This Is MS Multiple Sclerosis Community: Knowledge & Support

I agree this IS very interesting stuff.

I have to believe (as I think Dr. Sclafani referred at one point) that one of the first patients he saw had vertebral veins he couldn't fix ... maybe CTOS in addition to CCSVI is the key.

I think CCSVI - ALONE - is a starting point. Maybe it's one, maybe it's the other, maybe it's both.

BUT why everyone has this negativity toward CCSVI lately is SOOOOOOOOOO BEYOND ME.

CCSVI is the first explanation of a potential root cause for MS in a long time (CTOS now may be another).

This is an exciting time folks ... that's for sure.

I HONESTLY expect the outlook and definition of MS to change dramatically in the next 5 to 10 years - IN SPITE OF neurologists like Dr. Mark Freedman ...

The future is coming ...

Maybe the reason for the negativity is because some of us became overexcited and did expect it to be a ;cure' when in reality were still learning what it can and can't do.
It really is disheartening to read the posts of people who don't do as well as they would want to and we would want them too. It is all too easy to imagine that happening to our loved one.
I don't know about others but for me being slightly cautious in my expectations is really just a way to protect myself from disappointment.

I 100% agree with you Daisy.

To THINK you have had 30 years of MS and it will be fixed overnight by CCSVI liberation is INSANE if you ask me.

To THINK it might be fixed in 30 years after CCSVI liberation is a little more realistic.

I think people need to temper their expectations.

Everyone (almost) has had SOME gain from it ... some have had significant gains ... but it's still a learning process.

HOWEVER, it is something that has offered more hope and potential to understand what causes MS in the past 6 months than had been done in the previous 70+ years of EAE theory.

You have to remember, that back when MS was though to be a venous disease (in the 30's and prior) doctors didn't have the technology to get into the veins and fix things like CCSVI (or else MS probably wouldn't exist as it does today). Then EAE came along and everyone thought MS could be cured by drugs that work in mice but humans aren't mice and the EAE is NOT MS.

So now we have to go back and re-examine MS as a venous disease (CCSVI) and basically start the learning all over - except this time doctors have the technology to fix it.

PLEASE REMEMBER - this is the early days of discovery (like Dr. Sclafani says). They know of the jugulars and azygous for now ... CTOS/CTONS (or whatever the 2nd acronym was) may very well be additional information needed.

Mark my words though ... MS will not be the same from 2009 on ... wait until 2020 and beyond ... I guarantee the learning in medical schools about MS is completely different than it is today.

MS husband,

Let's hope so!

You must have seen posts that compare CCSVI to bee sting etc. You might have also noticed such mails don't mention anything about irrational behavior of neuros, MS societies etc (I can go on ...)

The truth is that CCSVI explains logically the issues causing MS, while the other cures that were proposed mostly based on intuition and observation.
The belief in CCSVI hasn't come just like that.

The question is what we can do to take this to a logical conclusion and forget extraneous things

I think we can do a lot by making monetory contribution, bringing awareness, building opinion etc. Its better to spend our effort in this direction. This is going to yield best ROI ...

Yes, he's seen vertebral veins that have issues, but the problem was that they're too small for the balloon catheter to be used there. I assume what he saw were the usual CCSVI-style malformations in those veins?

I am curious about CTOS too. My son for example had torticullis at birth, so one side of his neck had weaker muscles and the other side was strong. (Physical therapy helped, but every time he grows it needs more work and stretching again.) I wonder if there is any research in the torticullis world about the effect of these muscles on, say, blood vessels.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I think Dr. Zamboni incorporated some of Dr. Noda CTOS finding into CCSVI.
We all have seen picture of a bone impinging on a Internal Jugular Vein, usually called a pinched vein. In reality we know the bone alone cannot do it.
The vein would just shift a bit on the side and be fine. To have a narrowing you need another structure, like a muscle on the other side squeezing the vein against the bone. As you can imagine, balloon angioplasty alone cannot fix that problem because, sooner or later the external pressure will squeeze the vein against the bone again. Stents might work better but the final answer would be to eliminate the external pressure by operating on the muscle, as proposed by Dr. Noda. A similar situation is probably the long narrowing we see in the middle of the jugular vein. That is why we have a high rate of restenosis. Hopefully this soon will be worked out so that the success rate of the procedure will increase.

Interesting to see how CCSVI and CTOS overlap each other and share so many things in common.

The scans I had done in Poland confirm that my Jugulars are being squashed by the sternocleidomastoid muscles in my neck, which is the sort of thing that is characterised in classic CTOS.

I now need to find a way of getting my problems fixed. Ballooning doesn’t work (they can’t even push the catheter tube through the area being squashed) and even if they could, a stent would probably be a bad idea too. I wonder what the long term affects would be to a vein with a stent inside that is constantly being squeezed externally by muscle in a highly mobile area of the neck - probably not so good.

It seems to me that in CCSVI there is much focus on the problems that happen ‘inside’ the vein (valves, membranes, stenosis etc) but not much focus on flow problems caused by factors ‘outside’ of the vein.

I wonder how many other people have flow problems caused by things happening outside of the veins and arteries? (muscles, ribs, tumours, bones etc)

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

Mutley,

Are you thinking about having a procedure done for CTOS?
It sounds very invasive. However, there comes a point when people run out of options..

Hi Daisy,

It’s definitely something on my radar and I’m trying to find out a bit more. I’m certainly a tad concerned about the invasive nature of the procedure, but it’s difficult to imagine many other long term alternatives, and like you say the list of options isn’t exactly long. I so wish I could pause my life for 10 years and then see what’s available

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

That we have the option of CCSVI and a glimmer of another opportunity in the form of CTOS is a minor miracle in itself.
Let's hope they work for us...

It is "surgery" but it is not that invasive; this is the description of the procedure:

Under general endotracheal anesthesia and sterile conditions, place the patient in supine position with a serum bottle under the chest. Bilateral neck incisions, 4 cm above the clavicle. The incision is 4 cm in length and is made transversely in the area where you can feel the scalene muscles.

26. The sternocleidomastoid muscle are sectioned bilaterally with electro-coagulation of the cervical level C6-C7
27. The pre-scalene fat is dissected
28. When the jugular vein in front of the anterior scalene muscle is separated
29. The phrenic nerves were then dissected
30. The anterior scalene muscles are snipped at C6-C7, and also the insertion of the cervical
31. The interspinous ligament is cut at the same level
32. When stage III cervical ribs, the accessions are fought and cut the distal end of the cervical rib
33. When a "subclavian steal syndrome", is performed bilateral section of the pectoral muscles under
34. A thin drain "Penrose" is set and left for about two days
35. The surgical wounds were sutured with 5-0 Dacron
The entire article is below.
http://health.groups.yahoo.com/group/he ... essage/870

Thanks Nunzio,

I wonder if they do the same procedure irrespective of where someone’s problems are? It seems that focus is usually concerned with carotid arteries etc, so I wonder how different it may be if they are treating a squashed jugular vein instead of an artery.

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

Has this been posted?

Symptoms of CTNVS (pg 56)-headaches (migraine), neck and thorax pain, chest pain and arm numbness, shortness of breath, sleep apnea, diurnal apnea, memory deficit, absences, disorientation, dysphagia, dizziness, tinnitus, urinary incontinence, speech difficulty, loss of consciousness, ipsilateral palsy, severe stress, temporomaxillar joint pain, amaurosis fugax, tachycardia, dysmenorrhea, profuse menstrual bleeding, severe constipation, paresia, snoring, facial paralysis, pseudocarpal tunnel syndrome, coldness of the hands and feet, profuse perspiration, thenar, hypothenar atrophy, Raynaud disease and others.

(from Fernandez Noda EI, Rivera Luna H, Perez Fernandez J, Castillo J, Perez Izquierdo M, Estrada C; New concept regarding chest pain due to hypoxia of the internal mammary arteries in more than 1,600 operated patients with cerebral thoracic neurovascular syndrome (CTNVS). Panminerva Med 2002;44:47-59 )

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I do not think it makes much of a difference; the vein and artery run parallel to each other and when they are squeezed together by the muscle the vein loose because of the lower internal pressure. It will make a difference if it is the vertebral or the jugular vein being affected but I am sure the vascular surgeon will be able to sort it out and he will punish the offending muscle accordingly.