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Dr Sclafani:

How dangerous would you say your procedure for CCSVI is - could it be fatal? And if the patient where required to have angioplastic the second time - would this be more risky than the first time?

christian
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everything has risks. Those risks are sometimes unpredictable and include the worse case scenarios.

but risk is only part of the equation. You must also look at benefit and you must also put risk in perspective.

Lets say you have to go from brooklyn to manhattan and you need to take a bus. There is a risk of fatality. definitely. However there is also a benefit. you get to go where you need to go in order to enjoy the opera, a baseball game, a doctors appointment ????. You could walk, you could cancel or you could take the risk. we make those risk analyses all the time in our lives

if you take the risk, you take the risk because you believe based upon what you have been told that the risk of getting there on public transportation is less than the benefit you would derive. You might not go if you though there was a 50/50 chance of being beheaded but you might go if you had a 1 in a thousand chance of being mugged (less than reality) . you might take that risk for a hot date. but you would not likely take that risk to go to the dentist. tSo it all comes down to risk and benefit.

but i digress. if you had a chance of being less stiff, more sensate, and developed the ability to walk instead of chair, then you might take the risk.

so yes, i suppose there is the risk of dying, but it isnt a very sbstantial risk and the beneift options certainly make me recommend taking the risk.

So yes, there is always the risk of dying when someone with a chronic illness like MS comes into the hospital, has a liberation, takes copaxone, etc. The risk is exceedingly low but it is not without risk. With regard to taking the second procedure, that would depend on what procedure is the second procedure. if the vein clots off and you have to get thrombolysis, for three days and that might lead to massive hemorrhage, you certainly could think twice. if the risk is minimal requiring repeat dilatation of a vein that has already been treated, then you might go for it. We all have our risk tolerance. each has to decide

Quote:
I am wondering if there is some logic to the idea that maybe the iron deposits found in MS lesions are an endproduct of hypoxic injury which in turn is occurring because of reduced blood flow and it is actually hypoxic injury we have to worry about, not iron per se?


There is a thread here on TIMS about iron and phlebotomy, generating a fear of iron--Stacemeh's posit seems a reasonable answer.
Wonder if you could comment on this.

Thanks for your incredible interaction here.

The theory, and only a theory, about iron deposition in ccsvi is that the luxuriant vicarious redistribution of blood flow away from the obstructed veins through the brain and out collateral veins is such that the blood brain barrier is compromised and rthis results in leakage of red blood cells (iron richc blood vessels) into the brain. Theoritically these lead to iron deposits and hemosiderin depositis in his brain. . This iron ultimately breaks down and leads to iron deposits.

tonite at the 150th anniversary of downstate medical school i had a conversation with the chairman of pediatrics. I was trying to entice him to think about how we can test for ccsvi during childhood before the upstream effects become manifest. afterall, the ultimate treatment would be to genetically re-engineer the DNA to NOT form malformed veins.

The first thing to do i s to figure out a way to identify children and families of young ones. try to proactively find those people before their disease becomes manifest.

He was skeptical but curious about what is currently known, and he immediately was thinking about ways to address the question.

That is why I love academic medicine

Dr. Sclafani,

My 12 and 16 year old daughters want to know if they have ccsvi.

I am sure plenty of msers' children either understand enough to want to know and be treated so they don't develop ms, or their parents want them tested.

mb

drsclafani wrote:tonite at the 150th anniversary of downstate medical school i had a conversation with the chairman of pediatrics. I was trying to entice him to think about how we can test for ccsvi during childhood before the upstream effects become manifest. afterall, the ultimate treatment would be to genetically re-engineer the DNA to NOT form malformed veins.

The first thing to do i s to figure out a way to identify children and families of young ones. try to proactively find those people before their disease becomes manifest.

He was skeptical but curious about what is currently known, and he immediately was thinking about ways to address the question.

That is why I love academic medicine

This is something that really interests me. I have already had a scare with my daughter when she was in her teens. MS was ruled out. Now she is in college and under stress and experiencing numbness in her feet, getting clumsy and some other MS type symptoms. And I want her to be tested for MS and she's a little freaked, yet still able to deal with it all. But if she is indeed at early, early stages. I would love both my kids to be included in the type of study that checks out their veins...

Major interest in this!

My mom has type I diabetes, and previous studies have shown that the children of parents with type I diabetes are twice as likely to develop MS.

I wonder if type I diabetes (another supposed "autoimmune" disease) might also have its roots in some kind of vascular abnormality, which might be passed on genetically.

Incidentally, my mother has also been stricken with Parkinson's, coincidence or connection? It's a big freaking can of worms we are opening here, and one that probably should have been opened a long time ago...

Interesting. My father's family is full of type I diabetes. These are also the people who passed along varying degrees of a hypermobility syndrome, which involves collagen defects.

drsclafani wrote:... how we can test for ccsvi during childhood before the upstream effects become manifest. afterall, the ultimate treatment would be to genetically re-engineer the DNA to NOT form malformed veins.

The first thing to do i s to figure out a way to identify children and families of young ones. try to proactively find those people before their disease becomes manifest.

Seems like the first thing to do is make sure pregnant mom's get enough vitamin D. There are several studies that link vitamin D deficiency in mom to MS. The one I am thinking of in particular was published December 2009 in European Neurology, Timing of Birth and Risk of MS in the Scottish Population. This study found that MS patients had many more spring birthdays than healthy controls. In particular, male MS patients had 48.5% more April birthdays than expected. I have an April birthday!

Maternal vitamin D deficiency could be pivotal in proper venous development in the fetus. This would explain the latitudinal correlation of MS as well as the seasonal one. Mom's aren't getting enough sunshine = lack of vitamin D production.

Thanks Dr. Sclafani,

I know I am probably comparing apples to oranges (or maybe even rocks to oranges), but the thing that got me wondering about what’s up with the iron is that once upon a time my original professional training was as a veterinary technician; as such I worked in emergency practice for quite a few years.

Anyway, in practice it was not too unusual for animals to come in with bits of probably different metals (bebe pellets, duck shot and who knows what sort of shrapnel) in them that more often than not would be a total surprise to their owners when we coincidentally found this stuff on x-ray. People always wanted to of course remove it, but the doctors always explained that the body is able to sequester (form a scar around) this kind of thing and most likely no further harm would come of it, certainly far less harm than trying to surgically remove it. I know Dr. S will know what I’m talking about here but for those who wonder why I say this, it is important to remember with plain film x-ray the view is only one dimensional so it is possible to see the object is in the body but leaves no way to tell how deep into the tissue it has penetrated, (nor does it give a clear view of what nerves, vessels and other structures would have to be worked around to get at said object).

Okay this is getting to be a long winded question, but I think what I am getting at is; is it possible the same sort of metal sequestering is happening at a microscopic level in the cerebral venous vascular walls creating plaques/scars (which I think would render this stray iron harmless, other than the problems caused by the scars )?

Once again thank you so much for your time and interest.

Dr Sclafani, liked your risk-benefit analysis.

Leaving the stent discussion aside for now. As regards the traditional method of "angioplasty" isn't the risk-benefit analysis for that a win-win situation for all with MS - whether more severe or less severe progression? We have nothing to loose and potentially a lot to win! We do not know the long-term potential preventative effect either, but there could be a chance.

A regards immediate effect, what's your view on statements as those from Sinan in Kuwait? - see below (and Zamboni and testimonials from his patients in interviews have reported similar observations).

"Sinan says all of the patients saw improvements in their MS symptoms, with some noticing "dramatic" results...He says patients with more severe MS reported fewer improvements, but did notice feeling less stiffness and more energy. Those with less severe disease, reported up to 90 per cent improvements in their fatigue and numbness in their hands and leg. "In one case, the patient couldn't see from one eye and started to be able to see," Sinan reported.

Sinan said he's confident the results he saw were not the result of the "placebo effect,"..."If this is a placebo effect and I have MS, I would want this placebo effect," Sinan said."It is amazing the kind of improvements the patients say they have. It cannot all be attributed to placebo. Not being able to see and then being able to see, better bladder control, end of foot drop -- that cannot be placebo."

luxuriant vicarious redistribution

A Doctor, and a poet! A Man for all Seasons.

Bless your heart too, Doc. - for thinking of the kids. You make me wish I had pursued medicine. Is 48 too old? I have a half of a B. Arts. Grin.

luxuriant vicarious redistribution


A Doctor, and a poet! A Man for all Seasons.

He sounds like some of the doctors I 'scribe for, I've always thought they were just trying to make sure I was paying attention.

drsclafani wrote:The first thing to do i s to figure out a way to identify children and families of young ones. try to proactively find those people before their disease becomes manifest.

Thanks Dr Sclafani to think about our kids.
Admit that thoughts have already crossed my mind to get my kids a doppler test...but thought maybe I'm exaggerating at this moment of time. And my sister made a comment that she would be curious to get one just to see if there is a difference. To be frank I think a lot about my kids (and their kids in future), their cousins and the genetic issue, as both sides of our family is with no doubt "blessed" with MS and a range of other autoimmune disease genes...and not only my kids/family in the end, but all of the future generation that could benefit from further progress of CCSVI research.

Stacemeh wrote:is it possible the same sort of metal sequestering is happening at a microscopic level in the cerebral venous vascular walls creating plaques/scars (which I think would render this stray iron harmless, other than the problems caused by the scars )?

That is such an interesting proposition! I have no medical background but it sounds very convincing to me and if it isn't the case, well, excellent deduction all the same!

And thanks Dr Sclafani for all this valuable information, it's a great thing that you're doing here.