This Is MS Multiple Sclerosis Community: Knowledge & Support

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!

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)

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

cece, you are so awesome. (scuse the digression.)

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.

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.

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

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.

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:

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 />

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.

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

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.

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.



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?

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.

_________________
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

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................................................