DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

ccsvi

Postby blossom » Wed Mar 09, 2011 8:29 pm

dr. sclafani, thank you for explaining what you have.

what i am understanding is that once you have the procedure even if only one time, say i restenosed 3 days after or 3 yrs. from now on i could probably get a clot. and the intimal hyperplazia possibility has no time limit either? i assume it is because of the foreign cathater disrupting the lining of the vein that could cause this to happen? so once you have this procedure along with possible relief basically your veins could act up from the disruption at anytime in your life time from it?

at the point of entry i had no pressure applied and no brusing no trouble with bleeding. does nerve damage like i assume i have ever heal? this is like salt put in my already wounded body.

also, as far as getting a doppler at the groin entry area i didn't understand if you think that would help detect anything or not. are there any other type of testing that could detect problems other than having the angioplasty-which i'm taking as that when fixing one problem could set off the same chain of events again?

has there ever been anything decided on like how many times this could be done before the wear on the veins it would no longer be considered safe?

thank you again for your patience and time. as you can guess i'm not one to use or understand a lot of the big words used in medicine. but, i need to understand this the best i can.
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ccsvi

Postby blossom » Wed Mar 09, 2011 8:34 pm

CONGRATULATIONS!!
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Re: ccsvi

Postby drsclafani » Wed Mar 09, 2011 9:13 pm

blossom wrote:dr. sclafani, thank you for explaining what you have.

what i am understanding is that once you have the procedure even if only one time, say i restenosed 3 days after or 3 yrs. from now on i could probably get a clot. and the intimal hyperplazia possibility has no time limit either? i assume it is because of the foreign cathater disrupting the lining of the vein that could cause this to happen? so once you have this procedure along with possible relief basically your veins could act up from the disruption at anytime in your life time from it?

at the point of entry i had no pressure applied and no brusing no trouble with bleeding. does nerve damage like i assume i have ever heal? this is like salt put in my already wounded body.

also, as far as getting a doppler at the groin entry area i didn't understand if you think that would help detect anything or not. are there any other type of testing that could detect problems other than having the angioplasty-which i'm taking as that when fixing one problem could set off the same chain of events again?

has there ever been anything decided on like how many times this could be done before the wear on the veins it would no longer be considered safe?

thank you again for your patience and time. as you can guess i'm not one to use or understand a lot of the big words used in medicine. but, i need to understand this the best i can.


ok
lets skip the big words and complicated discussions

any time you have a narrowing of a vessel, you have a risk of slow flow and turbulence and that can lead to thrombosis.
every time you injure the inner lining, you run the risk of thrombosis
everytime you sit in a plane without pumping the legs by walking or by squeezing your leg muscles you run the risk of clotting off your vein
Everytime you dehydrate you run the risk of clotting

the vein heals and the risk is reduced.
you take aspirin and you reduce the risk


it is thought that stenoses beget stenoses. i am not so sure any longer

surveillance ultrasounds that show stenosis developing, are a reasonable, safe, cost effective method of screening for clot
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ccsvi

Postby blossom » Wed Mar 09, 2011 10:44 pm

dr. sclafani, thanks for taking me by the hand.
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Re: ccsvi

Postby Cece » Thu Mar 10, 2011 8:58 pm

drsclafani wrote:it is thought that stenoses beget stenoses. i am not so sure any longer

I am not entirely sure what you mean by this, but if restenosis makes clotting more likely, wouldn't just having the stenosis in the first place make clotting likely? If I had my 100% LIJV stenosis since birth, for example, so 35 years of stagnancy or turbulence on that side, shouldn't a clot have formed during those 35 years if those conditions make clot formation likely?

drsclafani wrote:AS you say restenosis could occur at any time but clotting tends to occur early unless stenosis recurs after which clotting could occur at any time. i have a theory about this that i cannot share yeet without appearing to shoot my mouth off so i will lay low for the time being

There is no judgment here, shooting off at the mouth is ok, being wrong is ok, sharing theories is very ok....and I suppose laying low is ok too. Sigh.
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Re: ccsvi

Postby pklittle » Thu Mar 10, 2011 9:54 pm

drsclafani wrote:AS you say restenosis could occur at any time but clotting tends to occur early unless stenosis recurs after which clotting could occur at any time. i have a theory about this that i cannot share yeet without appearing to shoot my mouth off so i will lay low for the time being


The great doctor is wise. :wink:

I do look forward to hearing the clotting theory though but if I have learned anything at all about this CCSVI, it is to be patient... as difficult as it is.
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Postby HappyPoet » Fri Mar 11, 2011 7:59 am

Hi Dr. Sclafani,

drsclafani wrote:I HAVE LEARNED THAT THE VEIN IS NOT STRICTURED.

What does "strictured" mean? Thx!
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Re: ccsvi

Postby Cece » Fri Mar 11, 2011 9:18 am

pklittle wrote:The great doctor is wise. :wink:

I do look forward to hearing the clotting theory though but if I have learned anything at all about this CCSVI, it is to be patient... as difficult as it is.

I am still learning that one. It is a matter of chiseling an "im" away from impatient. Impatient to I'm patient....

Perhaps there will be enough information shared after ISNVD to curb my impatience that way. :)

Do you see, the viewcount is already up to 501,280 after just hitting 500,000! Up and up and up.

Sorry, no questions. I am still thinking about this idea of a funnel.
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Optic neuritis - no Dx of MS yet - how to proceed

Postby didi4300 » Fri Mar 11, 2011 11:50 am

My son was in for a routine eye exam for new contacts and they discovered inflammation of his optic nerve. Now they want to proceed with further tests next week, of course telling him it could be possible MS or brain tumor. He is 28 years old, works two jobs, but has no medical insurance. I was diagnosed with MS 11 years ago, had CCSVI procedure in October 2010 with pretty good results. I am reluctant to have him continue with further testing and possibly labeling of a MS condition at this point. I would almost prefer for him to go ahead with a venogram or a wait and see course of action before putting it in the hands of a neurologist . Any advise or suggestions would be greatly appreciated.
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Please help - very bad after treatment in Poland

Postby jooles105 » Fri Mar 11, 2011 1:14 pm

Hi,

I went to Katowice in July. I was on the mend for 13 days and then all was worse than ever. I have steadily declined with all NEW symptons. One of my worst is that I am shaking uncontrollably down my right side. I'm in Canada so doctors don't care a wick about me. Have you heard of others having this sympton or similar?

Thank you,

Julie
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HAPPY ONE-YEAR ANNIVERSARY!

Postby HappyPoet » Sat Mar 12, 2011 10:01 pm

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Postby Drury » Sat Mar 12, 2011 10:26 pm

Happy One Year Anniversary Dr. Sclafani!!!!!!
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Re: HAPPY ONE-YEAR ANNIVERSARY!

Postby Cece » Sun Mar 13, 2011 7:42 am

Here is a one-year gift. You have often quoted the first one, but there are many more which seem apropos to the teaching and friendship you have offered us:

~ People only see what they are prepared to see. ~

~ Make yourself necessary to somebody. ~

~ To know even one life has breathed easier because you have lived. This is to have succeeded. ~

~ It is one of the most beautiful compensations in life…that no man can try to help another without helping himself. ~

~ Unless you try to do something beyond what you have already mastered, you will never grow. ~

~ A chief event of life is the day in which we have encountered a mind that startled us. ~

~ The ornament of a house is the friends who frequent it. ~

~ You cannot do a kindness too soon, for you never know how soon it will be too late. ~

~ The one thing in the world, of value, is the active soul. ~

~ All life is an experiment. The more experiments you make the better. ~

~ The only gift is a portion of thyself. ~

~ The reward of a thing well done, is to have done it. ~

~ A hero is no braver than an ordinary man, but he is brave five minutes longer. ~

~ How casually and unobservedly we make all our most valued acquaintances. ~

~ A man's growth is seen in the successive choirs of his friends.~

~ Good thoughts are no better than good dreams, unless they be executed. ~

~ The years teach much which the days never know. ~

~ The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well. ~

~ Every man is entitled to be valued by his best moment. ~

~ The best effect of fine persons is felt after we have left their presence.~


(It might seem as if I've listed every Ralph Waldo Emerson quote out there, but no, there are many more here: http://hubpages.com/hub/RalphWaldoEmersonQuotes )

One year ago you saw that there was a need here at TIMS and you took it upon yourself to fill that need, to the benefit of all who come here. ;)
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Sorry if this has already been covered.

Postby Hope4all » Sun Mar 13, 2011 10:33 am

Hi Dr Sclafani i had my second procedure in early november of 2010 the clinic i was in placed a stent in my left IJV, a thombosis occurred which is now blocking that vein by 60% i am on warfarin anti coagulant since treatment and the thrombus is stable. my symptoms are now worse than before my first treatment.

My question is after all this time will it be possible to remove the thrombus via chemo mechanical thrombectamy or some other way or am i now stuck with a 60% reduction in that vein because it will now be solid scar tissue?

Also is it possible to balloon the vein again now the stent (14mm) has healed in? what are my options from here?

Im in the uk but have no issues travelling anywhere to get back the improvements i felt after my first procedure.
After 12 years i had a fantastic 'months holiday' from my MS and am worried that i'm now not going to be able to get back where i was.
Thankyou so much for the time you have commited to our cause.
Andy.
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Postby Cece » Sun Mar 13, 2011 12:11 pm

Didi4300, jooles105 and Hope4all, welcome to drsclafani's thread! He is away in Italy for a few days, although we might still see him in here.
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