DrSclafani answers some questions

[drsclafani]

My mother had the liberation treatment done by Dr. Simka last June (2010).

She has had follow-up ultrasounds here in Ontario, but of course there is nobody who will deal with anything around CCSVI here.

The first follow-up at six months was fine, another done two weeks ago looks not so great (restenosis?)

"The internal jugular stent appears patent with internal hyperechoic echos. Venous insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees. Conclusion: Patent left IJV stent, with partial thrombus/or fibrointoimal hyperplasisl and venous reflux."

Any advice? Is this basically saying "need CCSVI round 2" ?

Many thanks,

Kariné

i would think that perhaps anticoagulation and antiplatelet therapy might be helpful. You need to find out how much of the stent is filled with thrombus or hyperplasia. Hopefully intimal hyperplasia may resolve with more time.

i hope you have a doctor to advise you, send the images to dr simka/ludgya

[griff]

Since i think that most of the stenoses are valvular problems, i would suspect that the history of current treatment of stenosis is representative. However if valve stenosis is treated, then there is hope that we can improve restenosis rates in the long run because we may not need to stretch the normal vein resulting in injury that goes on to stenosis.

Dr Sclafani, does this mean that so far most of us veins have been dilated (maybe unnecessarily) causing potential trauma (and hence potential scarring) to the vein walls?

[Algis]

potential trauma (and hence potential scarring) to the vein walls

Actually I am pretty worried of that; but on an other hand: many peeps get stabbed; shoot at; slip throat'ed ( ) and some recover; their veins never seem to be an issue...

People have organs cut, replaced, radio'ded, pierced and some I can't even translate... But the veins just seems like a ditch where everything goes and get drained; nothing more, nothing less...

Why is that?

[drsclafani]

Since i think that most of the stenoses are valvular problems, i would suspect that the history of current treatment of stenosis is representative. However if valve stenosis is treated, then there is hope that we can improve restenosis rates in the long run because we may not need to stretch the normal vein resulting in injury that goes on to stenosis.

Dr Sclafani, does this mean that so far most of us veins have been dilated (maybe unnecessarily) causing potential trauma (and hence potential scarring) to the vein walls?

no...the dilatation may have been of the appropriate diameter and at the correct location. Injury depends upon how much bigger than the normal vein the balloon is dilated. The stenosis that everyone is treating is generally at the same level. it is the understanding of the nature of the stenosis that is changing. That understanding can drive treatment logic

[griff]

Since i think that most of the stenoses are valvular problems, i would suspect that the history of current treatment of stenosis is representative. However if valve stenosis is treated, then there is hope that we can improve restenosis rates in the long run because we may not need to stretch the normal vein resulting in injury that goes on to stenosis.

Dr Sclafani, does this mean that so far most of us veins have been dilated (maybe unnecessarily) causing potential trauma (and hence potential scarring) to the vein walls?

no...the dilatation may have been of the appropriate diameter and at the correct location. Injury depends upon how much bigger than the normal vein the balloon is dilated. The stenosis that everyone is treating is generally at the same level. it is the understanding of the nature of the stenosis that is changing. That understanding can drive treatment logic

Thank you, dr Sclafani. I must admit that I am afraid of getting scarring, so your words sound good. I was just reading 20% scarring ratios with repeated angioplasties of coronary arteries, etc.

[1eye]

Dr. Sclafani:

I am gaining incredible respect for you by watching this present discussion. What seems to be happening I cannot even fathom.

I am eager to hear more. God speed.

[vivavie]

Hopefully intimal hyperplasia may resolve with more time.

Hum, I thought hyperplasia gets permanent with time!?

I was devastated when I learned that my stents were getting occluded again! I tried to ignore it for a while... but I know it is getting worse. I feel the same way as when my jug collapsed: same kind of numbness in legs (as if opening of bottle of champagne), pain is increasing and getting weaker by the day. From going up and down the stairs loaded with boxes after the Feb procedure to a wheelchair by the end of the month!

I am going for another US mid May.

Options:
1- Forget about the LIJ: not anymore, it makes too much a difference!

2- Angioplasty to reopened the stents before it is permanent. Will it stabilized with time or keep coming back?

3- Adding a covered stent; 1st time I had candywrap stenosis. Being covered won't prevent that??

4- Radio Frequency ablation as read on Facebook by Dr McGuckin, Do you do that?

What do you think? Are there any other options?

This past year has been very difficult emotionnally and financialy, I have to make the best decision... soon

[WeWillBeatMS]

Dr Sclafani,

I'm two weeks out from flying up to Brooklyn for the testing and procedure with you and I'm getting a little concerned (to say the least) about restenosis. What are the restenosis rates that you are seeing for people now? Also, daily I take 2,000 IU D3 daily, 500 MG of DHA (fish oil) Nordic Natural pills, 81 mg aspirin twice a day, and I do pretty good eating healthy. Are there any things you would recommend I do in these last few weeks to help my chances of not restenosing?

thank you,

WeWillBeatMS

Let me explain why i cannot give a good answer for this question. It is based upon the misfortune I had when the hospital stopped my program.

The vast majority of my patients have been done after a six month hiatus brought about when the hospital forbade me to perform the procedure. I resumed on weekends in November, so the vast majority of my patients have been treated in the past six months with most of those in the past four months. According to Zamboni, most restenosis occurs after the seventh month after treatment. Therefore my data is not old enough to give a good reflection of restenosis.

Let's review the cumulative restenosis rate described by Zamboni



In this chart, he evaluates the percentage of patients who are patent over time. You can see that there is an overall progressive increase in the number of patients who restenosed


If we look at the chart we seen that most of the restenosis occurs between 8 and 16 months.


You can see with time the percentage of patients who did not restenose went from 100% to 47% at 18 months.
At 90 days about 90% had not restenosed. (orange)
at 180 days about 85% had not restenosed (yellow)
At 210 days about 65% are stenosis free (green)
At one year about 55% have no stenosis (purple
at 18 months only 47% of patients have not restenosed.(red)

So we can expect that at least half of patients will restenose. Reducing intimal damage by procedural and medical manuevers, by healthy living practices such as cessation of smoking, better nutrition, etc MAY prolong the interval to restenosis. Surveillance by ultrasound mayhave value.

This restenosis seems to be an inevitable occurence in the majority of patients. We have to live with it until new devices, new medical therapies and new techniques reduce this problem.

This is very common in medical practice. People get infections. they get treated. they get another infection. Diabetics blood sugar goes up, is treated, come down, goes up again.

Face it, we are partners for a long time

S

I definitely appreciate the well thought out response even if it is not exactly what I was hoping for.


WeWillBeatMS

[WeWillBeatMS]

Dr. Sclafani,

Are the external jugular veins also tested for CCSVI? I know that they have not proven to be a regular problem but what about for the people like myself who have lost hearing in one ear? And at times even my good ear rings and pops and feels plugged like my bad one does all of the time.

WeWillBeatMS

[THEGREEKFROMTHED]

Sal, two questions.

First--any reason why entering "veins" from a different location would be in any way beneficisl in your estimation??? as in this new "artery" findings...

http://www.tennessean.com/article/20110 ... 0/SPORTS02


Second--Is it true Osama Bin Laden had donated his jugular veins to Suny Downstate for scientific purposes prior to perishing?

www.thegreekfromdetroit.com
[/u]

[Donnchadh]

Dr. Sclafani,

Are the external jugular veins also tested for CCSVI? I know that they have not proven to be a regular problem but what about for the people like myself who have lost hearing in one ear? And at times even my good ear rings and pops and feels plugged like my bad one does all of the time.

WeWillBeatMS

Dr. Makris routed though my external Jugular vein to bypass the collateral veins, and it was fine. So it is entirely possible to check it out.

Donnchadh

[drsclafani]

Sal, two questions.

First--any reason why entering "veins" from a different location would be in any way beneficisl in your estimation??? as in this new "artery" findings...

http://www.tennessean.com/article/20110 ... 0/SPORTS02

we have discussed entering the vein from the neck. This has value when we cannot get the catheter to get beyond the obstruction
Another possiblel optionis to enter the right and the left jugular veins from the arm. but i am not overwhelmed by this option. At best it is a niche accesss for the vein.l

[drsclafani]

Dr. Sclafani,

Are the external jugular veins also tested for CCSVI? I know that they have not proven to be a regular problem but what about for the people like myself who have lost hearing in one ear? And at times even my good ear rings and pops and feels plugged like my bad one does all of the time.

WeWillBeatMS

The external jugular drains the face and scalp. I do not study these veins and i do not think these veins are the first line of action, perhaps they take on a greater potential when the internal jugular cannot be opened or has clotted off.

[Mathd]

Hi DrS

from what you seen, what's the frequency of obstruction in the Illiac veins?
You realy surprised me when you balooned my illiac because I was thinking that will be higher! and is a valve was the problem with this vein too??

and what can cause valve problem? it is genetic?

[WeWillBeatMS]

Dr. Sclafani,

Are the external jugular veins also tested for CCSVI? I know that they have not proven to be a regular problem but what about for the people like myself who have lost hearing in one ear? And at times even my good ear rings and pops and feels plugged like my bad one does all of the time.

WeWillBeatMS

The external jugular drains the face and scalp. I do not study these veins and i do not think these veins are the first line of action, perhaps they take on a greater potential when the internal jugular cannot be opened or has clotted off.

OK. So which veins are responsible for draining the ears?

WeWillBeatMS