This Is MS Multiple Sclerosis Knowledge & Support Community

Cece wrote:

drsclafani wrote:in all the cases that i treat, i repeat the ivus after angioplasty. I look for residual defects, immobile valve fragments, thrombus, but i have never measured the cross sectional area of the vein before and after angioplasty. It seems so obvious that i should have, but i didnt. Something else to look at

That does seem logical... but the measurements right after the ballooning are going to be larger than the measurements a month later, because the balloon is around 10% larger than the vein wall, so there is some immediate overstretch that won't last?

I think that stretch can persist for a very long time. One of the reasons to measure the vein is to learn what happens over time....so obvious, yet overlooked. Something new to learn all the time

Dr. Sclafani, have you noticed any correlation between the degree of occlusion at the IJV valve level and the severity of the stenoses? Also, have you observed the double stenosis pattern in the IJVs that Dr. Trevor Tucker attributes to low pressure nodes in accordance with fluid dynamics? Thanks doctor.

dlynn wrote:Dr. Sclafani,
Are you seeing "Renal Vein Compression Syndrome" in any of your MS/CCSVI patients?
If so are you treating with stents and what is the outcome?
thank you

I have been studying the renal vein compression syndrome for about two years. I have performed venography and IVUS on all patients for almost one year.

The findings on venography are sometimes subtle, manifested by either reflux into the ascending lumbar vein, the ovarian/testicular vein, and/or the azygorenal vein, and by decreased radio-opacity of the contrast column in the area where the aorta should be.

Renal vein compressive occlusion is quite common in humans: about 25% . If symptoms are present, then it is called the nutcracker syndrome. If there no symptoms then it is called the nutcracker phenomenon. The symptoms of nutcracker syndrome include fatigue, imbalance, pelvic pain, rectal pain, hematuria, proteinuria, hypertension, pelvic variose veins, pain in the area of the ovaries, varicoceles of the testes and perianal hemorrhoids and varicosities in the upper thigh, or external genitalia. Because most patients with MS have fatigue and ccsvi, and because 2/3 of the major collateral veins take the very high renal vein flow, i generally treat patients with nutcracker syndrome in PwMS.

Because this is a compression syndrome, simple angioplasty will not be effective. I perform stenting of the renal vein in all cases.

Many of the patients i have treated have had significant improvements, although others have had no response. It is definitely impossible in most cases to separate the effects of jugular/asygous venoplasty from the effects of treatment of the nutcracker occlusions. However I have had a few patients who did not have any treatment other than the nutcracker and had resolution in the symptoms.

In keeping with the FDA warning, I should add that stenting the renal vein is an "off-label use of a stent. Complications are uncommon, but should also be mentioned: migration is a known risk, occlusions are uncommon, with patency at 3 years as high as 95%.

DrS

AnCap wrote:Dr. Sclafani, have you noticed any correlation between the degree of occlusion at the IJV valve level and the severity of the stenoses? Also, have you observed the double stenosis pattern in the IJVs that Dr. Trevor Tucker attributes to low pressure nodes in accordance with fluid dynamics? Thanks doctor.

i would consider the degree of occlusion to be the same as the severity of the stenosis.

I do not see a "double" stenosis pattern in most patients.

drsclafani wrote:

dlynn wrote: Dr. Sclafani,
Are you seeing "Renal Vein Compression Syndrome" in any of your MS/CCSVI patients?
If so are you treating with stents and what is the outcome?
thank you

I have been studying the renal vein compression syndrome for about two years. I have performed venography and IVUS on all patients for almost one year.

The findings on venography are sometimes subtle, manifested by either reflux into the ascending lumbar vein, the ovarian/testicular vein, and/or the azygorenal vein, and by decreased radio-opacity of the contrast column in the area where the aorta should be.

Renal vein compressive occlusion is quite common in humans: about 25% . If symptoms are present, then it is called the nutcracker syndrome. If there no symptoms then it is called the nutcracker phenomenon. The symptoms of nutcracker syndrome include fatigue, imbalance, pelvic pain, rectal pain, hematuria, proteinuria, hypertension, pelvic variose veins, pain in the area of the ovaries, varicoceles of the testes and perianal hemorrhoids and varicosities in the upper thigh, or external genitalia. Because most patients with MS have fatigue and ccsvi, and because 2/3 of the major collateral veins take the very high renal vein flow, i generally treat patients with nutcracker syndrome in PwMS.

Because this is a compression syndrome, simple angioplasty will not be effective. I perform stenting of the renal vein in all cases.

Many of the patients i have treated have had significant improvements, although others have had no response. It is definitely impossible in most cases to separate the effects of jugular/asygous venoplasty from the effects of treatment of the nutcracker occlusions. However I have had a few patients who did not have any treatment other than the nutcracker and had resolution in the symptoms.

In keeping with the FDA warning, I should add that stenting the renal vein is an "off-label use of a stent. Complications are uncommon, but should also be mentioned: migration is a known risk, occlusions are uncommon, with patency at 3 years as high as 95%.

DrS

Dr. Sclafani,
Thank you for taking the time to respond to my post. I have a big decision to make, but have a few more questions to ask you first.

1) Does Nutcracker Syndrome have the same consequences as I.J.V. Stenosis, such as iron deposits and demyelination?
2) Is achy, heavy legs a symptom- or could it be?
3) Have you treated non-MS patients, if so what was their outcome?
4) If a stent migrates, how would I know and how would it be treated?
5) Would I need to be on a blood thinner for life?

Thank you for all you do for the MS community!
-Dlynn

dlynn wrote:

drsclafani wrote:

dlynn wrote: Dr. Sclafani,
Are you seeing "Renal Vein Compression Syndrome" in any of your MS/CCSVI patients?
If so are you treating with stents and what is the outcome?
thank you

I have been studying the renal vein compression syndrome for about two years. I have performed venography and IVUS on all patients for almost one year.

The findings on venography are sometimes subtle, manifested by either reflux into the ascending lumbar vein, the ovarian/testicular vein, and/or the azygorenal vein, and by decreased radio-opacity of the contrast column in the area where the aorta should be.

Renal vein compressive occlusion is quite common in humans: about 25% . If symptoms are present, then it is called the nutcracker syndrome. If there no symptoms then it is called the nutcracker phenomenon. The symptoms of nutcracker syndrome include fatigue, imbalance, pelvic pain, rectal pain, hematuria, proteinuria, hypertension, pelvic variose veins, pain in the area of the ovaries, varicoceles of the testes and perianal hemorrhoids and varicosities in the upper thigh, or external genitalia. Because most patients with MS have fatigue and ccsvi, and because 2/3 of the major collateral veins take the very high renal vein flow, i generally treat patients with nutcracker syndrome in PwMS.

Because this is a compression syndrome, simple angioplasty will not be effective. I perform stenting of the renal vein in all cases.

Many of the patients i have treated have had significant improvements, although others have had no response. It is definitely impossible in most cases to separate the effects of jugular/asygous venoplasty from the effects of treatment of the nutcracker occlusions. However I have had a few patients who did not have any treatment other than the nutcracker and had resolution in the symptoms.

In keeping with the FDA warning, I should add that stenting the renal vein is an "off-label use of a stent. Complications are uncommon, but should also be mentioned: migration is a known risk, occlusions are uncommon, with patency at 3 years as high as 95%.

DrS

Dr. Sclafani,
Thank you for taking the time to respond to my post. I have a big decision to make, but have a few more questions to ask you first.

1) Does Nutcracker Syndrome have the same consequences as I.J.V. Stenosis, such as iron deposits and demyelination?

All of this is theory. The nutcracker syndrome may result in increased flow into the vertebral plexus and lead to spinal lesions or worsen the venous congestion of the crebrospinal circulation

2) Is achy, heavy legs a symptom- or could it be?

this can be a symptom. Other symptoms include hypertension, pelvic pain, imbalance, proteinuria and hematuria and chronic fatigue

3) Have you treated non-MS patients, if so what was their outcome?

clinical improvements

4) If a stent migrates, how would I know and how would it be treated?

that depends upon where it migrates. treatment could require surgery, if it goes into the heart it m ght cause an irregular heart rate and require extraction

5) Would I need to be on a blood thinner for life?

Probably not. the high flow rate in the renal vein likely does not require anticoagulation for very long. The reported three year patency rate is greater 95% in the peer review journals

Thank you for all you do for the MS community!
-Dlynn

it gives meaning to my life

Thank you again Dr. Sclafani, and God bless!!
dlynn

Hi all, and I apologize if this has been talked about earlier in the thread... but it's difficult to search through even with AlmostClever's index thread... but does anyone know what the average costs of testing/procedures done at Dr Sclafani are when you don't have insurance?

I was treated by Dr. Mehta in Albany in January 2011 for a jugular vein and azygous vein but my jugular had blocked up by the time of my checkup 3 months later and I've been thinking I might visit Dr. Sclafani as he seems really knowledge and helpful here in the forums...

daniel wrote: but it's difficult to search through even with AlmostClever's index thread... but does anyone know what the average costs of testing/procedures done at Dr Sclafani are when you don't have insurance?

Hi, I was treated by Dr S. I live in Australia, and have no insurance. You can email him (if he has yet to contact you), and he is more than ready to openly discuss the full costs. I think his email address is in his profile.

daniel wrote: ... but does anyone know what the average costs of testing/procedures done at Dr Sclafani are when you don't have insurance?

The price Jun 2011 for self financing people was 10k USD, which I paid. Does not include travel nor hotel costs. I strongly recommend that you do not fly for 20 days after de-stenosis, even with anti-coagulants and anti-platelets. My reasoning is that some people get DVT, thrombosis etc without warning by flying, so reduce your risk by not flying. Is there a train between NYC and Toronto ?
I recommend DrS and travelled from Oxford England to find the leading global plumber (plumber is his description).
MarkW

MarkW wrote: Is there a train between NYC and Toronto ?

Yes i think so.

NY is also an easy 8 hour drive from Toronto (which is the way we did it - to avoid flying as long as we could)

We waited about a week and then flew back to Europe. I think Dr S was recommending not flying for 2-3 days, we waited a bit longer and visited family. I had no problems beyond the usual airline frustrations.

I hope this info is useful..............MarkW

drsclafani wrote: Mark
the current price is $7ooo for venography and angioplasty, $2000 for ivus. $2000 per stent, highly recommend ivus first time. Try to use old ivus for subsequent treatments. Price has a 90 day inclusion period for retreatment. Additional treatments after 90 days are 5000 plus stents
I have no data to support a 20 day wait before air travel

MarkW wrote:Hello DrS,
Thanks for the update on prices. There is no data on not flying for 20 days but as the patient is taking anti-coagulants for around 20 days this seems a reasonable risk reduction thought to me. I could not find published data on why any duration of anticoagulation was chosen by the drug manufacturers. I hoped this could give clues but sadly not.
My MS appears stable, the main benefits of your op are that I now sweat and my hyper-tone is reduced further than after Athens. I guess that the Oxford neuros will begin to take notice 5 years after my first de-stenosis, 3 years to go!
Hope you still get lots of people for your clinic.
Best wishes,
Mark

My recommendation for not flying for 20 days after de-stenosis is about managing risk. Anti-coagulation after an operation seems to have been recommended by the drug manufacturers because it worked, not as a result of detailed studies! Also when I reviewed ThisIsMS I saw that many of the problems people faced with re-stenosis and thrombosis occurred after long flights (Poland to Canada, Mexico to Canada). Add to this the incidence of DVT (deep vein thrombosis) in healthy young people and I advise to reduce risk after de-stenosis. Not evidence but a risk reduction approach. I also recommend that IVUS is used for finding stenoses and balloon sizing. Evidence is mounting but again it reduces risk.
MarkW

Daniel, good luck and best wishes! I had my best results after my second procedure.

A possible reason for quick restenosis is if you were undertreated. If your veins restenose quickly again, you'd be able to get the repeat procedure at no extra cost within the first ninety days, but you'd have to be able to get back to Brooklyn to do it.

drsclafani wrote:I think that stretch can persist for a very long time. One of the reasons to measure the vein is to learn what happens over time....so obvious, yet overlooked. Something new to learn all the time

People only see what they are prepared to see.

Do the immediate post-ballooning CSA measurements show the vein itself to be larger than initially measured? If the vein was 150 mm2 with a 10 mm2 opening between fixed valves, does it remain a 150 mm2 vein or does it get larger? How close to the full size of the vein does the opening become? If there is residual stenosis, would you expect that to end up being predictive of a greater likelihood of restenosis?

I think this has potential to be the next case study....it has been days or weeks or months since we've had one, hasn't it? Or maybe something even more interesting has come along. Or maybe all CCSVI cases are interesting....