DrSclafani answers some questions

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

Postby vivavie » Fri Oct 08, 2010 8:30 am

hello Dr Sclafani,

My CCSVI is probably due to the radiation I received for my tongue cancer, my veins are not healthy and flexible anymore. I posted before and I sent you all my images/reports again last week. After my angio in Aug my left jug recoiled to 2mm and a major collateral system developped. I had another venogram to correct this; 3 stents overlaping one I previously had (in April) were installed. But the blood still prefers the collaterals. Left jug now useless.

Since the Aug procedure I feel much much worse: fatigue and leg/feet pain are VERY bad. I have NO mobility problem but it is so bad that I spend 90% of my time in bed! Strangely the pain is less severe supine but my stenosis are in the jugulars!?!? Any explanation for this?

Statu quo is not an option! I had some improvements after 1st procedure in April. I would like to have my right jugular and my azygos angio with bigger balloons. 12 and 8mm were used. What do you think? There was a kink in azygos that was the only place ballooned, would you recommand to angio it all?

I have read somewhere that Prof Tomson in Australia had to redo angio again and again on veins of a patient who had cancer. Have you hear anything about that? When I posted in Aug you mentionned that my situation would probably require stent, you have recently took position against stents. In this case, do you think repeated angio more or less risky than stents?

How many times do you think a vein can take angioplasty?
Many thanks!
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Postby fogdweller » Fri Oct 08, 2010 9:59 am

How elastic are veins? I have read a number of contributors say that they had relatively quick return of symptoms that they feared was restenosis. I had some very immediated and dramatic results that I did not expect, and about a week later those improvements have faded somewhat, still slightly better but not nearly as much as first after the procedure.

How soon would you advise a second MRV to check for restenosis?

That would be a good study; follow up MRV (noninvasive) or veinograms (invasive...maybe instal a port a la dialysis...pretty drastic)
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Postby Cece » Fri Oct 08, 2010 11:04 am

vivavie wrote:How many times do you think a vein can take angioplasty?

Vivavie :( so sorry this is happening to you.

Here's a link to a previous question on how many times a vein can take angioplasty, not sure if it's relevant to your situation because of the complexities: http://www.thisisms.com/ftopicp-129181.html#129181
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Postby aliyalex » Fri Oct 08, 2010 11:20 am

cece, you are so awesome. (scuse the digression.)
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Postby fogdweller » Fri Oct 08, 2010 1:21 pm

drsclafani wrote:At some point the congenital deformity of the wall may be replaced by scar tissue that becomes too resistant to dilatation. Similarly stents are likely to have the same problems, with intimal hyperplasia and in-stent stenosis becoming resistant to dilatation.

At some point i suspect that we will need to add some things to angioplasty, either drug, or energy or structure, to reduce the frequency and degree of restenosis.


For awhile they were playing around with a "rotoroter" type device that bored out cardiac arteries to remove stenosis. I wonder if that might be useful in the more rigid scar tissue that might result from restenosis of these veins?

Although we use the same name, "restenosis", I think it is an entirely different phenomenon from restenosis in areteries clogged over time.
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Postby David1949 » Fri Oct 08, 2010 4:12 pm

I accidentally posted this under the general CCSVI listing instead of Dr. Sclafani's thread so I'm reposting it here now.


As I understand it, the valves in the veins act like check valves allowing flow toward the heart but not in the opposite direction. But when the catheter is inserted it goes in the opposite direction, the direction that the valve does not open. How does the catheter get past the valve?

I'm thinking like an engineer not a doctor. My appologies if I misunderstand how it works.
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Postby 1eye » Fri Oct 08, 2010 4:44 pm

fogdweller wrote:At some point i suspect that we will need to add some things to angioplasty, either drug, or energy or structure, to reduce the frequency and degree of restenosis.


For awhile they were playing around with a "rotoroter" type device that bored out cardiac arteries to remove stenosis. I wonder if that might be useful in the more rigid scar tissue that might result from restenosis of these veins?


I would have thought that type of device and possibly the clot-catching stent I have heard about would be used on clots. I suppose at some point the risk becomes too high and nothing more is done, even though the damage of CCSVI will continue indefinitely. This sounds like a very tough position to be in.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Fri Oct 08, 2010 6:22 pm

drsclafani wrote:with all due respect, i think on our side of the fence, mike dake and I have had to wait the longest....but does that mean we will get back sooner? or does it mean anthing at all

go yankees

It is crazy that the two that were first in the water have sat out this long.

I think on the MSers side the wait could also be measured in years since diagnosis, which is also humbling for me around here. But if this is the breakthrough, we made it....

Aliyalex, thanks
Zeureka, thanks too, that helped.
drsclafani, thanks as always
There is lots of awesome in this forum. :)
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Postby Nunzio » Sat Oct 09, 2010 8:26 am

drsclafani wrote:
TMrox wrote:
"Hi Dr Sclafani

I had the CCSVI procedure done in Providence, RI on September 23, 2010. He found the iliac vein under 50% blocked.

He did angioplasty on both jugulars and the azygos, but not the iliac. Have you seen the iliac vein blocked in any of your patients? If so, what percentage and what did you do for them?


Tim, it is detected from time to time. I do not treat it if there is no symptoms from it.


Dear Dr. Sclafani,
I am afraid we are falling in the same frame of mind as most neurologists which is " Why fix a vein if the patient has no symptoms ( except MS)?"
So let me see if I can make the point.
As you know, Zamboni/Galeotti always enter trough the left side when they perform a CCSVI treatment.
The reason is that they can check for restriction of the iliac vein as it enter the Inferior Vena Cava.
In that case the blockage will force the venous flow to use the Iliac-lumbar vein as a collateral.
See picture below:
Image
The blood flow that is going through the collateral will eventually drain in the Azygous vein overloading it and not allowing proper drainage of the spinal column.
Now the patient might have well compensated the restricted flow through the collaterals and not show any signs of May-Thurner syndrome, but still the collateral is overloading the Azygous vein.
Dr Galeotti found and treated this problem in about 5% of CCSVI patients.
He also checks and treats a similar % of patients with narrowing of the renal vein for the same reason.
You can see the full PDF presentation in Italian here:http://www.ospfe.it/attach/smcferrara/docs/galeotti%20.pdf
So, in conclusion I Think IR should follow Zamboni/Galeotti lead until additional reserch come up with better technique.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby magoo » Sat Oct 09, 2010 8:36 am

Cece wrote:
drsclafani wrote:with all due respect, i think on our side of the fence, mike dake and I have had to wait the longest....but does that mean we will get back sooner? or does it mean anthing at all

go yankees

It is crazy that the two that were first in the water have sat out this long.


I could not agree more Cece!!!!! It's totally crazy and unacceptable!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby 1eye » Sat Oct 09, 2010 8:53 am

I don't know why nobody has tried what my brother has had in his jugular for nearly 50 years: a plastic shunt. Restenosis and clot-occlusion are I think much less likely.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Jugular » Sat Oct 09, 2010 9:16 am

Cece wrote:
drsclafani wrote:with all due respect, i think on our side of the fence, mike dake and I have had to wait the longest....but does that mean we will get back sooner? or does it mean anthing at all

go yankees

It is crazy that the two that were first in the water have sat out this long.

I think on the MSers side the wait could also be measured in years since diagnosis, which is also humbling for me around here. But if this is the breakthrough, we made it....

Aliyalex, thanks
Zeureka, thanks too, that helped.
drsclafani, thanks as always
There is lots of awesome in this forum. :)
Can someone bring me up to speed on the Dr. Sclafani-CCSVI story? All I've been able to pick up is that his request for IRB was rejected based on bs. Have there been any legal challenges, appeals, rehearings, letter writing campaigns. We need Dr. Sclafani in the fight not on the sidelines. Who were these band of bozos who turned him down? F*^# them and the horses they rode in on.
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Postby nancymno » Sat Oct 09, 2010 9:30 am

drsclafani wrote:
TMrox wrote:Dear Dr Sclafani,

I'm posting these questions on behalf of Tim. He has tried to open an account in the forum on several occasions, but for some reason it has not worked.

"Hi Dr Sclafani

I had the CCSVI procedure done in Providence, RI on September 23, 2010. He found my left jugular vein 75% blocked, right jugular vein more then 50% blocked, azygos vein over 50% blocked, and the iliac vein under 50% blocked.

He did angioplasty on both jugulars and the azygos, but not the iliac. Have you seen the iliac vein blocked in any of your patients? If so, what percentage and what did you do for them?


Tim, it is detected from time to time. I do not treat it if there is no symptoms from it.

Ultrasound on September 24 showed right jugular vein open and flowing, but left jugular vein closed due to a blood clot. I am currently on lovenox 60 mg and coumadin 7.5 mg. I had my second blood test today to see if I am on the correct dosage of coumadin to stop the lovenox.

were you on blood thinners during and after the procedure??
so sorry this happened to you. It is pot luck whether the clot will spontaneously dissolve. The coumadin prevents new clot but doesnt really do anything for the old clot.

I am scheduled for another ultrasound on October 14, 2010 to see if the clot has dissolved. He wanted to stent after the clot on the next Monday to open the vein, but I declined the stent.

{quote]Have any of your patients clotted after the angioplasty? If so, what was your procedure and how long did it take for the clots to dissolve? Did all of the patients with clots have them dissolve through blood thinners or did you use other procedures as well? Is they still have clots do they have to stay on blood thinners for life?

i have had one patient develop blood clots in the vein. We spent three days in the hospital dissolving the clot but as soon as we dissolved it all, it clotted again. We eventually gave up and put the patient on coumadin for 3-4 months. After that the vein was permanently occluded by clot.

To let you know I am between diagnosis. At the age of 14 in 1971 I was diagnosed with Transverse Myelitis. In 2009, I was diagnosed with Optic Neuritis. I do not have lesions on the brain or cervical spinal cord so MS has not been diagnosed, but not ruled out. NeuroMyelitis Optica has not been diagnosed, but not ruled out. Having two demylinating diseases with both TM and ON have not been ruled out either. I also had a heart attack in 1996 at the age of 38 and a discectomy and spinal fusion at L5-S1.

Thanks for you listening and your advice.
Tim"


hang in there tim, and I hope that this works out for you[/quote]

My left iliac vein has a "substantial" blockage. The IR said she would treat it if I lived closer to her area. I have had swelling for the last year in my left ankle. More recently I have had a slight swelling in my right ankle. Could the left iliac blockage account for this swelling?
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Postby sbr487 » Sat Oct 09, 2010 9:38 am

Dr. S, thanks for answering my previous set of questions.

Dr. S, given stenosis in both the IJV, do you think it might be prudent to first open up either one of the IJV and see if that helps and then take a call on the other one?
Someone brought up this point that Dr. Vogl in Germany treats both the veins but with a gap of a week or so, since that would reduce the chances of restenosis of both the veins at the same time. My question is really an offshoot of that.
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Dr. Sclafani answers questions

Postby belsadie » Sat Oct 09, 2010 9:39 am

Dear Dr. Sclafani.
I am wondering just what implication this finding after an angioplasty has on my persistent Left sided disability : "No anatomic continuity could be established between the upper Right internal jugular vein and sigmoid sinus. The upper Right internal jugular vein appears narrowed but was not treated since continuity cannot be established."
I'm going for a f/u this month....Can you give me some insight before our meeting .
Thanks for being so smart................................................
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