

Thank you and I hope you're back in the saddle again soon.
Laura

spiff1970 wrote:how can the following have an impact on bloodflow/MS lesions forming issues:

a) Posture and position: is it better/worse to be in the supine or lying down position? Can having a bad posture have an impact?

b) Physical exercise: does physical effort impact on impaired blood flow when we have CCSVI?

c) Diet: are some nutrients worse/better for CCSVI?

d) Climate: does cold/heat affect the impact of CCSVI?

Doctor, I would love to hear your answers to Spiff's questions, and I am particularly interested in learning whether sleeping at an incline could help.

Thank you!!

Lainie wrote:Doctor, I would love to hear your answers to Spiff's questions, and I am particularly interested in learning whether sleeping at an incline could help.

Here is what he said back in the early days of this thread:

drsclafani on Mar 24th wrote:I am certainly no expert on MS. I have heard from several patients that elevating the head of the bed makes them feel improvement. I might do that.

Why should elevating the head of the bed result in improvement? I doubt it has anything to do with getting a good nights sleep, or dreaming better. From the CCSVI theory, I can imagine benefits of an elevated bed.

We should all remember that the drainage of the blood out of the brain has two normal pathways. When lying down, blood drains out of the brain through the jugular veins. When standing up,the jugular veins collapse and blood returns to the heart through the vertebral veins.

These facts astound me. I have asked a few dozen physicians, including sleep experts, vascular surgeons, cardiologists, neuroradiologists and interventional radiologists to tell me how blood drains from the brain and NO ONE got it right...making this physiology a most common hidden secret.

So how do i explain the benefit of an upright bed. If you lie down and the increased flow through the jugular veins is counteracted by the jugular obstructions, then it would seem best to enhance blood flow through the vertebral veins. So put yourself closer to upright.

Just a theory

I posted that GiCi is Dr Gianfranco Campalari -

He is, in fact Dr Gianfranco Campalani - (with an N, not an R)

Apologies!!

Thanks again Cece for finding the quote from Dr. S; "These facts astound me. I have asked a few dozen physicians, including sleep experts, vascular surgeons, cardiologists, neuroradiologists and interventional radiologists to tell me how blood drains from the brain and NO ONE got it right...making this physiology a most common hidden secret."
I think that until the blood flow into and out of the brain is measurable there will be uncertainty with the CCSVI Theory.
To measure and compare actual blood volume and flow rates between PwMS and other diseases against 'normal' flows will be required before the whole blood circulation requirement and dysfunction issue can be understood.

These measurements will be the only way we can begin to understand the importance of blood movement within the brain.

Although a huge task given the many ins and outs of the system, but the only way to achieve an insight to what is and isn't happening.

A quote from a man who has studied blood flows and passages in the accessory blood system, (that is the flow from the brain that does NOT include the juggulars (33% of the time) and is the system we use when UPRIGHT, 66% of the time!)
"According to physical anthropologists, upright posture increases blood flow to the brain, and the accessory drainage system evolved to handle the subsequent increase in veinous outflow. Since humans spend roughly two-thirds of each day in the upright position, the accessory drainage system is critical to healthy brain blood flow. A constricted and clogged accessory drainage system could lead to venous congestion and chronic drainage and waste problems. It could also lead to chronic normal pressure hydrocephalus (NPH).
The big question is can inherited and acquired disorders and degenerative conditions of the cervical spine, especially the upper cervical spine and base of the skull, affect the drainage system of the brain enough to cause chronic NPH, CCSVI and subsequent neurodegenerative diseases such as Multiple Sclerosis, Alsheimer's disease and Parkinson's disease?"
Micheal Flanagan.
Regards all, Nigel

SandyK wrote:Hi Dr. I am most concerned with the size of the balloon and how much time it is left in the vein. Is bigger better Maybe in this case it is. Thank you.

good to be home..

The balloon is 2-4 centimeters long on the end of a thin catheter. The balloon is tapered to the shaft of the catheter. When it is inflated it can be any where from 2mm to 20 mm in diameter. Most interventionalists are using 1-14 mm balloons. The balloon is inflated for some variable time, some just inflate it until the blood vessel stretches it open. others leave it inflated for 30-120 seconds. The inflations are done one to six times.

there is no best practice in regard to balloon size, balloon diameter, or pressures or time of inflation or number of times of inflation.

I think bigger is better until it is too big, then you get tears of the vein. We do not know what diameter too big is.

Cece wrote:

drsclafani wrote:so what exactly are you guys interested in us studying as it relates to the treatment of ccsvi

I remember this line of thinking:

drsclafani wrote:To date I have seen the following: In most patients they are mixed

1. Anomalous confluens of jugular vein
2. Absent Jugular vein
3. annular stenoses
4. hypoplasia, isolated
5. hypoplasia, multiple tandem
6. duplications with stenosis
7. reversed valve
8. incomplete or fused valve leaflets
9. misplaced valve
10. false channels (may be incomplete jugular duplication)
11. webs
12. indentations/impressions
13. abnormal drainage of external and vertebral veins

So variation is the rule.

Not to be simplistic, but identifying every variation of CCSVI and standardizing the names still needs to be done?

the human mind has a need to collect, categorize and simplify.
yes, i think we need to define all the types of venous anatomic distorsions so we can seen which ones respond and which ones behave badly. Not sure wee can but we do have to categorize to find out.

Cece wrote:

drsclafani back on April 25th wrote:We need to get some clarity, some experiences in centers of excellence, and some training and testing, perhaps even some certifying.

Imagine that: ONLY GO TO CENTERS THAT ARE CERTIFIED.......
Hell, we cannot even get up and going yet

This is from awhile back. I don't know much about certifying, how does it get determined? Who sets them?This would help us someday with the 'caveat emptor', wouldn't it? When will certifying be likely in CCSVI?

cece
certification is already done for a variety of imaging tests. Guidelines will need to be written but that can only be evidence based.
this might be done by a society, or an organization.

I believe we will get there. but we have to have some evidence before we can

Right now, there are too many centers and practicioners who claim to be endorsed, trained or supported by dr zamboni. in many circumstances this is disingenuous.

NZer1 wrote:Hi all, I would like to echo Thekla's request.
The need to understand the 30% positive response to angio treatment is very important even at this stage of trying to get approval to treat more PwMSers.
It is vitally important to understand the effects of angio and to understand the differences for those who do not see benefit, 70% of people are having a poor response, WHY?
As important as it is to get more people treated, it is equally if not more important to understand the process that creates improvement.
As time progresses there is more belief that CCSVI treatment as it is known now is only part of the mechanism of symptom improvement. We need commitment to learning WHY, is it the treatment quality, are PwMSers being assessed soon after treatment to understand the reasons for varying outcomes? If not then that needs to change, the standard of care needs to apply to having these PwMSers researched for answers. It is not enough to treat and move to the next person, there needs to be a standard of care for those who have less benefit from angio.
Finding people (Specialties) who can work with IR's is as important as having approval, it will be too easy to be stopped again and again if the standard of care is not the primary focus.
It is almost as though there needs to be another level of service implemented at the same time as IR's are doing their part, so patients are handed on to another group complimenting the IR's primary work. A Team approach with research and quality care being the objectives.
Regards to all,
Nigel

nigel
where did you get the 70% nonresponder rate? I have not read that.

NZer1 wrote:Cece I see in the comment that there needs to be people looking at the future as well as people dealing with the present.
I think that like so many new 'things' there are people jumping at the opportunity, not only PwMSers but also Radiologists and IR's they need to be accountable. There is examples of life savings involved and where people will need multiple treatments to achieve a lasting outcome. There needs to be some give and take, from the service providers.
It is excellent that the pioneers are out there helping people and there are people who are not receiving equal outcomes, equal service, equal costs and the list goes on.
There will need to be some standardization of many things to establish some level of expectation and value and followup. Not guarantees as such but standard expectations from all involved, providers and recipients.
This may seem to be too early to look at these things, and they do need mindful attention.

nigel
i agree with you. But we do not know how many PPMS< and SPMS is being treated.