This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear doctor.

I could write pages about our appreciation for talking openly with us. I understand the preciousness of your time, so I will make it very quick:

After having balloon angioplasty, could we take any measures to prevent or postpone restenosis? For example, quit smoking if we smoke, take vitamins and antioxidants, reduce stress, follow a healthy diet, etc. Do you think that this could help the venous wall be more healthy?

Thank you very much, doctor!

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Hi Sou,

Well I am certainly not The Good Doctor, but I cannot imagine anyone with MS smoking, before or after treatment. I believe smoking is a vaso-constrictor, (not sure if that's the right term, forgive me) but smoking also depletes oxygen in the brain, along with all the other hazards. I am no puritan, it took me time to quit myself.

I don't know about restenosis, and I have not been Liberated yet, but I do yoga on a regular basis, and now focus more intently on neck stretches, which I believe over the long haul will keep the veins, that entire area, flexible, like the effects of yoga on the spine; for as we age, we stiffen and contract, and any form of deep stretching, including stretching the breath, which is called pranayama, is also good for the brain and blood flow, oxygen to the brain etc. We also carry an immense amount of tension in our neck and shoulders, and notice it most when we start to do exercises to release the tension in those areas.

I am my own experiment, as we all are to some extent, and I know my jugulars are blocked, but while I wait for treatment, and medicinal discoveries, which I believe in too, I am focusing on opening those blockages by visualizing blood flow, (like Niagara Falls, frankly) while I stretch my neck.

Ralph Waldo Emerson: The invariable mark of wisdom is to see the miraculous in the common.

Namaste,
Zina

Zinamaria,

I am too a great believer in keeping my body fit and it has become a necessity due to MS. But one thing that has often bugged me is that to be able to do exercise or yoga one needs a certain amount of basic health. It becomes easy to get the benefit.
Let me explain what I am trying to say. Most of yoga require the mind to be calm and stay focused (e.g. imagining the niagara fall you mentioned). But MSers brain is so messed up, it is hardly able to focus.

I am not trying to oppose anything but some kind of dilemma I have often faced myself ...

Dr Sclafani,
Andrew Fletcher has a thread here at TIMS re: Inclined Bed Therapy--bed raised 6 inches at head, even incline down to none at foot of bed.
Many of us are doing this, and report great results in resolving to different degrees issues of circulation (myself included).

How do you see his theory in relationship to CCSVI?

Thanks...

Two videos have been uploaded and can be found on http://www.inclinedbedtherapy.com with an explanation.

The first is about the apparatus used to show stenosis in soft wall silicon tube filled with water

The second video is the experiment in hd quality that demonstrates how dissolved substances in fluid alter the tension and pressure of a tube causing one side to collapse and the other side to remain the same diameter / or even an enlarged diameter.

The experiment was first demonstrated in 1995, where the necking of silicon tube was observed. This video shows very clearly how a little salt added to the downward flowing side, representing arterial flow, introduces a tension to the return flowing side representing the venous return.

We can see clearly the return flow tube has collapsed.

Gravity must act on density resulting from evaporative loss!

Andrew

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IBT website: http://inclinedbedtherapy.com

Dr. Scalfani,

I don't have any question about my own case but pertaining to ccsvi itself.

Do you think the vein narrowing could be due to some gene mutation. This mutation in turn could be due to EB viral infection. The corelation between EB virus and MS has been reported many times. We know that this virus is very common but not everyone develops MS. We also know that genetic disposition matter a lot in case of noticeable gene mutations.
Do you think some research will be carried in this area?

The other question was regarding how the mutations are studied?
Will it not involve study of cells from suspected area (e.g. to study lung cancer mutations, it would make sense to study the cells from the lung). I ask this question because genetic mutation or gene link to MS has been studied for at least last 5 years. I CCSVI is indeed true, these genetic studies concentrated in the wrong part of the body.

I just want to know your thoughts on this. I know it is still early days for CCSVI.

sbr487 wrote:

"I am too a great believer in keeping my body fit and it has become a necessity due to MS. But one thing that has often bugged me is that to be able to do exercise or yoga one needs a certain amount of basic health. It becomes easy to get the benefit.
Let me explain what I am trying to say. Most of yoga require the mind to be calm and stay focused (e.g. imagining the niagara fall you mentioned). But MSers brain is so messed up, it is hardly able to focus."


Yes, I understand your concern sbr487, about basic health, and, not everyone with MS can move like we see in the typical images, unfortunately presented as 'yoga', and certainly I understand brain fog, lack of memory etc. and, most recently, legs that could not walk without aid, or stand without the use of a chair or another arm, a mouth that talked with slurred speech, and eyes that could not see straight.
But I am not talking about 'fitness', or 'exercise', that's for the runners, the bikers, the aerobic classes, one can go to a gym for all that, and yes, these activities would, naturally, take a certain amount of basic health, I couldn't agree more with you.
And certainly many people do use yoga as a form of exercise and fitness, myself included, when I can.

However, it is my understanding of yoga (and at its core, meditation), that whether one is in a wheelchair, or confined to a bed, or, able to stand, or maybe sit on the floor, or maybe even only stay in a chair, what is at the core of yoga is being present to the moment, in what is happening in the moment, present to the body, and the mind, with its confusions, fogs, its pains, to a body that is bound by its limitations, so that this practice of staying 'present' to the moment is what strengthens, or bring calmness, and eventually focus.
I believe this is yoga, and these things, focus, tranquility of mind, are a consequence, not a requirement of or for yoga; one needs only to 'show up' so to speak, bring ones awareness to ones present moment and this is the essence of yoga as I understand and practice it.
And if one can stretch their neck at the same time, or lift their arms above their head, or wiggle a big toe, what matters is the presence to what is happening when that happens.

I hope his helps explain and is helpful in some way.

Namaste,
Zina

I am curious about this as well...I guess my question would be: What causes restenosis? And are any of the possible causes of restenosis preventable?

I can understand if a vein fails to stay open immediately after being ballooned, but why would a vein stay open for a time (days, weeks, months?) and then collapse?

_________________
"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

beautiful explanation of staying in the (oh so elusive) Now Zina!

a short hiatus from your accolades was essential to hold my ego in check. I needed a breather too.

I can imagine how frustrating it must be to find someone to treat the ccsvi but h ave to wait 6-8 weeks longer. I certainly cannot diminish your fears that an exacerbation might precede your treatment.

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

There are many causes of restenosis, including elastic recoil, intimal hyperplasia, neointima, thrombus,

Elastic recoil is likely happening in patients with ccsvi . Also the hypertrophied valves may get pushed against the wall, but then slowly or quickly retain their original shape and cause obstructions.

neointima, thrombus formation are more common after stenting. in this situation, there is a reaction to the metal, to the shear forces, to the abrupt change in velocity of the veseel. The endothelial cells begin to proliferate and then other cellular and chemical substances in the circulation accumulate in and around the stent. This thickened area results in a decrease in the diameter of the blood vessels

So how do we deal with restenosis.

There are drugs that can reduce the inttimal hyperplasia. Some (serolimus) are placed on the surface of the stent to reduce ithat response. Other techniques include freezing the endothelial cells, platelet inhibition can be accomplished by anticoagulation, antiplatelet agents such as aspirin and plavix, reangioplasty is done sometimes, covered stents reduce the risk as well.

in CCSVI we are dealing with abnormal tissue development so restenosis can occur because of elastic recoil of that tissue. also restenosis can result when the valve that is pushed against the wall of the vein, begins to return to its original shape and orientation. [/quote]

Dear Doctor Sclafani.

You recently told me that my cervical lesions (not to mention everything else) could be due to problems with my jugular veins.
I feel i got to let you know that only yesterday and by a simple echo doppler exam both my jugs were found totally stenosed. According to my non ccsvi specialist radiologist i am a typical and most probably serious ccsvi case if this makes sense!

While it will take a venogram to get the whole picture (he strongly suggested to check the azygous too) he told me that there is simply no case for him to be wrong. I guess it was that obvious. Anyway , time will tell.

All in all, thank you. For everything. Keep this going because i can tell you from the bottom of my heart that these veins can kill.

Thank you for your continuous help.



But then if stents are placed in jugular(s); too much blood (?) is drained out of the brain during daytime (standing/seated), stents preventing their collapse (not sure I express myself correctly here, pardon me)




How about a cervical brace? Daytime or nightime depending which vein(s) is (are) stenosed

you express yourself quite clearly to me, thank you very much.
i would not worry about blood draining too fast from the brain. the limiting factor of draining the brain is what goes in. the capillary between the artery and the vein is the limiting factor in getting the blood out.
Also the stent is placed where the n arrowing of the veins is. the remainder of the vein, i would presume, will still collapse when you stand up.

hope this helps

do not forget that some doctors who perform stenting and/or angioplasty will put patients on anticoagulation. Vitamin K counteracts the coumadin. so make sure you discuss this with your physician when he puts you on coumadin to see whether you should stop vitamin k or reduce your intake of foods with vitamin k