DrSclafani answers some questions

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

Postby drsclafani » Mon Jul 05, 2010 4:05 am

Image[/quote]

i retract my apology....somehow, not sure how i corrected things, but the picture is now visible
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Postby aliyalex » Mon Jul 05, 2010 4:09 am

Dr S, you are the best!! Aliyah
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Postby friday_fc » Mon Jul 05, 2010 4:12 am

Doctor, hello from me, my virgin post to you.

Please advise me, is it wrong to not be prescribed any blood thinning medication at all after having angioplasty? Reason I ask is 3 of my friends who had this procedure (ballooning only) have not been given or advised to take them as post care routine.

Should I be concerned if I, also, am not given a prescription after my upcoming procedure?

Many thanks in advance - not only for an answer to this question, but for all you do.
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Postby drsclafani » Mon Jul 05, 2010 4:24 am

friday_fc wrote:Doctor, hello from me, my virgin post to you.

Please advise me, is it wrong to not be prescribed any blood thinning medication at all after having angioplasty? Reason I ask is 3 of my friends who had this procedure (ballooning only) have not been given or advised to take them as post care routine.

Should I be concerned if I, also, am not given a prescription after my upcoming procedure?

Many thanks in advance - not only for an answer to this question, but for all you do.


friday_fc
I will be gentle.

there have been no studies that compare randomly angioplasty of the jugular veins in CCSVI with or without post procedural anticoagulation. Some physicians use anticoagulation (heparin, lovenox, fondaparinux , coumadin) , some use antiplatelet drugs (plavix, aspirin) others use both, and others use neither. without randomized trials, we just do not have good information to make a definitive treatment plan. Things just become arbitrary.

in the only published series (zamboni's) anticoagulation was used for three weeks.

in my first patient, I did not begin by using anticoagulation, an inaction i regret. by the time I used it, clot had formed in the jugular and that terribly diseased vein was ultimately lost forever.

So while the exact regimen I use keeps changing as i learn, i continue to use short term anticoagulation, clearly based upon my experiences.

good luck to you
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Postby friday_fc » Mon Jul 05, 2010 4:31 am

drsclafani wrote:
friday_fc wrote:Doctor, hello from me, my virgin post to you.

Please advise me, is it wrong to not be prescribed any blood thinning medication at all after having angioplasty? Reason I ask is 3 of my friends who had this procedure (ballooning only) have not been given or advised to take them as post care routine.

Should I be concerned if I, also, am not given a prescription after my upcoming procedure?

Many thanks in advance - not only for an answer to this question, but for all you do.


friday_fc
I will be gentle.



Made me blush.......its been a while (and he was Italian).....STOP IT Friday, *ahem* thanks for your answer - I will try to insist on a 3 week course of something afterwards. See how i go. wink
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Postby ErikaSlovakia » Mon Jul 05, 2010 5:32 am

Dear Dr. Sclafani!
The picture is great :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby PCakes » Mon Jul 05, 2010 7:18 am

Please explain how the procedure would/could/might correct a malformed valve?

Took the not so important question out hoping you'd touch on the one, above, that i really need an answer to. My doppler revealed valve issues.. MRV no stenosis.
Just this weekend i found out that my nephew's daughter is now presenting symptoms.. she is only 20.. .. this is such crap...my heart is heavy.
Thank you.
Last edited by PCakes on Mon Jul 05, 2010 8:51 pm, edited 1 time in total.
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Postby drsclafani » Mon Jul 05, 2010 9:43 am

friday_fc wrote:
drsclafani wrote:
friday_fc wrote:Doctor, hello from me, my virgin post to you.

Please advise me, is it wrong to not be prescribed any blood thinning medication at all after having angioplasty? Reason I ask is 3 of my friends who had this procedure (ballooning only) have not been given or advised to take them as post care routine.

Should I be concerned if I, also, am not given a prescription after my upcoming procedure?

Many thanks in advance - not only for an answer to this question, but for all you do.


friday_fc
I will be gentle.



Made me blush.......its been a while (and he was Italian).....STOP IT Friday, *ahem* thanks for your answer - I will try to insist on a 3 week course of something afterwards. See how i go. wink


time out. it is now time to be rough

you should not be telling your doctor what to do. You can question what he wants to do, you can advocate for him to do something, but i caution about steamrolling doctors, especially by quoting DrSclafani answers some questions.
as there is no hard evidence on the use of anticoagulation after angioplasty of these veins, you need to be gentle with the good doctor.
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Postby fogdweller » Mon Jul 05, 2010 10:47 am

Nunzio wrote:
drsclafani wrote:
It depends upon which veins are used to infuse the chemotherapy. If the port is placed into the jugular veins, it could worsen the outflow obstructions. If it were in the subclavian vein, it could also cause damage that vein and worsen CCSVI.
Multiple Sclerosis: The recommended dosage of Mitoxantrone is 12 mg/m2 given as a short (approximately 5 to 15 minutes) intravenous infusion every 3 months.

Read more: http://www.drugs.com/pro/mitoxantrone.h ... z0snXImb6N
Normally this is done through a normal IV in the arm which is removed after the infusion.


Thans, all. The arm is where the infusion was located. I was wondering because I had a vein visably collapse in my upper arm not whee the infusion was located and I was wondering if the mitoxantorone in the bloodstream might have been damaging. It was probably just another thing that happens on the exciting road through older age.
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inverted valves in both jugular veins

Postby LadyGazelle » Mon Jul 05, 2010 11:39 am

Doppler impression: Questionable inverted venous valves in both internal jugular veins low in the neck just above the clavical with increased venous flow through the vetebral veins in both the supine and sitting positions. The internal jugular veins appeared relatively normal in caliber.

Recommendation: Might recommend MR venogram to further assess the cerebral spinal venous flow to determine whether these questionably inverted valves are true producing reflux or simply artifact on the ultrasound.

If the MRV scheduled for 7/7/10 shows they are in fact inverted valves, would balloon venoplasty keep the valve open when the balloon is removed?

I'll WAIT for improved stent procedure if that's required. :roll:
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valves

Postby Cece » Mon Jul 05, 2010 11:46 am

LadyGazelle, here is something he once said about valves, from the first page of this thread:
drsclafani wrote:I worry that these valves are going to be a real bugger, incomplete treatments, recurrent obstructions. One gets the sense that something will be ultimately needed to fix the abnormal valve against the wall and stop it from restricting blood flow. perhaps stents are the answer, or some endovenous procedure that resects the valve, or some other technique beyond my imagination at the moment. Surgery on veins, i am told by my vascular surgical colleagues is not without failure.

This is all so new.

so my answer is rather philosophical.

You are all pioneers and are looking for answers at the front of the wave. It it were neurosurgery, i might say, wait awhile. But jugular venoplasty and valvuloplasty is not particularly dangerous. So i think the decision is about how far out into the frontier you want to travel. Me? I would venture forth and look for a solution to some future recurrence or complication when i see it

Also, I see that it is your first post, welcome!!

Here is another post of an answer to a valve question. I believe this is from before he started using the cutting balloon, I am not sure if that changes things:
drsclafani wrote:
Could ballooning solve valve problems?


The valves are leaflets of tissue that are attached to the wall and close periodically by coming together. in ccsvi Some of the valves are thickened mounds of tissue that do not open and close at all, some just do not open all the way, some do not close all the way, some seem to have the leaflets fused partially or completely. , some form pockets adjacent to the lumen and balloon up some times. In all situations they restrict the flow of blood coming out of the neck and brain.

Angioplasty attempts to tear the valve's attachment to the wall or split apart any fusion of the leaflets, or stretch wall adjacent to it. So it is not one question, one problem, or one solution. I do see improved flow, but we will have to wait to understand the natural history of the treatments.

We have a long way to go to understand these problems and determine the best way of treating the various problems. Bottom line, stay tuned. and keep asking the good questions.

Does that help you?
"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
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Advice for IRs New to Procedure

Postby MS_HOPE » Mon Jul 05, 2010 12:39 pm

Dear Dr. Sclafani,

Will you share what advice you would give an IR or vascular surgeon doing the CCSVI angioplasty (venoplasty?) for the first time? (We’re urged to Go Local here, but I have concerns about being the first in line – I’m not as brave as Joan’s Jeff and so many others!) I know you’ve mentioned some things already, but in case there’s anything else.

I've not been screened for CCSVI yet; dx SPMS ten years ago, at age 48. In trying to keep my costs down, would it be reasonable to skip the Doppler ultrasound and MR venogram and go straight to the catheter imaging and, if necessary, angioplasty? I’m going to try to locate a local IR or vascular surgeon who’s experienced with angioplasty – any other suggestions for qualifications? (Other than open mind, of course!)

Thank you so very much for all your shared insights and humor. And a word of caution - don’t let your wife know that you’ve been corresponding on the internet with all these women who are in love with you!
:D
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Postby Cece » Mon Jul 05, 2010 12:56 pm

I've heard the Go Local refrain, but I lean toward Go Expert instead, along with simply Go Go Go. :)

Some previous advice from Dr. Sclafani:
drsclafani wrote:
North52 wrote:Dr. Sclafani,

If I was an interventional radiologist without any experience in CCSVI,interested to start performing balloon angioplasty, what would be the most important pieces of advice you would give me?

What would be typical mistakes and perhaps harmful mistakes I could make and how can I best avoid making them?

Thanks,

North


First I would be an interventional radiologist, because that would give me the most experience to prepare me for this work.

then i would read everything i could about this entity because the technical side is not the most difficult. it is getting into a zen with the disease. understanding what problems the veins could have

then i would determine for myself whether this made sense and whether i would be good at this and would be doing good for the patient because PRIMUM NON NOCERE......or first do no harm

then i would find a neurology partner because someone has to prove the diagnosis, and treat the patient's MS

then i would read some more, this time about MS, maybe join TIMS to learn from patients how to deal with their concerns and issue :idea: because there is a human being on the other side of the catheter

then i would look for a seminar where this is taught, and hear from those with experience because people have already learned a lot

then i would really get to know my first patient very well, to make sure that person was courageous, knowledgeable and a true partner because there are political issues, etc that need support

Then i would get an IRB to avoid getting shut down :evil: because getting shut down is NO FUN and causes emotional distress for everyone and because we owe it to humanity to document and report the results and to protect patients

and share with administration because if they do not understand, they will never support this

then i would do my first case because there is a patient on the other side of the catheter
"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
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Postby MS_HOPE » Mon Jul 05, 2010 1:18 pm

Wow, Cece, are you the master of the "Search" function or what? I guess unless Dr. Sclafani has an update to his earlier response, then just my second question remains....

Thanks, Cece.
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Re: Transcranial Doppler and Venogram

Postby Cece » Mon Jul 05, 2010 1:25 pm

drsclafani wrote:I thought i answered this question, but cannot find the answer wo i will answer it again

not a problem, MS_Hope

Did you see this quote from DrS yesterday? It was a holiday, I was not quick enough! So today I am making up for it.... :)
"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
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