DrSclafani answers some questions

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

Postby Johnson » Sat Jun 04, 2011 2:10 am

drsclafani wrote:
PCakes wrote:
drsclafani wrote:Let me say it again... ...

THE ONLY BAD QUESTION IS ONE THAT IS NEVER ASKED


Okay, here goes.. Dr Sclafani do you think that thyroid issues, very common in MS, might be tied to CCSVI?

My oldest sister, not diagnosed with MS but with many many connective tissue disease issues, called today to tell me that she has tested positive for both Graves and Hashimoto's. Hypo and hyper thyroid? She is being told the only way to deal with this would be to pharmaceutically 'kill' the thyroid. I am very worried for her.

Thank you,
pc


Both hashimotos disease and graves disease occur with higher frequency in patients with MS. The explanation has been that autoimmune disease cluster and both hashimotos and graves are autoimmune and this fits nicely with an autoimmune explanation of ms.

however just as collateral circulation is suggested as a cause of inflammation in the brain, there are those who suggest that the collateral circulation of ccsvi going through the thyroid gland could cause these inflammatory thyroid diseases, sort of a chronic thyroid venous insufficiency.

I certainly see considerable collaterals in venous obstruction that run through the thyroid gland.

Food for thought, but unresolved opinions.


Thyroid issues are one of my pet ponies...

Might we consider atrophy of the thyroid - leading to thyroid disorders - as is seen in the brain parynchema? But would that not cause hypothyroidism and weight gain - as opposed to the weight loss observed in many Pw"MS" (myself included)? Perhaps the weight loss is more loss of muscle mass due to being sedentary. It is confounding.

This is a pic from my venogram in Vrooklyn showing collaterals in the thyroid area (these were observed and remarked upon in March 2010 DUS before two PTAs overseas). I have made a rough representation of the thyroid in a kind of mustard colour,
Image
My name is not really Johnson. MSed up since 1993
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Postby Cece » Sat Jun 04, 2011 9:03 am

drsclafani wrote:I have been looking at these IVUS for a long time. When i first saw those bright dots and blotches, i wondered whether they were real. I am now convinced that I can see webs. before i wasnt sure and i left them alone. Now i am considering angioplasty of the webs

You are considering angioplasty of the webs, have you tried it yet? Any results?

Fridays and Saturdays are treatment days in Brooklyn....all the best to the patients and the doctor!!

great pic, Johnson...you mentioned weight gain as a possible thyroid symptom? Does it seem better/different post-procedure, assuming that jugular was able to be unblocked?
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Postby Cece » Sat Jun 04, 2011 5:40 pm

drsclafani wrote:
Cece wrote:
drsclafani wrote:Image
Selective catheterization and venography of the left sigmoid sinus showed that unlike the right side extensive collateral veins were noted in the back of the neck (orange) Also noted were filling defects, consistent with thrombus, in the sinuses. Frontal venogram of the L IJV showed narrowing in J2 (red arrows) similar to the right side. Again, upon rotation of the neck, flow was improved and diameter was normal.

Will there be any treatment for the patient's sinus thrombosis?

i think that this was old clot. i didnt think that it would respond to thrombolytic agents. a mechanical thrombectomy device might have been helpful but i did not think it would go through the jugular bulb and canal. So the best i could do was flush the clots, hopefully down the other sigmoid sinus which was already opened and the jugular had great flow on that side. some of the clot came down the left and some of that got hung up in J3. A large bore open mouthed catheter was used to suck out the clot. the tissue was very hard and firm suggesting that it was an old clot. Perhaps it was a residual of the prior ccsvi procedure

I am still wondering about this sinus thrombosis.
Now that you are including exploration of the sigmoid sinuses as a part of your procedure, are you finding more sinus abnormalities than you had expected?
Would these sinus thrombi be related to the CCSVI (if the slow flow or turbulence created an environment where clotting is more likely to occur) or do you think it is unrelated?

Any interesting cases this week? This last one had just about everything....
Last edited by Cece on Tue Jun 07, 2011 7:04 pm, edited 1 time in total.
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Postby HappyPoet » Sun Jun 05, 2011 8:56 am

drsclafani wrote:i think that this was old clot. i didnt think that it would respond to thrombolytic agents. a mechanical thrombectomy device might have been helpful but i did not think it would go through the jugular bulb and canal. So the best i could do was flush the clots, hopefully down the other sigmoid sinus which was already opened and the jugular had great flow on that side. some of the clot came down the left and some of that got hung up in J3. A large bore open mouthed catheter was used to suck out the clot. the tissue was very hard and firm suggesting that it was an old clot. Perhaps it was a residual of the prior ccsvi procedure

Did this patient have problems with clotting in their prior procedure(s) or history that lead you to think this?

I feel I must again THANK YOU for your post-procedure anticoagulation protocol of using Arixtra and aspirin which dissolved the large clot that completely occluded my femoral vein (previous procedure with different doctor) which I believe saved my leg and my life.

I know venography, MRV and CT scans can show dural sinus thrombosis -- I'm wondering if a transcranial Doppler US can also show dural sinus thrombosis? Do you think patients with a history of clotting should be routinely screened for dural sinus thrombosis? Which imaging modality do you believe is best for this purpose?

The cases you present are extremely helpful to patients, but I believe they are also extremely helpful to doctors, too! Just think of how many people you're reaching -- THOUSANDS! Dr. Sclafani, THANK YOU for your dedication and for setting the standard against which all other IRs are measured.

:D
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Postby drsclafani » Sun Jun 05, 2011 10:49 pm

Nunzio wrote:
drsclafani wrote:I sometimes find the left renal vein catheterization very difficult. the vein has a very wide mouth and the vector of pushing the catheter makes it difficult to keep the catheter into the vein
I have not spent a lot of time getting into the vessel and have been too quick to stop.

I cannot agree with galeotti on this. I h ave done over 1000 inferior vena cava filters. In preparation for placing the filter, i have catheterized about 1000 renal veins and rarely seen this entity. Perhaps it is an association with ccsvi.

You might be right and there might be an association with renal vein problems and CCSVI. Dr. Galeotti mentioned 4.6% as the percentage of patients in his group with renal vein problems.
He also mentioned 86% of patients with Azygous problems which is more that I have seen mentioned by other groups.

Image
Now a question:
It seems to me that if the right Renal Vein is occluded the collaterals would still drain into the Azygous vein.
Do you check the right Renal Vein too?
Thanks a lot


i dont remember whether i responded to this question.
Nunzio, i think that the left side is important because all of the anomalies that might cause obstruction of the renal vefin seem to be located on the left side, circumaortic renal collar, retraaortic renal vein, Nutcracker syndrome of left renal vein getting pinched between the superior mesenteric artery and the aorta.

S,
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Postby drsclafani » Sun Jun 05, 2011 10:55 pm

Cece wrote:
drsclafani wrote:I have been looking at these IVUS for a long time. When i first saw those bright dots and blotches, i wondered whether they were real. I am now convinced that I can see webs. before i wasnt sure and i left them alone. Now i am considering angioplasty of the webs

You are considering angioplasty of the webs, have you tried it yet? Any results?

i have tried it on that renal vein compression. webs were there.
I have also done it in the azygous vein. post angioplasty ivus did not show the webs . too soon on outcomes.

Fridays and Saturdays are treatment days in Brooklyn....all the best to the patients and the doctor!!

I schedule three patients for friday and two for saturday. Two of the five patients cancelled at the last moment. very frustrating

It seems that the majority of my patients have been treated elsewhere already. Also very frustrating
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Postby munchkin » Mon Jun 06, 2011 4:36 am

Dr.Sclafani

Are you finding re-treatments to be more effective with IVUS? Because of the re-treatments are you finding your procedures are taking longer and are more difficult because of scarring? Do these patients seem to require stents?

Thanks for all of your time answering these questions and for helping many of us maneuver this life altering treatment.
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Postby Cece » Mon Jun 06, 2011 3:37 pm

drsclafani wrote:I schedule three patients for friday and two for saturday. Two of the five patients cancelled at the last moment. very frustrating

It seems that the majority of my patients have been treated elsewhere already. Also very frustrating

I had a pm from someone thinking you do not like to do reinterventions, but in and of itself, this is not true, it is just the complications from earlier procedures that are the trouble? Stents and damaged veins, etc?

It is too bad about the cancellations. Dr. Siskin complained about this last summer, it is not unique to Brooklyn....
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Postby Thekla » Tue Jun 07, 2011 7:21 am

cancellations are also very frustrating to those waiting for a slot.

Why are the reinverventions tougher? I thought dialysis patients were scheduled for regular retreatment, why is it a different ballgame for ccsvi?

Also, is there starting to be any agreement on aftercare, heparin, plavix, lovenox, arixtra, aspirin for x days or not at all. Last year it seemed that opinions and prescribed care varied widely?
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case of the week

Postby drsclafani » Tue Jun 07, 2011 10:25 am

We have previously spoken about the scenario of this week's case of the week: A procedure totally done using IVUS for diagnosis and intervention. Venography was not performed.
The patient is a 53 year old female who has symptoms resembling MS, including severe confusion, difficulties in multi-tasking, with severe short term memory loss and profound fatigue. She also has weakness without spasticity, incoordination and lack of balance. Her doctors have yet to give her a diagnosis of MS despite evidence of demyelination and progressive deterioration.

The patient and her husband traveled to Bangalore, India in 2010 to have venography and venoplasty. During that visit external Doppler ultrasound of the neck vessels was performed. It was said to show CCSVI; however the examination was done looking at velocities and flow and used the Valsalva maneuver. It showed reflux.

Venography was then attempted. The procedure was begun by right femoral access. The patient states that she recalls that one of the vessels was catheterized and that she heard the doctors note that there was a stenosis. However, she does not know which vessel was referenced. The next few minutes became unclear to the patient and she developed anaphylactic shock requiring resuscitation. Resuscitation was successful but the procedure was terminated. The patient returned to Canada, alive, knowing that there was some stenosis but untreated.

She and her husband persisted., seeking a way to undergo another attempt, but obviously unable to have standard venography or venographic guidance to treatment. They tried MR venography. There is no cross reactivity between venographic dye and MR dye. They are separate, different compounds with nothing in common. There is no association of allergic reactions between the two. Nonetheless she had an allergic reaction. They were investigating the use of carbon dioxide gas as a contrast agent, something researched extensively by Irwin Hawkins and Jim Caridi in Florida.

At the same time, i reached out to patients who had not been given followup to their inquiries back in the days when i started treatment at American Access. I emailed many patients expressing my regret that timely follow-up had not been done and to inform them that things had finally been ironed out. And that is how I became involved in this patient.

I told her that I would be willing to attempt the procedure without the use of any dyes and use fluoroscopy and IVUS for guidance, diagnosis and treatment. Fluoroscopy would give me landmarks. The bones visible on fluoroscopy would enable me to know where the trouble was. Finding the trouble would require the use of IVUS to show me stenoses and valvular abnormalities.

Catheterization began from the left saphenous vein just before it entered the femoral vein. The sheath was placed in the superior vena cava thus avoiding any further instrument placement through the heart. At this time i then administered intravenously benadryl, an antihistamine which promptly caused the heart rate to rise to greater than 160 beats/minute. This was treated and the pulse returned to 80 ppm. Blood sugar had dropped to 53 so 50% dextrose was given. Finally things returned to her steady state and we resumed the procedure.

Selective catheterization of the right internal jugular vein was performed first. I knew i was in the jugular vein because of the guidewire went into the dural sinuses. I exchanged the catheter for the IVUS device which i advanced into the dural sinus. I created IVUS images as i pulled the device through the dural sinus, the bony jugular bulb and finally through the jugular vein into the inominate vein. See the twelve IVUS images that make up the right jugular vein.

Image
and
Image[/img]

I will be back later to answer some questions and to review this part of a very interesting case.
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Postby drsclafani » Tue Jun 07, 2011 10:33 am

Thekla wrote:cancellations are also very frustrating to those waiting for a slot.

a major reason for my frustration. Such slots could better be used by patients who dont cancel at last moment. I can understand patients changing their minds, but if they didnt wait until the last minute, someone else who is frustrated waiting could have a procedure. But i wonder what the wait is. I have open slots every week now. If someone is not getting a date, please email me at ccsviliberation@gmail.com.

Why are the reinverventions tougher? I thought dialysis patients were scheduled for regular retreatment, why is it a different ballgame for ccsvi?

many reinterventions are for occlusions. These are not easy to recanalize, unlike dialysis grafts which are easier and do not require a full femoral catheterization, plus a jugular puncture into an occlusion and a rendevous procedure. But the most frustrating thing are the errors that i see: balloons too small, too large, too low pressure, no anticoagulation, unnecessary stents, etc.

Also, is there starting to be any agreement on aftercare, heparin, plavix, lovenox, arixtra, aspirin for x days or not at all. Last year it seemed that opinions and prescribed care varied widely?


still varies greatly. For the last 18 months i have worked at standarizing MY OWN practices. Still not there but i am closer each week to a standard, although I keep augmenting rather than changing now.
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Postby drsclafani » Tue Jun 07, 2011 10:36 am

Cece wrote:
drsclafani wrote:I schedule three patients for friday and two for saturday. Two of the five patients cancelled at the last moment. very frustrating

It seems that the majority of my patients have been treated elsewhere already. Also very frustrating

I had a pm from someone thinking you do not like to do reinterventions, but in and of itself, this is not true, it is just the complications from earlier procedures that are the trouble? Stents and damaged veins, etc?


absolutely. frustration does not mean i dont love to care for all of these problems. I love doing this!

Sometimes i just wish i had had an opportunity to treat in the first place. I am certainly not saying that i havent had my own complications and failures, but it is frustrating to clean up after someone else

but no, i have never turned down a patient or expressed unwillingness to treat someone who has been treated elsewhere.
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CCSVI Aftercare aspirin

Postby fraser » Tue Jun 07, 2011 11:10 am

Hi!

Just wondering if you think it's absolutely 100% necessary to take low dose aspirin after the Liberation Procedure? My husband has been on it for a year, since the procedure, but starting to wondering if it's interfering with his sleep. Things have been good since the procedure, and his symptoms have improved, but the broken sleep is causing havoc. He wakes in the middle of the night, unable to get back to sleep. He is on prescription sleep medication which is causing longterm problems...and still waking in the night. He can hardly function at work most days.

I know he'd be in fantastic shape if only he could sleep.

Would going off the aspirin be a dangerous move?

Also I've read reports that taking longterm aspiring may lead to pancreatic cancer. It was once believed that it could prevent this type
of cancer - what is your take on this?

Thanks!
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CCSVI Aftercare aspirin

Postby fraser » Tue Jun 07, 2011 11:11 am

Hi!

Just wondering if you think it's absolutely 100% necessary to take low dose aspirin after the Liberation Procedure? My husband has been on it for a year, since the procedure, but starting to wondering if it's interfering with his sleep. Things have been good since the procedure, and his symptoms have improved, but the broken sleep is causing havoc. He wakes in the middle of the night, unable to get back to sleep. He is on prescription sleep medication which is causing longterm problems...and still waking in the night. He can hardly function at work most days.

I know he'd be in fantastic shape if only he could sleep.

Would going off the aspirin be a dangerous move?

Also I've read reports that taking longterm aspiring may lead to pancreatic cancer. It was once believed that it could prevent this type
of cancer - what is your take on this?

Thanks!
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Re: case of the week

Postby Cece » Tue Jun 07, 2011 12:02 pm

drsclafani wrote:We have previously spoken about the scenario of this week's case of the week: A procedure totally done using IVUS for diagnosis and intervention.

wow!
Yes, I remember discussing this, and in the very same situation, regarding a patient who had reaction to the contrast dye. Back then you thought it might be something you'd try only if the patient had RR MS, because then she would be more likely to benefit. Now with more procedures under your belt, you would not hold to such a restriction?

Image
and
Image[/img]
I am not sure what we're seeing in the top left image, it looks triangular?
Bottom left image, bingo! Two white lines are the fixed leaflets?
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