DrSclafani answers some questions

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

Postby pklittle » Sat Apr 16, 2011 1:46 pm

Dr. Sclafani,
Do you treat CCSVI in a hospital in New York? or only in the clinic?
thanks
Pam
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Postby civickiller » Sat Apr 16, 2011 7:56 pm

civickiller wrote:Dr. Sclafani,
I believe stenosis is caused from something(bone or muscle) putting pressure on the vein. Have you seen stenosis at one section of the vein but when you went back in a 2nd time, seen stenosis at a different position of the same vein? why is it that almost every MR scan ive seen shows either a pinched vein or looks like the vein is getting pressured to close, from only 1 side of the vein?

Thanks
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ASTEREOGNOSIS

Postby drsclafani » Sat Apr 16, 2011 9:53 pm

Every once in a while an dramatic change occurs instantaneously after CCSVI treatment. I dont see dramatic outcomes very often, usually improvements occur over several weeks.

This case illustrated immediate return of stereognosis within minutes of completion of three valvuloplasties.

50 year old man came with numbness in both hands, and in both legs. Typical fatigue, some balance issues were also present.

CCSVI ultrasound met multiple criteria for venography.

during preop testing of his neurological status, I noted that he was numb in both hands. Further testing demonstrated that he had difficulty identifying small objects placed in his hands while his eyes were closed.Further history revealed that he could not button his shirts unless he could see the button because he was unable to recognize by feel the button or the button hole.

This failure to recognize objects by touch is called Astereognosis.

His venogram showed stenoses of the area of the confluens of both Internal jugular veins that was shown by Intravascular ultrasound (IVUS) to be caused by inability of the valves to open properly. the valves had areas of thickening. He also had stenosis of the junction of the ascending azygous vein and the azygous arch. the images are shown below

Image
This RIJ Venogram (#1)has a typical tight stenosis at the valve area. (orange circles). There is also a narrow hypoplastic vein higher up (curved arrow) Image #2 shows no contrast media coming down in the internal jugular vein because the jugular vein is occluded by the catheter in the area of the rectangle. In figure 3, a collateral vein drains the contrast in the skull base veins. Note how narrow the dural sinus is (straight arrow). After angioplasty of the lower segment, the stenosis at the confluens is resolved.

I thought it best to leave the hypoplastic vein alone. I have not been impressed with treatment outcomes when managing hypoplasias. It is not uncommon for this to be ineffective.




Image
The left side also had a valvular stenosis (orange oval) In this case the upper portions of the IJV were of normal caliber and the dural sinus was intact. After 16x4 baloon angioplasty, the vein is now open and properly draining.



Image
This azygous venography is really illustrative of several points. Firstly, the frontal view (#1) looks normal. No stenosis. On the 70 degree view Fig #2,3), the posterior part of the azygous arch is beautifully seen and there is a significant stenosis. IVUS showed that this was caused by a valve that would not open. After balloon dilatation, the vein has a normal contour and improved flow characteristics on venography.

Immediately after the catheter was removed from the left saphenous vein, the patient remarked that he had improved sensation in his finger tips. In the recovery room I retested him for stereognosis. He was able to identify with his eyes closed several objects including coins, a paper clip and a penl.

Astereognosis is the inability to recognize objects by feel, generally by the hands or feet, or by the tongue. although recognition of the objects by sight may be intact. This patient could recognize the buttons on his shirt by vision but not by touch. He had great difficulty, for example, buttoning clothing above the second button because he could not see the button. When he had to rely upon his hands, he could not recognize the button or the button hole.

This case also emphasized the value of IVUS, Not only is it superior to venography in delineating the abnormality causing stenosis, but it gives superior imaging of the effects of angioplasty. In this particular case, the extent of the valvular stenosis within the azygous vein was much longer than venography indicated.

It is always startling to me, when patients have these dramatic and unexpected improvements. I find it difficult to imagine that this improvement could be psychosomatic and related to placebo effect.
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Postby drsclafani » Sat Apr 16, 2011 10:08 pm

CD wrote:
davmets2 wrote:Dr Sclafani,
I just had my 3 month ultrasound. My procedure was done in 2 stages, one week apart. While doing the second procedure for the RJV the venogram showed that the LJV that was done the week before with 18 mm balloon had restenosed and clotted. He attempted to re-balloon without any success. Had been on warifin since then (just stopped taking yesterday).
The ultrasound that I just had done yesterday showed flow in both jugulars. He couldn't tell me how much flow. He suggested another procedure with ballooning and probably a stent, but gave no guarantees that this would work or help. He told me to think about it, but the sooner I do it the better chances of success.
I guess my question would be, is there any test to show how much flow I'm getting and do you think that I should consider another procedure, possibly with a different Dr. such as yourself.
Thanks


Hi Dr. Sclafani,
I thought this was a good question. I, too, would be interested in your opinion on this question, whenever you have the time to answer. I know you are a very busy doctor.
Thanks,
CD


You are indeed fortunate that your thrombosis was able to reverse itself while on coumadin. Often, occlusion of the jugular vein is a permanent thing. You might not have had such an outcome if this vein had been the second vein treated rather than the first one.

I think that the ultrasound examination is the best screening test. Cheap, accurate and to the point.

Now you want to know how much flow there in within the vein? I would personally want to perform a venogramto assure that the vein interpreted as the IJ, actually was the IJV. Sometimes collateral vessels get quite large and may look very much like the internal jugular.

If the vein is narrowed significantly, I would try angioplasty with the expectation that a stent might be needed.

What possibly could be causing all the thromboses that we hear about. I wonder what percentage of patient treated develop IJ thrombosis.

I know that the cases of thrombosis that i have been involved with come in two forms.1. Overdilation of veins and very high pressures in relatively normal veins. Choosing vein diameter is much more precise using IVUS. I havent had a thrombosis since changing my procedure. The other association is with thrombosis resulting from treatment of hypoplastic veins. That is the reason that I have backed off aggressive treatment of hypoplasias..
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Postby drsclafani » Sat Apr 16, 2011 10:20 pm

pklittle wrote:Dr. Sclafani,
Do you treat CCSVI in a hospital in New York? or only in the clinic?
thanks
Pam


I have done about 100 cases at American Access Care in an ambulatory setting co-working with nephrologists/intensivists who perform interventions on renal dialysis fistulas and grafts for patients in chronic renal failure. One patient has required a two day admission for congestive heart failure. This is pretty satisfactory, considering I will treat patients despite high EDDS. I think admission to the hospital is really overutilizing the health care system for the most part. Come patients may need admission prior to the procedure, but these are rare.

Now to answer your question :D

I treat patients in an ambulatory setting. The requirements for me to perform this procedure in a hospital setting include 1. randomized double blind prospective trial with a sham arm 2. independent financing by grant . Things not possible in the short term.
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Postby bluesky63 » Sun Apr 17, 2011 5:13 am

That last post was at 1:20 a.m. The doctor that never sleeps!

I hope I say this right, but I was just reading your response to Lyme Nurse about how the MRV can be inaccurate. And I know my MRV was not accurate compared to my venogram. So if MRVs can be so off, what about MRIs? I know this isn't your field, but doctors rely so much on MRIs. And all MS patients (and the best MS doctors) know from experience that the MRI does not necessarily match the clinical picture. They treat the person, not the MRI.

So what makes anyone think that the MRIs are so accurate, given that the MRVs are not seeming to be that accurate? They may be a helpful window, but maybe it's a steamy window.

Just a thought. I don't think I really expect you to be able to give an answer but really, what would make an MRI accurate if an MRV isn't?

I hope you are rested now and enjoy a beautiful day. Thank you. :-)
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Postby vivavie » Sun Apr 17, 2011 6:43 am

drsclafani wrote:
vivavie wrote:If my stents are occluded what are my options, I am already on coumadin and plavix? I have a stent within stents within stents (3 layers), Is there anything more that can be done? should I even bother to get that US?


firstly, we must ask what was the intention behind the first intervention. Was it to eliminate some painful symptoms? to reverse some weakness or sensory mprove balance? to reverse fatigue ?
the ask whether that accomplished that. that is the first piece of the puzzle.

Secondly, if you had reversal of fortunte and symptoms returned, then was the original improvement of great value or a minor disappointing improvement.

Thirdly, what was the purpose of putting the first stent in? was it a regretful treatment plan or did it provide you with some worthwhile improvement

Fourthly, we know what the purpose of putting the last stents in. Did it provide what you were looking for.

After answering these questions, we can have a meaningful discussion of how much further to pursue this. Only you can answer these questions.

But, you are in pain, we do not know why. treatment, no treatment, i think it is important to understand what is going on because we cannot have a logical discussion with out knowing that.

drs

Firstly:
procedure april 2010 GOAL: relieve of pain, fatigue and hyperacousy. I have a multitude of other symptoms but they are not as debilitating, I can live with them.

In Poland the only thing done was stent at the LIJ valve - angio 3X would not stay open.
Improvements during 6 weeks: walking, bladder, bowels, saliva, swallowing, speech, headache, warm hands/feet, sweating, skin. Probably fatigue because I visited Poland for 10days - difficult to assess.

For a year now i have NO problem walking - before I could not go see a movie or ride in a car - my legs would get stiff and not move. no more limp too. But I would rather have less pain...

Second: the reversal is a Major dissapointement, 6 weeks of better life gave me hope for the futur!
I have MORE pain and fatigue, spend most of my time in bed, much less pain supine.

Third: I was nb 25 - they should not have put the stent but break down the valve. I don't think they knew better then and I certainly did not!!!

fourth: putting more stents was to prevent hyperplasia and keep the blood flowing.
I looks like there is already more hyperplasia in 2 months!!
I had a US showing little flow but no blood clot.

Question: why hyperplasia translate in soreness and swelling of the jug? It happens every time.

I do not want to have my jug shut down entirely:
1- we don't know the futur in CCSVI,
2- what happen if the rij restenosed,
3- when the vein collapsed I went thru HELL, I was declining fast. I don't think RJ and Azygos are enough for me.

You pm me about dicussing my case on TIM, please do. I may learn more and I can't open my procedure cd to see the images.

thank you for caring
nb: I wish I was better at using the quotes to answer under each of your points. did my best...
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Postby drsclafani » Sun Apr 17, 2011 9:52 am

bluesky63 wrote:That last post was at 1:20 a.m. The doctor that never sleeps!

I hope I say this right, but I was just reading your response to Lyme Nurse about how the MRV can be inaccurate. And I know my MRV was not accurate compared to my venogram. So if MRVs can be so off, what about MRIs? I know this isn't your field, but doctors rely so much on MRIs. And all MS patients (and the best MS doctors) know from experience that the MRI does not necessarily match the clinical picture. They treat the person, not the MRI.

So what makes anyone think that the MRIs are so accurate, given that the MRVs are not seeming to be that accurate? They may be a helpful window, but maybe it's a steamy window.

Just a thought. I don't think I really expect you to be able to give an answer but really, what would make an MRI accurate if an MRV isn't?

I hope you are rested now and enjoy a beautiful day. Thank you. :-)


So if an ant is small, should Aunt Bertha be a diminutive 325 pounds?

MRV imaging is fraught with issues related to representations of flow over time. While an MRI is not. I fee like the MRI has been well tested and is generally reliable of inflammation.
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Postby drsclafani » Sun Apr 17, 2011 9:59 am

vivavie wrote:
drsclafani wrote:
vivavie wrote:If my stents are occluded what are my options, I am already on coumadin and plavix? I have a stent within stents within stents (3 layers), Is there anything more that can be done? should I even bother to get that US?


firstly, we must ask what was the intention behind the first intervention. Was it to eliminate some painful symptoms? to reverse some weakness or sensory mprove balance? to reverse fatigue ?
the ask whether that accomplished that. that is the first piece of the puzzle.

Secondly, if you had reversal of fortunte and symptoms returned, then was the original improvement of great value or a minor disappointing improvement.

Thirdly, what was the purpose of putting the first stent in? was it a regretful treatment plan or did it provide you with some worthwhile improvement

Fourthly, we know what the purpose of putting the last stents in. Did it provide what you were looking for.

After answering these questions, we can have a meaningful discussion of how much further to pursue this. Only you can answer these questions.

But, you are in pain, we do not know why. treatment, no treatment, i think it is important to understand what is going on because we cannot have a logical discussion with out knowing that.

drs

Firstly:
procedure april 2010 GOAL: relieve of pain, fatigue and hyperacousy. I have a multitude of other symptoms but they are not as debilitating, I can live with them.

In Poland the only thing done was stent at the LIJ valve - angio 3X would not stay open.
Improvements during 6 weeks: walking, bladder, bowels, saliva, swallowing, speech, headache, warm hands/feet, sweating, skin. Probably fatigue because I visited Poland for 10days - difficult to assess.

For a year now i have NO problem walking - before I could not go see a movie or ride in a car - my legs would get stiff and not move. no more limp too. But I would rather have less pain...

Second: the reversal is a Major dissapointement, 6 weeks of better life gave me hope for the futur!
I have MORE pain and fatigue, spend most of my time in bed, much less pain supine.

Third: I was nb 25 - they should not have put the stent but break down the valve. I don't think they knew better then and I certainly did not!!!

fourth: putting more stents was to prevent hyperplasia and keep the blood flowing.
I looks like there is already more hyperplasia in 2 months!!
I had a US showing little flow but no blood clot.

Question: why hyperplasia translate in soreness and swelling of the jug? It happens every time.

I do not want to have my jug shut down entirely:
1- we don't know the futur in CCSVI,
2- what happen if the rij restenosed,
3- when the vein collapsed I went thru HELL, I was declining fast. I don't think RJ and Azygos are enough for me.

You pm me about dicussing my case on TIM, please do. I may learn more and I can't open my procedure cd to see the images.

thank you for caring
nb: I wish I was better at using the quotes to answer under each of your points. did my best...


But did you feel ANY better after I opened the intimal hyperplastic narrowing that you asked me to try. That was when you might have had some relief from increased blood flow. Did you?

Why do you react so badly to stents. Some people just do. I wish i could predict better. Some people just form exhuberant scar tissue.

i guess the only other consideration if the intimal hyperplasia does not subside might be to put in a covered stent to prevent the intimal hyperplasia from growing through the stent wires. But if opening the stents didnt help by providing short term increased blood flow, i am not sure what we would be accomplishing.
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Postby Cece » Sun Apr 17, 2011 10:18 am

Immediately after the catheter was removed from the left saphenous vein, the patient remarked that he had improved sensation in his finger tips. In the recovery room I retested him for stereognosis. He was able to identify with his eyes closed several objects including coins, a paper clip and a penl.

amazing....
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Postby vivavie » Sun Apr 17, 2011 10:59 am

drsclafani wrote:But did you feel ANY better after I opened the intimal hyperplastic narrowing that you asked me to try. That was when you might have had some relief from increased blood flow. Did you?

Why do you react so badly to stents. Some people just do. I wish i could predict better. Some people just form exhuberant scar tissue.

i guess the only other consideration if the intimal hyperplasia does not subside might be to put in a covered stent to prevent the intimal hyperplasia from growing through the stent wires. But if opening the stents didnt help by providing short term increased blood flow, i am not sure what we would be accomplishing.


Not for pain but for energy I was hopeful because just after i returned from NY we had a major fundraising event, with less manpower than we normally have. I had to do a lot of physical work for 10 days. Normally after such event I am shaking all over, can't stand myself or others and it takes me weeks to get over it. This time I was tired but not over the board. I was hopeful and thought with time and exercise I would improve but then I started to go downhill again...

Before I had chemo I was having 4-6 relapses/year, I have too many lesions to be able to count so I was not expecting to get better in a week.
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American Access Care - Chicago

Postby cowboystew » Mon Apr 18, 2011 8:41 am

Hi Dr. S,
Do you share information with the IR at American Access Care in Chicago? I'm going there for treatment May 10 - 11. This will be round 2 for me, and I'm hoping for results that last longer than my first time (17 days). Can you tell me anything about this doctor? Does he keep up with new discoveries? I was the first CCSVI patient of my South Bend doctor. I'm getting nervous, and I need to feel like I'm in good, experienced hands. ~Nancy
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Re: American Access Care - Chicago

Postby drsclafani » Mon Apr 18, 2011 2:51 pm

cowboystew wrote:Hi Dr. S,
Do you share information with the IR at American Access Care in Chicago? I'm going there for treatment May 10 - 11. This will be round 2 for me, and I'm hoping for results that last longer than my first time (17 days). Can you tell me anything about this doctor? Does he keep up with new discoveries? I was the first CCSVI patient of my South Bend doctor. I'm getting nervous, and I need to feel like I'm in good, experienced hands. ~Nancy


Dr Makris is a well trained, former academic interventional radiologist, who has chosen to go into private practice at american access. His practice is practically 100% venous disease. Although he is relatively new to CCSVI treatment, he has done thousands of venous angioplasties. He has a very busy practice and cannot devote more time to ccsvi at the moment until he recruits and hires a partner.

He and I have discussed ccsvi treatment. I have given him lectures on the topic. He participated in the ISNVD meeting run by dr zamboni last month.

He is an honest, caring doctor. I trust his judgment and his values. If he needs advice, i am always there for him.

DrS
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Postby Cece » Tue Apr 19, 2011 6:40 am

drsclafani wrote:Image
This azygous venography is really illustrative of several points. Firstly, the frontal view (#1) looks normal. No stenosis. On the 70 degree view Fig #2,3), the posterior part of the azygous arch is beautifully seen and there is a significant stenosis.

Outside of your practice, is it common or uncommon for ccsvi IRs to image the azygos in different angles like this?
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Postby vivavie » Tue Apr 19, 2011 7:00 am

drsclafani wrote:... Some people just form exhuberant scar tissue.

i guess the only other consideration if the intimal hyperplasia does not subside might be to put in a covered stent to prevent the intimal hyperplasia from growing through the stent wires...


My patern has been to develop hyperplasia within 6-8 weeks each time. You choose to installed 2 layers of mesh stents inside my actual stents over ONE covered stent. Why? there must be some disadvantages to the covered stents.
Is there enough room to insert a covered stent? that would make it 4 layers?

I ask my question here for the benefit of other patients with similar problem.
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