DrSclafani answers some questions

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

Postby PCakes » Thu Nov 25, 2010 10:18 am

Cece wrote:Again I'm struck that your patients are very fortunate to be your patients. And we are very conscious of it.

CCSVI@aac-llc.com, quickly, everyone....


.. I sure hope you have your bag packed ;)

Happy Thanksgiving :)
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Postby dania » Thu Nov 25, 2010 11:12 am

Dr Sclafani is there any way of preventing Intimal Hyperplasia? I have had the procedure done twice, Got some great improvements that disappeared after 1 week. With the third attempt all 3 veins are now 100% blocked. It seems usless to keep trying without addressing this problem first.
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Postby fogdweller » Thu Nov 25, 2010 11:23 am

dania wrote:Dr Sclafani is there any way of preventing Intimal Hyperplasia? I have had the procedure done twice, Got some great improvements that disappeared after 1 week. With the third attempt all 3 veins are now 100% blocked. It seems usless to keep trying without addressing this problem first.


Dr. S., this is concerning. It seems to suggest that angioplasty might triggers hyperplasia which might totally clog up the veins.

I, too had improvements for a short time, 3 days or so, that faded. I am probably not worse now, but certainly not better. I had reason to believe that I had restenosed fairly quickly, perhaps with thrombosis ( does that happen? Does thrombosis cause long term restenosis of sorts?). Is it possible that retreatment makes the problem worse?
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Postby dania » Thu Nov 25, 2010 12:41 pm

fogdweller wrote:
dania wrote:Dr Sclafani is there any way of preventing Intimal Hyperplasia? I have had the procedure done twice, Got some great improvements that disappeared after 1 week. With the third attempt all 3 veins are now 100% blocked. It seems usless to keep trying without addressing this problem first.


Dr. S., this is concerning. It seems to suggest that angioplasty might triggers hyperplasia which might totally clog up the veins.

I, too had improvements for a short time, 3 days or so, that faded. I am probably not worse now, but certainly not better. I had reason to believe that I had restenosed fairly quickly, perhaps with thrombosis ( does that happen? Does thrombosis cause long term restenosis of sorts?). Is it possible that retreatment makes the problem worse?

I developed clots in the 1 stent I had but the other 2 veins had only been angioplastied and there were no clots in those 2. But they were now closed completely.
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Postby NZer1 » Thu Nov 25, 2010 1:03 pm

What an Man, WOW, Way to go.
Special thanks for your patience and commitment to us all.
Please let me know when you will be setting up shop in NZ :lol:
All the best, Nigel
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Postby Bear2 » Thu Nov 25, 2010 2:45 pm

drsclafani wrote:
Image
Finally, the venogram after this angioplasty shows some filing defects but the flow was phenomenal. I believe the filling defect is a detached part of the valve.



Dr Sclafani,

Those are beautiful images. Is the use of high pressure ballons common. Are those images from someone local? I really want to meet this gal or guy.

Jim


jim
are you referring to the doctor or the patient :wink:

I do not think that the use of high pressure balloons is common. They are 2 or 3 times more expensive


Dr. Scalafani,

I am interested in the Dr who uses the high pressure ballons and was able to open that valve with the 18mm balloon @ 14 atmospheres.

Very excited that you got to start working again.
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Postby Cece » Thu Nov 25, 2010 3:08 pm

fogdweller wrote:
dania wrote:Dr Sclafani is there any way of preventing Intimal Hyperplasia? I have had the procedure done twice, Got some great improvements that disappeared after 1 week. With the third attempt all 3 veins are now 100% blocked. It seems usless to keep trying without addressing this problem first.


Dr. S., this is concerning. It seems to suggest that angioplasty might triggers hyperplasia which might totally clog up the veins.

I, too had improvements for a short time, 3 days or so, that faded. I am probably not worse now, but certainly not better. I had reason to believe that I had restenosed fairly quickly, perhaps with thrombosis ( does that happen? Does thrombosis cause long term restenosis of sorts?). Is it possible that retreatment makes the problem worse?

Here's a link to Dania's thread, I don't suppose there's been any solution? :(

http://www.thisisms.com/ftopic-14158-da ... asc-0.html

Fogdweller, she had hypercoaguability issues, so it's a more rare situation. Dr. Sclafani commented on it here:
http://www.thisisms.com/ftopicp-138503.html#138503
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Postby mlrm » Fri Nov 26, 2010 5:21 am

Dear Sal,

Thanks for your reply! It was a great help for me on my trip to Poland!

It was a very though trip but my veins are open, so thats great:-)

If you are interested in reading my story you can go to my webpage:

mariesflowoflife.dk

PLEASE come to Denmark soon! I hear that you have a good friend in the danish hospital Rigshospitalet. Can't you guys put your heads together on how to convince the stiff neurologists of our country? You are greatly needed!

And you can stay with us if you like -no cost;-)

Sincerely

Marie Louise
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Postby Algis » Fri Nov 26, 2010 6:15 am

Doctor: another quick question, if I may:

Could stenoses be dynamics? I mean be there in some circumstances (position, muscle pressure, even metabolic, or...?) and absent in others. With time they could evolute in "permanent" stenoses.
This and the endothelial health of the veins would regulate the onset, RR, SP and so on of the MS.

Thinking loud and brain's boiling; I need a cold beer :D
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Azygous Vein

Postby Opera » Sat Nov 27, 2010 3:30 am

Dear Dr Sclafani,
My very sincere thanks for starting a network of clinics for CCSVI treatment.

I have a question with no one who can provide an answer. I hope you can help me.

I underwent ballon angioplasty for bilateral jugular stenosis with no improvements to symptoms. At that time, I was told that my azygous vein is normal with a pressure of 12 mm. In the superior azygous vein the pressure was 9 mm.

I was surprised that my azygous was normal because an MRI of the Cervical Spine showed demyelination plaques at C 2/3, C5, C6 and T2/3.

My understanding is that there are lesions in the spinal cord only if there are problems with the azygous vein.

I would appreciate any feedback you can give me on this issue.

Thank you for everything you are doing for us and kind regards.
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Postby fogdweller » Sat Nov 27, 2010 11:35 am

Cece wrote:
fogdweller wrote:
dania wrote:Dr Sclafani is there any way of preventing Intimal Hyperplasia? I have had the procedure done twice, Got some great improvements that disappeared after 1 week. With the third attempt all 3 veins are now 100% blocked. It seems usless to keep trying without addressing this problem first.


Dr. S., this is concerning. It seems to suggest that angioplasty might triggers hyperplasia which might totally clog up the veins.

I, too had improvements for a short time, 3 days or so, that faded. I am probably not worse now, but certainly not better. I had reason to believe that I had restenosed fairly quickly, perhaps with thrombosis ( does that happen? Does thrombosis cause long term restenosis of sorts?). Is it possible that retreatment makes the problem worse?

Here's a link to Dania's thread, I don't suppose there's been any solution? :(

http://www.thisisms.com/ftopic-14158-da ... asc-0.html

Fogdweller, she had hypercoaguability issues, so it's a more rare situation. Dr. Sclafani commented on it here:
http://www.thisisms.com/ftopicp-138503.html#138503


Thank-you, Cece. As always, very helpful. I guess the answer is yes. The original stenosis is probably structural, maybe congential formation. After angioplasty the patient (me) may experience hyperplasia, which could result in a stenosis worse than the original structural blockage. bummer. Makes follow-up even more important, and as yet I have had no luck in getting that and it has been almost 2 months. I am still trying to get an itemized bill out of Pacific Interventionalists so I can bill my insurance company. I guess once they got payment, I wasn't much of a priority.
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Postby Cece » Sat Nov 27, 2010 12:00 pm

Important links, for safe-keeping:

Dr. Sclafani's Happy Thanksgiving announcement that he will be treating full time in January:
http://www.thisisms.com/ftopicp-143965.html#143965

Michelle's announcement on the nationwide network of clinics:
http://www.thisisms.com/ftopicp-143967.html#143967

Holly's announcement on the waiting list application:
http://www.thisisms.com/ftopicp-144029.html#144029

fogdweller wrote:Thank-you, Cece. As always, very helpful. I guess the answer is yes. The original stenosis is probably structural, maybe congential formation. After angioplasty the patient (me) may experience hyperplasia, which could result in a stenosis worse than the original structural blockage. bummer. Makes follow-up even more important, and as yet I have had no luck in getting that and it has been almost 2 months. I am still trying to get an itemized bill out of Pacific Interventionalists so I can bill my insurance company. I guess once they got payment, I wasn't much of a priority.

Okay that makes me :evil: , you still haven't been re-checked.

As I understand it, you've been turned away for follow-up from your original clinic and turned away by at least one other clinic because they don't want to treat someone who was treated elsewhere.

Dr. Sclafani, one of your AAC sites is in California, as is fogdweller. Do they have rules against seeing someone who was treated elsewhere? Fogdweller, would you travel within California if you could get in?

Have you been on any anticoagulation at all since the procedure? If I'm remembering right, was it aspirin only? If a clot becomes permanent in three months, you're at two months post-procedure. I don't mean to say you have a clot, but if it hasn't been checked, it hasn't been ruled out.

(Dr. Sclafani, does a clot becomes permanent in three months? I'm not actually sure about that.)
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Postby belsadie » Mon Nov 29, 2010 11:51 am

Dr. S. I had angioplasty in Aug. two jugs and azygos ballooned and remain patent after 3 months [acc. to an ultrasound of jugs., the azygos not visualized] However, two Zamboni criteria are positive, still. Will you discuss this kind of situation with an appointment to review all the results? What's your advice?
Happy Holidays! :roll: :?: :roll: :?:
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Postby HappyPoet » Mon Nov 29, 2010 6:18 pm

CONGRATULATIONS
400,000 VIEWS ! ! !


Dear Dr. Sclafani,

Wishing you the best of success doesn't seem like nearly enough for all you've done for so many people. You stuck with us through thick and thin, and I'm sure you never thought you'd face the challenges and frustrations that define CCSVI.

We would have understood if you had stopped posting at anytime; after all, Internet message boards are not always the most hospitable of places. Yet, you stayed and created a safe haven filled with interactive learning for everyone. You ease our fears by answering question after question after question... thousands of our questions.

You changed your life for us when your retirement and the "good life" were just around the corner waiting for you. Only a very compassionate and deeply committed person could start off on this new, unchartered path that's guaranteed to be full of complex problems and many unknowns. Perhaps you will never be able to retire because now that we have you, we will not let go of you easily.

Your posts are like beacons of light (usually appearing in the middle of the night when you should be sleeping) that guide everyone through the foreign land of CCSVI. Every one of the 400,000 views on "drsclafani answers some questions" represents a gift, a priceless gift of knowledge, hope, and friendship from you to each of us.

How can we ever repay you for everything you've given us, Dr. Sclafani?
.
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Postby drsclafani » Mon Nov 29, 2010 10:18 pm

dania wrote:Dr Sclafani is there any way of preventing Intimal Hyperplasia? I have had the procedure done twice, Got some great improvements that disappeared after 1 week. With the third attempt all 3 veins are now 100% blocked. It seems usless to keep trying without addressing this problem first.

dania
i am not sure of your diagnosis of intimal hyperplasia.What you have is a narrowed vein after three angioplasties

i would consider the following causes
1. elastic recoil
2. intraluminal thrombus
3. untreated outflow obstruction
4. intimal hyperplasia

intimal hyperplasia is unlikely to occur in one week.

to answer your questions, yes there are methods of inhibiting intimal hyperplasia

cryoplasty, where the wall of the vessel is cooled by the balloon
drug eluting stents reduce intimal hyperplasia
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