DrSclafani answers some questions

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

Postby HappyPoet » Tue Mar 08, 2011 10:19 pm

Sharing... :)

Dr. S exclaimed during my procedure last week, "Fantastic!" Here is his explanation of his exclamation:

drsclafani wrote:I HAVE LEARNED THAT THE VEIN IS NOT STRICTURED. MALFORMATION OF THE VALVE LEADS TO A FUNNEL INSIDE THE VEIN THAT NARROWS. THEREFORE YOU DO NOT NEED TO INFLATE AS MUCH AS THOUGHT BUT CERTAINLY MORE THAN WE USED TO. ALSO I THINK THERE ARE TWO TYPES OF VALVE PROBLEMS.
VALVE MALFORMATION IN WHICH THE VALVE LEAFLETS ARE FUSED TO CREATE THE FUNNEL AND ANNULUS MALFORMATION WHERE THE ANNULUS OF THE VEIN IS SMALL, NARROW AND OBSTRUCTIVE. THIS IS NOT AS EASY TO TREAT, REQUIRES HIGHER PRESSURE AND PERHAPS IS ASSOCIATED WITH THROMBOSIS, NOT SURE.

Originally posted as part of my update on Dr. Sclafani's thread, Appointments at American Access Care.

~~~~~~~~

Edit: Also from my original post:

Going to Dr. Sclafani was definitely the right decision, the best decision, and one of the smartest decisions I ever made in my entire life.

:D
Last edited by HappyPoet on Wed Mar 09, 2011 7:28 am, edited 1 time in total.
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Postby blossom » Wed Mar 09, 2011 12:12 am

dr. sclafani, i know after my treatment when they checked with a doppler to make sure i had flow before leaving-they checked rather fast the jugulars. i was in a wheelchair sitting. of course when i got treated i was laying on my back. they did no doppler before treatment. when you check for flow afterwards or before does it make any difference what position the patient is in as far as accuracy?

i immediatly had a numb left leg which they gave no thoughts as to why. when i expressed my concern on this thread you said it could possibly be a clot and get checked. which when i got my pcp to order my doppler i got him to order it for the jugulars and the groin. they said all clear. my second follow up i thought he wrote it up the same way but when i got there it was for the jugulars only. they say i have flow. i plan on my third follow up to have the groin checked too. they think i'm nuts here at the docs even saying well you had 1 doppler things were ok. why more? then i go through it again that they agreed to look after me after treatment and that the follow up recomended was a doppler every 3 mo. for a yr. i'm sure i will go through all of it again when i request a doppler next month.

the risk as we know are the clotting and intimal hyperplasia. after treatment and for any reason someone could not swing more treatments--how long would that be a concern? months? a yr? yrs? i know the veins could restenose anytime but clotting and stuff is a different hard to deal with problem. do you or any of the treating doctors recomend getting the groin entry vein checked too? i was told when treated that the agyous could not be dopplered after treatment. what if it clotted? if clots go undected too long what happens then? do they shrivel up and die like a vine with no water?

i went into it knowing there were risks i honestly can say i didn't realize all of them. but even so, ms as they call it is not without risk even if i did nothing. in fact it's hell. but, i'm the type that that will take a risk for a possible gain but i do want a good understanding. weigh it out and no oops-i didn't know this or that. then-oops too late now.

please don't take this as i am anti ccsvi because i support it and the research. it has opened pandora's box and that is the best thing that has ever happened to us suffering from these symptoms they named ms. you and the other doctors first at the frontline to fight to get us this new real hope and treatment will forever be our heroes.


s could


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Postby blossom » Wed Mar 09, 2011 12:23 am

sorry about that long blank space. i don't know what these floppy fingers hit wrong. and i don't know how to fix it. my computer has been acting goofy too.
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Re: ccsvi

Postby drsclafani » Wed Mar 09, 2011 7:04 am

blossom wrote:dr. sclafani, i......when you check for flow afterwards or before does it make any difference what position the patient is in as far as accuracy?

The flow in the jugular should be better in the lying down position

i immediatly had a numb left leg which they gave no thoughts as to why. when i expressed my concern on this thread you said it could possibly be a clot and get checked. which when i got my pcp to order my doppler i got him to order it for the jugulars and the groin. they said all clear. my second follow up i thought he wrote it up the same way but when i got there it was for the jugulars only. they say i have flow.

the numbness in the leg could also be due to a nerve injury during the puncture. it is usually "bruising" and called neuropraxia... The vein and the nerve are separated by the artery so it should be pretty uncommon, but development sometimes puts things were they dont belong

.......

the risk as we know are the clotting and intimal hyperplasia. after treatment and for any reason someone could not swing more treatments--how long would that be a concern? months? a yr? yrs?


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
i was told when treated that the agyous could not be dopplered after treatment. what if it clotted? if clots go undected too long what happens then? do they shrivel up and die like a vine with no water?

clotted veins can either recanalize by having some flow get through or organize in which the clot turns into scar tissue. A recanalized vein can be reopened. a organized less likely
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Postby SaintLouis » Wed Mar 09, 2011 1:25 pm

Dr. Sclafani,

I read on your "Dr. Sclafani dialogues with other physicians" thread a comment you made about a patient who came to you that had been treated elsewhere and had a clot in their leg vein from someone pushing too hard or too long post-procedure to stop the bleeding.

I, being a worrier, did no even have this on my radar of things to worry about...but now I do! Would you say that situation is pretty rare and that the facility where it was done was not typical? Or should we always be aware of how long/hard someone presses on the vein post-op? Yikes.
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Severe nerve pain

Postby lovebug » Wed Mar 09, 2011 1:39 pm

Does Dr.Sclafani have any ideas as to what can be done about nerve pain? My entire arm and hands are numb with pins and needles. I also have a tight band around my chest. I had the surgery done Sept.2010 with no relief what so ever from pain. I have tried Lyrica, tramacet, amytriptyline, oxycotone.................No help! Do you think that maybe the doctor who did my surgery missed something somewhere? I give up and don`t know where to turn. Crying has become an everyday event in our house. Yes it has become hard on the entire family now. Any suggestions??
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Re: ccsvi

Postby Lyon » Wed Mar 09, 2011 2:10 pm

..
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Postby drsclafani » Wed Mar 09, 2011 4:52 pm

SaintLouis wrote:Dr. Sclafani,

I read on your "Dr. Sclafani dialogues with other physicians" thread a comment you made about a patient who came to you that had been treated elsewhere and had a clot in their leg vein from someone pushing too hard or too long post-procedure to stop the bleeding.

I, being a worrier, did no even have this on my radar of things to worry about...but now I do! Would you say that situation is pretty rare and that the facility where it was done was not typical? Or should we always be aware of how long/hard someone presses on the vein post-op? Yikes.


I think that this is pretty uncommon but who is to know? if my patient had never had a second venogram, perhaps no one would ever have known. You see, the patient in question had no signs or symptoms that would have made me think about it. It was only because i was trying to enter the saphenous vein instead of the femoral vein that i needed ultrasound for guidance. Having had ultrasound and not finding the femoral vein, the diagnosis was made. Surrendipity!

The thrombosis may have been caused by excessive force or time compressing the vein puncture site. It could also be secondary to the exposed intima of the puncture. or it could have been caused by a hypercoagulable state.

So, if i am not to be superfluous here, you should be AWARE of what is being done but not necessarily worried about it. You have enough to worry about in your life.
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Re: ccsvi

Postby drsclafani » Wed Mar 09, 2011 4:55 pm

Lyon wrote:
drsclafani wrote: or organize in which the clot turns into scar tissue. A recanalized vein can be reopened. a organized less likely
DR SCLAFANI,
Of course this refers to plaque in arteries but.......years ago one of my buddies had to go in for angio and the way he explained it (before he had the procedure. I never talked to him about the procedure afterward) was that they could balloon it, stent it or roto-root it.

The roto-rooter sounded interesting so I asked him about it and he said that they were able to either spin or blast the plaque and a filter or vacuum kept the pieces from causing problems.

If there really was any truth to that roto-rooter thing, why couldn't that be used for both of the above mentioned situations? (recanalized and/or organized veins)


yes there are a number of techniques to open up these occluded veins but rethrombosis is frequent.

chemical thrombolysis
mechanical thrombolysis
suction thrombectomy
surgical declot
balloon thrombectomy
laser
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Re: Severe nerve pain

Postby drsclafani » Wed Mar 09, 2011 5:05 pm

lovebug wrote:Does Dr.Sclafani have any ideas as to what can be done about nerve pain? My entire arm and hands are numb with pins and needles. I also have a tight band around my chest. I had the surgery done Sept.2010 with no relief what so ever from pain. I have tried Lyrica, tramacet, amytriptyline, oxycotone.................No help! Do you think that maybe the doctor who did my surgery missed something somewhere? I give up and don`t know where to turn. Crying has become an everyday event in our house. Yes it has become hard on the entire family now. Any suggestions??


dear lovebug
this is not my expertise yet. I will try to be a complete ms specialst but that will take some time

i can never say whether the first procedure is technically satisfactory. We all miss things, we all dont meet perfection every time. So, i would think that the least you could do, having now entered this road, is to check with your ccsvi doctor and ask him to review and rethink whether he is confident that everything possible has been done. You can get a second opinion of the end results of the treatment by asking your doctor to give you a copy of the venograms and have someone else look at them. you could get a ccsvi ultrasound to see whether there is still something there, or see whether a thrombosis has occured,

and you could do that again for your pain doctor too. Perhaps another pain doctor has an alternative

Good luck....my heart goes out to you for your pain
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Postby lovebug » Wed Mar 09, 2011 5:35 pm

Thank you so much for taking the time to respond to my problem. I had the surgery done Sept.2010 in California and I had a followup doppler ultrasound done in Nov. 2010 in Calgary and the blood was flowing and all looked good. Perhaps I will get in contact with the doctor who did my surgery and see if he has any further suggestions as to what could be done now. Since my surgery I have had no improvements what so ever! According to my doctor all went well during the surgery. My RJV was constricted at the valve at the collar bone level 70% and the LJV was constricted also at the valve at the collar bone level 50%. He said the azygous vein was o.k. So angioplasty was done. I have the CD of the venogram that was done. If this doctor says that there is nothing else he can do could I possibly have you look at the CD and give me your thoughts. I will pay any fees here required to you to look into this for me. Thank you again.
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congratulations

Postby Cece » Wed Mar 09, 2011 7:14 pm

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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 09, 2011 7:24 pm

drsclafani wrote:I started this thread because i saw some misinformation regarding CCSVI and its treatment being shared by two patients. I felt compelled to set the record straight and this led to an outpouring of expressions of interest and curiosity. I found myself answering questions on many threads and was getting lost. Thus i created DrSclafani answers some questions where patients and their caregivers could share concerns and questions and hopefully find some answers.

We are all learning about this as we go along. I hope that I am helpful to the cause.



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Postby HappyPoet » Wed Mar 09, 2011 8:12 pm

CONGRATULTIONS: HALF A MILLION VIEWS!

Dr. Sclafani, as it so happens, those two patients you refer to and had helped were me and Cece; our posts, found on Page 1, discuss the route the catheter takes to reach the jugular vein. And 311 pages later, you're still helping us. :D

P.S. Cece and I were backing up each other to make the celebratory post on time. Thanks, Cece!

Edit: Cece, thanks, also, for the amazing graphic. Wow!
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Postby Cece » Wed Mar 09, 2011 8:21 pm

HappyPoet wrote:P.S. Cece and I were backing up each other to make the celebratory post on time. Thanks, Cece!

If you noticed, my post went up at 499,999 ... and then the count stayed at 499,999! Apparently my post did not count as a view. 8O

My daughter was counting down with me. It delayed her bedtime. She did not mind.

Thanks, Dr. Sclafani, 500,000 views is an impressive milestone, it represents such a large number of people who have been touched by what you have taught and shared here.
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